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June of 2000
Went to see GP for physical feeling weak
No specific problems noticed but did do a CBC (Complete
Blood Count)
Wrote it off to getting older and continued normal schedule
November and December of 2000
Working a very aggressive schedule on a project and kept
getting weaker
Attributed to heavy schedule and ignored symptoms
Bruising, small blood spots, extreme fatigue and shortness
of breath
Dec 25, 2001 –
Relatives noticed Jaundice and I couldn't walk up five
steps without grabbing the wall!
Duh - Something must be wrong!
January 3, 2001
After working long days on project going up and down stairs
with boxes
Mini seizure in hotel room – Cramps in legs and right
side went numb
Finished out week and again went to see GP
January 8, 2001
Wife and daughter finally convinced me to go back to GP who
recognized extreme symptoms and referred to Hematologist, Dr.
Jeffrey Kirshner of Hematology Oncology
Associates of Central New York. They mean it when they say "Treating
Each Life With Compassion."
January 9,2001
Sent to emergency room at Community General Hospital
Syracuse
CBC discovered extremely low RBC Red Blood Cells, WBC
(White Blood Cells) and Platelets 3000 vs. normal of 150,000 – 400,000
Received my first platelet transfusion and 2 units of blood
– Was up most of the night waiting for the xfusions to be driven in from
Rochester in the middle of a blizzard. Did
not arrive until 2:00 AM
January 10, 2001
First Bone Marrow Biopsy resulted in Preliminary Diagnosis
of Myleodysplasia Refractory Anemia and biopsy results were also forwarded to
Strong Memorial Hospital in Rochester for further analysis. Admitted to CGH as
Neutrapenic (Low Immune System and highly susceptible to disease)
While in CGH, it was discovered I had a “Subdural
Hematoma (small bleed to the brain) during my seizure so had MRI, CT Scans and
EKG. Everything was pretty much
normal except for headaches caused by blood behind my eyes from the seizure.
January 15, 2001
Released from CGH and was told to take it very easy and
would be seeing Hematologist twice a week for CBC. Was also set up for first appt in Rochester for further
testing and diagnosis
Brother and sister were alerted as possible sibling donors
for an anticipated bone marrow transplant.
They both went to local clinics and quickly got results back to
Hematologist but unfortunately they were determined not to be a match.
January 17,2001
Initial visit at Hematologist office for CBC workup and
meet with Dr. Jeff Kirshner and Nurse Practitioner, Kathy Klinger.
Some doubt about initial diagnosis and will go to Rochester next week for
additional testing. Also had HLA typing done for comparison with siblings and
submission to Bone Marrow Database. Prescribed
Prednisone (Steroid) to build up strength.
January 25, 2001
Initial meeting with Rochester Bone Marrow Transplant Team
Dr. Jeff Lancet, NP Lisa Weldon, Nurse Co-ordinater Darrrin
(since left the team), Mike Ellis Social Worker and Mary, Financial Co-ordinator.
Answered a lot of questions and indicated that a bone marrow transplant
was high risk. They will recommend
alternative treatments prior to a transplant if I do not have a sibling match
(which I did not). Another biopsy
and further analysis switched diagnosis to Severe Aplastic Anemia.
SAA means my bone marrow has stopped producing blood cells properly and
they are being released into my blood stream.
My T cells are destroying the stem cells before they can mature and be
released into the blood. My bone marrow is hypo plastic, which means it contains
a low number of flood forming stem cells. In MDS, the cells are being produced
but they are malformed. The
treatment protocol for both is very similar, so the disease is not as important
as the treatment strategy. Will
schedule me for admission to Strong Memorial within the next two weeks for
initial Immuno Suppressant Therapy. This treatment is designed to suppress the T
Cells from destroying my healthy cells, which are being allowed to enter the
blood stream. Alternative
treatments are Antithymocite Globulin Therapy ATG (Horse Serum) and Anti-Human
Interleuken ALG (Rabbit Serum)
February 6, 2001
Admitted to 6th floor of Strong Memorial and had
a pretty bad initial experience being put in semi-private room with someone who
had the TV on all night and did not sleep well. Moved around to 2 other rooms before landing in a private
room because of anticipated neutropenia. While
neutropenic, I am highly susceptible to disease and must be somewhat isolated.
Admitting Doctor Abboud said they had decided on ALG
(Rabbit) and would get some preliminary work done in the next few days and then
start the ALG.
February 7, 2001
Admitting nurse (Diane) gave me a chart explaining how the
blood cells are produced and the difference between stem cells, T cells, etc.
Started on pre meds of Solumedrol, Celebrex, Protonix, Folic Acid,
Diflucan and Cyclosporine.
Started on growth agents of EPO to stimulate growth of red
blood cells and G-CSF for White Blood Cells and Platelets.
Dr. Abboud explained my diagnosis more thoroughly and also
explained that I would probably never be 100% of my old self.
Best we could hope for with this strategy was to put the disease into
remission and maybe be 75% of my old self.
I have a chronic disease that is not going to go away!
My T cells (Lymphoblast) are attacking my WBC’s, RBC’s and Platelets
because they are malformed.
The therapy is designed to suppress this activity and if
successful will reduce my dependence on transfusions. (Currently getting
platelets every 5-7 days and blood every 10-14 days).
There is a strong chance that I will have serum sickness of
fevers, tremors, rashes, etc. so they will give me many prophylactic drugs
designed to reduce the serum sickness. Next I am given the growth stimulants
mentioned earlier to increase my counts prior to the ALG.
I will also need a catheter (Hickman Triple Port) and a de-sensitization
process to determine allergies.
Counts today:
ANC 1.1 – Reliable measure of body’s susceptibility to
infection – Key neutropenic indicator if below 1.0 I am considered Neutropenic
Platelets 34
WBC 3.9
HCT 25
February 8, 2001
Catheter inserted and growth factors received. The
catheter sucks but it beats the heck out of IV's!
Counts today
ANC 4.1
Platelets 31
WBC 5.4
HCT 26
February 9, 2001
Immunologists did testing for penicillin allergies, which
proved to be negative
Good to go for the ALG
First dose of rabbit serum about 6:00 PM with nurse Jen
First infusion was six hours – Minor reaction near end of
the infusion of flushed face
February 10, 2001
Second dose of ALG
Officially Neutropenic with ANC at .8
No fruits, salads or fresh vegetables.
Wear mask if leave room. Visitors
wear masks.
2 units of blood and 5 units of platelets
No negative reaction to ALG
February 11, 2001
Day 3 of ALG Platelets and Neutrophil low so had more
platelets and blood
Blood Pressure going up 160/100
Pulse down to 43
Chest Pain
Shortness of Breath
Stopped Infusion redid premeds and finished transfusion
Halcyon for sleep at 1:30
Did 4 loops around floor for exercise
February 12, 2001
Final day of ALG
WBC -.1
Platelets 14
More platelets given
5 loops and mild upper body exercise
From February 13- 24th
Pretty uneventful just
monitoring counts and watching for serum sickness. Doing lots of walking
and exercising of my arms - lost total motion in one arm during serum sickness.
February 25 – March 3
Developed severe serum sickness with fever, hear
palpitations and edema (swelling of joints).
Knocked me on my a__. I was pretty well out of it for several days and
could not even get out of bed. When
I finally recovered, I lost the use of my right arm. Could not eve lift it off the bed and was pretty frightened
that it would stay that way. Also could not move my legs and had to use a walker
when I finally did manage to get out of bed.
Learned how to use urinal and bed pan!
Working with physical therapist slowly got the use of my legs and arm
back – Did range of motion exercises to avoid locked shoulder.
The ALG treatment essentially wiped out my immune system and I
was hospitalized for 4 weeks while my body reacted to the serum ("serum
sickness") and then began rebuilding itself. During the
hospitalization I was fitted with a triple lumen Hickman
catheter (You will need free adobe
acrobat to view the catheter - a very ugly thing that is directly attached to my aorta but saves
being poked for an IV every time I need blood drawn). Having never been
hospitalized before this was an eye opening experience. It's very
different being the one in the bed vs. visiting someone else.
The Hickman procedure was referred to as minor surgery and in
fact was conducted under local anesthesia but I certainly didn't enjoy it very
much. After some minor prepping, they shot some lidocaine (?sp) into my
skin in my chest and then before I knew it they were poking around my heart and
sticking this long plastic tube in me. See the picture above so you're not
surprised like I was!
One day after getting the Hickman, I began the ALG treatments and
everything appeared to be going fine until about 4-5 days after the treatments
had been completed. I then contracted the serum sickness and the next 2
weeks was awful! Thank God I had my wife, daughters and friends around. The
caregivers at Strong were fantastic and my core group has been great.
Here's my public thanks to Doctors, Mike E. Lucy, Kathy, Sharon and all the
others that have helped me through the initial stages. Thanks gang! They
helped make it bearable and I realized how important it was to have family,
friends and caretakers.
The serum sickness consisted of fevers, joint pain, insomnia and
some other generally ugly side effects. The most debilitating side effect
was the loss of feeling in my right arm and shoulder which still remains to some
extent 3 months later. I was on a full regimen of "prophylactic
medication" designed to prevent more serious effects. I tracked
my blood cell counts from the beginning and continue to do so today. Here
is my spreadsheet of the counts. There are three worksheets.
First one is a rating of the transplant centers, second is a graph showing my
troughs and third is my actual counts. Platelets only last me about a
week. That essentially says I am not making them myself at all YET!
Sue ( my wife) just commented that it is hard for us to remember
what life was like before we started tracking my platelets. I didn't even
know what a platelet was five months ago and now I think about them every
day. I now take Cyclosporine twice a day (100 mg each if you are
interested) but have cut down to only one other med (Diflucan, an anti
fungal). I also get a growth factor shot (neuritis) once a day and of
course have to "flush my ports" every day with saline. Anyone
who has read this far and has yet to experience the treatment, feel free to email
or post and I will gladly supply additional
details.
March 9,2001
Pretty much forced a discharge to beat another storm and
got home about 7:00 March 9th in a very weakened state.
Will have home care with St. Joseph’s Home Care starting Monday.
They will draw blood every Monday and Wednesday and arrange for xfusions
at CGH co-coordinating with Kirshner and Lancets offices. Pretty much settled into
a routine of platelets every week and blood every two weeks waiting to see if
the ALG will work. Need to give it
3-4 months.
March 15, 2001
Follow up visit with Dr. Lancet team – Really want this
to work as transplant for someone my age and size is high risk and was assured
that the number of transplants I receive should not be an issue (I had read that
too many xfusions can be problematic as my body will build up antibodies to the
foreign entities). Will transfuse
with platelets if count is below 10 and blood if Hematocrits are below 25.
Back to Syracuse and continue with home care treatment.
April 2, 2001
Discontinued home care and felt well enough to start back
to a semi-normal work schedule. Traveled
to Albany and Batavia and worked in Syracuse 2-3 days per week.
Was usually pretty strong in the AM but by 3:00 would start to wear down.
April 19, 2001
Lancet follow up. No real indications that anything has
worked yet. Will give it another
month and then consider a second treatment – may try the horse serum this
time.
May 17, 2001
Lancet follow up. Will
schedule re-admission to Strong near the end of the month.
May 18, 2001 DX +118 days ALG/Cyclo + 95 days
Had my monthly visit to Strong
Memorial Hospital in Rochester, NY. It has now been over 3 months
since my Rabbit Serum and they don't think that plus the Cyclosporine has worked
as planned so are seriously considering a Horse Serum treatment in the next 1-3
weeks. I'm packing my bags. Oh goodie - Hospital Food and no sleep
again!
May 20, 2001 DX + 120 days ALG/Cyclo + 97 days - Increase Cyclo
to 200 Mg twice a day.
Possible Positive - Platelets were at 20 and HCT at 32 on
Thursday. Waiting for Monday to see confirmation. Also some
discussion about Liver Enzymes and ?Bill Ruben?- My ferine level was 2500 -
normal is 250 - what to do? I a jaundiced and Sue says it is because I have too
much iron and my system is not properly breaking down and disposing of dead red
blood cells.
Fatigue is still definitely an issue. I attempted to mow a
flat front lawn which used to seem like no big deal and was actually looking
forward to it as a way to get some exercise. After about 1/4 of what I
would have used to do, I was flat out exhausted and had all I could do to get
the mower to a safe place and me into a chair. Took me 30 minutes to
restore my breathing back to normal!
May 28th , 2001
Admitted to Strong for ATG.
Pretest for ATG OK
Began first dose around 5:00 and had severe reaction of
hives to the horse serum. Decided to stop for tonight
and try again in morning.
May 29, 2001
Trying ATG again with a heavy (750 MG ) dose of Solumedrol.
Within an hour had several hives again and decision was made to drop the
ATG and try ALG again. Will start
tomorrow AM.
May 30, 2001
10:00 AM giving ALG at a very slow rate (55 CC’s per hour
over ten hours).
12:00 AM – So far so good!
7:30 PM Full infusion completed- no issues
Had 750 Mg of Solumedrol Steroid
Meds for ALG June 30
Solumedrol IV – Steroid
Diflucan Pill – Anti Fungal
Tylenol – Pain/Prophylactic
Cyclosporine – Immuno suppressant
Magnesium – Keep Magnesium count up
Cymedadine – Antihistamine
Prilosec – Anti Nausea
May 31,2001
Platelet counts of 6, so had platelets at 9:00
Rabbit started at 1:30 at 60/hour – seems ok so far
Rabbit went until about 7:30 and no issues. Went out
to dinner and felt pretty good.
Took an IV shot of divan for anxiety and sleep - did the
trick
Also had back pane and took two Tylenol.
June 1, 2001
Heading into my 6th month fighting this battle.
Awakened at 4:30 for blood draw (pretty typical stuff I
forget to mention early - don't expect to get any sleep while in the hospital!)
Had some potassium IV and then Solumedrol
Rabbit started about 10:30 and was done (last dose for this
time) and was done about 6:30. Went out to dinner and felt pretty weak and
but that it part of the Immunosuppresant side effect.
Counts today:
WBC 7.6 (thanks to GSF)
RBC 2.9 Low
Hematacrits 27 (Low)
Platelets 17 (Low Low)
June 3, 2001
Discharged with reasonable counts. Waiting to see if I get
serum sickness again or not. Actually feel pretty good and am hoping maybe
no serious side effects this time. Loaded up on all kinds of new meds -
Magnesium, K-Door potassium and Capri. Take more pills in one day than I
ever took in my life!
June 7, 2001
Check up and CBC - counts are low but going to try to get
through the week-end with no TX.
June 12, 2001
Low "Crits" around 22 - Go for Blood TX -
Uneventful but a whole day sitting in a room. (Don't read this if you are
easily offended - Diarrhea big time last night - no apparent cause?
Insomnia is also obviously a problem since I am usually updating the site till 2:00 AM. Supposed to take a GSF shot tonight and forgot - will do in the
AM! Lucy says WBC are low. Want to know if Cytoxan is a good idea or not -
Hopkins swears by it. NIGH says it killed 3 people in 3 months. This is
like Russian Roulette with people's lives! Will talk to Lucy on Thursday I
guess. Had problems with all 3 ports yesterday and today - Would not draw
properly but are working ok now.
June 14, 2001
Weekly trek to Strong for shots and CBC. Good news is
that platelets held at 14,000 so have held for 12 days - longest on record -
cautious optimism. 3 shots neology, eloign and GSF. Also used some "TPA" to loosen clogged port and advised to
flush twice a
day. Started on Flagil for Diareah/CDEF even though didn't have clear
results back yet. Discussed Cytoxan with Lucy - It is in their mix of
options, but want to give the ALG at least 3 months first. Then will
consider Cytoxan or MUD. At this point I'm going to have to trust they are
on the right path as it seems consistent with months of what I have read. I
continue to be weak which is very frustrating - things I used to take fro
granted like turning a were virtually impossible between weakness and
shakes. Should be dropping Prednisone more aggressively - Off within 5 - 7
days.
Moving the SSA disability effort along. Expect to
hear by September retro to July for $1600/month. Would definitely take
some of the financial pressure off. Also a good talk with Art re helping
out part time if able and update from John B's venture.
Mark Clark to host a benefit golf tournament in August and
Tom Sococia DJ something - chamber will announce and back. Need to decide
what we want and most appropriate way to handle.
June 15, 2001
Had a good active day - virtually no side effects other
than the normal 3:00 let down and the "prednisaone shakers' Really
comical to watch me work a mouse. Melanie and Fred has a disastrous flight
into Syracuse. Finals arrival after bus trip from Binghamton was 3:00 AM
but still great to have them with us!
June 16, 2001
Now into day # 13 with no platelet
XF - dare I get optimistic?? They were only at 14 ,but that beast crashing!
- In retrospect - IT WAS A FLUKE!
Had a very nice day with the whole family in attendance
capped with a bubble tying party and grilled chicken with trimmings on my new
grill. Thanks gang and especially to Richard and Michelle for assembly. It
works great . FINALLY seem to have the pool working - I get frustrated
when I am unable to do what used to be simple things like turning a couple of
pipe wrenches against each other. I also have limited upper body and arm
strength. Need to work on that and also lose weight!!! Prednisone make me
eat everything in site! Tapering off Prednisone - completely free by end
of next week at the latest. Woke up with severe leg cramps about 2:00 -
MSL introduced early father's day present of foot massage that really
helped. It was a great day having the whole family together and tomorrow
we celebrate father's day with the Burghart's at our first official pool party
(did some swimming and ate out on the picnic table night before last - was fun!
June 18, 2001
Like the song says- Some Days are Diamonds, Some Days are
Stones -
Platelets tanked!!!!!
WBC Tanked !!!!!!!!!
I am not going to sit around and let this thing get
me! I will become my own one man research team and figure out what
the heck can be done about this thing - Off I go!!!!!! Check out the book
list.
June 25, 2001 - Up and down we go.
Good News - Got a date
for the Golf Benefit - Aug 18th. After a couple of really good days with friends and just
keeping up with things, I got some kind of infection and crashed again.
Golly, gee whiz this is fun! I guess this is probably a milder form of the
serum sickness. Visit to doc's today showed platelets at 6k, WBC at 1.0 and
crits at 24. Monday in for platelets, Tuesday for blood and now taking
another new med for e-coli - Ceftriaxone. Feeling pretty good right now but really
has been up and down for a few days. Sue and I did a lot of reading on
chemical sensitivities, diet etc and are going to change our eating to
macrobiotic, low carb. Also started writing a more in depth article (its
on my laptop in case I lose track of all this research) on
all of this from a more factual point of view with research into immunology, the
blood system, immunotherapy, multiple chemical sensitivities, environmental
allergies, etc.
June 27, 2001 - Counts on Monday Platelets 6K, WBC 1.0,
WBC 2.55, Crits 24.5
Study on patients who receive transplants.
Personal observation = My age is definitely working against me. If I am going to
have a transplant, I should request it pretty soon - I am now 6 months since
formal diagnosis and have likely had AA for at least a year since I was getting
progressively weaker over a long period of time. Still feeling
pretty lousy even after BT and PT. I used to get a surge of energy after
xf but not so the last 2x. I have received a total of 43 transfusions. I
now struggle to lift 20 lbs and I used to throw around 80 to 100 lbs bags of
FERTILIZER like they were nothing. This was a long time ago but I had at
least 2 yrs of continued exposure working in a fertilizer plant. NO mask.
Breathed that stuff in all summer long. I wonder if others who worked in
similar environments have AA? Was in for xf Monday and Tuesday.
Tried to work a half day Wednesday and pretty much tanked about 2:00. Tomorrow
off to Rochester for CBC and shots. That's a pretty typical week!
June 28,2001 - The Roller Coaster Ride Continues
After feeling absolutely lousy and discouraged yesterday, today was
unbelievably good! Met with my NP Luci and we discussed what to do if the
current treatment strategy does not work. She informed me that they were already
considering me for a clinical trial and would be working to get me into a T Cell
Depletion protocol as part of an unrelated transplant. The T Cell depletion
strategy greatly reduces the risk of GVD and improves the odds of survival to
75%. She pointed me to some information and promised to send more.
We will be researching and updating over the next few days. We then worked
with a customer and everything went like clock work. I'm still at it and
feeling almost normal. What gives with this called AA anyways??
Discovered some real secrets on how to to research
the illness. Back on vanco (takes 1.45 hrs in the AM and same in PM vs
Ceftriaxone which about 10 minutes. Oh well, it gives me time to update
the web site.
July 9,2001 - Platelet Reaction and Summary of Week
Spent almost every day this past week either in the home tonight or doctor's
office . Monday - Kirshner CBC - 5K platelets. Tuesday - get
platelets. Wednesday - fourth of july party our house. Thursday - Hematocrits go
for blood tomorrow. 23 Friday - Get blood - in at 11:00, out at 7:30
PM. This Monday - platelets 5K - get platelets oops - big time rash
reaction - 50 mg of benadryl and 2 hydracortisone shots and NO PLATELETS - go
back to kirshner tomorrow! Felt pretty lousy all week. Even a short
walk wiped me out. I am getting progressively weaker and can't exercise to
keep up my strength.
July 12, 2001 - Good News Day!
I received some very exciting news today after a thorough conversation with
my care team at Strong Memorial Hospital in Rochester, NY. They are recommending
me for an Unrelated Matched Donor (MUD) Bone Marrow Transplant preceded by a T
Cell depletion strategy that substantially reduces the risk of Graft Vs. Host
Disease (GVHD). Full details at the forum
or you can subscribe to where I will be publishing lots of information about
this, go to http://www.topica.com/lists/rabbitman/
click on join the list at the bottom left. My good friend, Ray spent the
whole day with me in Rochester where I had CBC, cultures, Petabamine (anit
-parasitic), the usual pre meds and Platelets. Also had my 3 shots for growth
stimulation Neupogen, Epogen and GSF. Was very tired afterwards but
excited about the potential transplant. Tentatively scheduled for T-Cell
Depleted BMT starting on September 17th in Rochester.
July 31, 2001 - Aplastic Conference and Updates
We (Sue, Melissa and I) traveled to Des Moines, IA for nephew
Chad and new wife Maggie wedding. It was great to see lots of
family members that we had not seen in many years and to spend time
after the wedding with Sue, Melissa, Martie, Heidi and Kevin.
I was worn out for three days after two days with everyone.
Rochester arranged for a blood and platelet transfusion on
Wednesday, July 25 which bumped back up a bit so I could spend two
long days at the conference. Completely ran out of gas on
Sunday but now am home safe. Kirshner office today - counts
about the same as always - fully expect to get platelets on
Thursday....i.e. no change. I talked to many people at the
conference about transplant and read new book by Dr. David Biro
which really shook me up. The transplant alternative looks
very scarey!! I really don't know what to do now. If I
stay with the ATG/Cyclo and nothing happens I may be opting out of
the transplant alternative whether I want to or not. If I go
for the transplant I either die or go through hell with lots of
serious side effects as a result. Need to look into the
Hopkins Cytoxan program - last time they did not call me back - need
to try again. It appears that the AA Foundation is very much
against the Cytoxan concept.
August 8. 2001 - BMT, Chemical Sensitivity, Cytoxan and Where
do I go From Here?
Had a good talk with caretakers at BMT in Rochester today.
We (Sue and I) have been seriously discussing BMT strategy vs trying
other alternatives. Reading 100 days and discussing BMT
outcomes with others has me seriously second guessing the decision
to go for a BMT. Survivability does not look promising and
even if I survive the potential side effects sound worse than what I
am experiencing now. SO.... we are going to hold off on the
BMT til November and give the cyclosporine more time to work OR ....
seriously investigating the chemical and environment illness
alternative. Sue met with Dr. Sherry Rogers, a leading
practicioner of EI and they are recommending a detoxification
process at a center in Dallas. I have started the
investigation process and will keep the journal up to date.
Some new links at the links area if anyone is interested.
August 18, 2001 - ATG/Cyclosporine Officially a Failed
Treatment Protocol for Me
I officially gave up on the toxic drug strategy earlier this week
and have been devouring books and websites on alternative
strategies. I am off to Dallas, TX to the Environmental Health
Center. Will meet with Dr. William Rea on Monday and begin a
chemical detoxification strategy. Details on this strategy can
be found at http://www.ehcd.com
I sure hope it works as I am not real excited about the
possibility of a BMT and I am running out of options!
August 21, 2001 - Environmental Health Center Dallas - A last
ditch effort to corral this awful thing.
Well, we're here and checked into a "clean room"
environment. We are staying in specially retrofitted old
condominiums with not carpet, no padded furniture and beds that are
less than comfortable (hence writing this at 2:24 AM when I should
be sleeping.
Dr. William Rea is somewhat impressive but the
rest of the outfit leaves a lot to be desired. They seem to be
just going through the motions except when it comes to collecting
money -they have that down to a science! They have already
collected about $5000 and I don't know whether I am being hustled or
being set up for assistance. They have conducted numerous tests so
far including a myriad of blood tests for which I don't yet have
results and don't know what they are. I had a "thermography"
which is yet to be read, a ECG Heart Rate Variability Analysis which
yielded "abnormal results".
According to Dr. Rea, I
may have constricted blood vessels which may just be related to my
AA but he wants to wait for other results before prescribing a
course of treatment. I am also now fully immersed into the
world of Chemical Sensitivities and growing more skeptical by the
day. If it were not for my wife's unflinching belief in the
process, I would be on a plane for Syracuse. If this stuff
actually works, Dr. Rea needs to get his staff to clean up their
collective act.
He seems genuinely interested in helping me
(except for remarks about it already being too late) he is either
good at what he does or a good con man. I am certainly hoping
for the former as I don't have a lot of options left. The
chemical sensitivity testing requires that they inject a small
portion of potentially reactive chemicals into my arm and then watch
to see if i react. So far, it has been a waste (10 minutes for
each one and loads to go at $20/each) but I'm willing to give it a
few more days.
According to Sue it is indeed monotonous and
time consuming but worth it in the end. I am placing my life
in her hands and trust her implicitly but am still very skeptical
about all this hocus pocus stuff. On the other hand, all the
conventional docs could do was make me sicker than I was before. It
is a very frustrating feeling to watch all this going on and not see
a demonstrable progress. We are also now switched from the
macrobiotic (greens, grains and beans) diet to a specially designed
rotational diet to determine whether or not i have food
allergies.
Not sure what the point is to all of this, but I am
willing to play along for awhile. This "alternative MCS
approach" has until the end of October at the latest to prove
some results or I'm outta here and on my way to a transplant.
More to come ................
August 24, 2001
Had a terrible reaction to platelet transfusion today. They
were single donor, irradiated, leukopore, and CMV negative. I
had my normal pre-meds (tylenol, hydracortisone and benadyrl)
followed by a second dose and still got slammed! I had a
burning and itching rash from the bottom of my feet to the top of my
head. Worst case yet and they finally gave me an attarax that
after about an hour knocked me out.
August 25, 2001
I am a bit more optimistic today than earlier. I am
actually feeling quite a bit better today and am hopeful that the
change in environment and diet is part of it. I have a LONG
ways to go, but at least for the first time since this all started
feel like I am in charge and am taking action to do something about
this dreaded disease. I have started a new page for alternative
healing and will continue to expand it as I learn more about
this strategy.
August 26, 2001 - The Divine Transfusion
Sunday found us in Atoka, Oklahoma with one of my oldest and best
friends from high school and his wife. We had lost touch with
Rich (who was in our wedding) and Sally for almost 5 years.
Sue and Michelle found them and we made contact about a month
ago. And then, as though by divine intervention, we show up in
Dallas which is only about 4 hours from them and we met for dinner
yesterday. We also went to a church in Atoka at their
invitation and received a divine transfusion. I experienced a
"laying of the hands" for the first time and also a
special infusion from Rich and Sally.
August 27, 2001 - EMF testing Ok
Sue was of the opinion that one of my problems was related to
overexposure to the EMF rays from computers. Testing today
proved negative so I can use computers without concern! Dinner
today is almost like real people - Hamburger, potatoes and
peas! And - I had popcorn last night. WOW! Although I
like Dr. Rea he is still reluctant to say that he can help. I
started sauna treatment today and had a massage. Felt good but
not sure what this is all going to accomplish.
September 2,2001 - Eight Months Since Diagnosis
It has now been nearly eight months since my diagnosis and I am
probably more hopeful than I have been in six months. It is
way too early to declare even a small victory but judging strictly
on how I feel, I think this natural healing and detoxification
approach has a chance. I reached a pinnacle today in that I
was sweating massively which I have never done before and the
veteran patients here say that is a big step towards ridding your
body of harmful chemicals and toxins that have been building up in
your digestive system and immune system for many years. I have
also been testing for chemicals, molds, foods and minerals and
learning what compounds with which I may be having problems.
Once they establish what the testers call "end points"
they will develop antigens to those substances which I will inject
on a regular basis to help my system deal with them. In the
beginning this whole approach seemed a bit far-fetched, but at least
for now, its is making some sense and I am hopeful. I have
been repeatedly cautioned that there are no "silver
bullets" and this is potentially a long arduous process but I
have now met some people (granted not AA types) who are finding
success in dealing with diseases that other MD's have given up on.
Stay tuned! Received 3 units of blood today and some desferol.
Am hoping that this Texas blood will be my last transfusion.
Next testing will probably be 9/14/01. Praying, crossing
my fingers and even "imaging" my immune system to do the
right thing.
September 8, 2001 - Natural Healing Setback
Well, the platelet counts only held for two weeks but considering
my previous record was 10 days, I am still somewhat hopeful.
Also got another infection in my site and and had a negative
reaction to desferol. Was awake most of last Friday night with
fever and chills. Oh what I would give to be
"normal" again. Spending almost full time in
testing, sauna, exercising and talking with Doctors, Nurses and
other patients. Platelet counts were 14,000 on Friday so my Saturday
afternoon was spent getting a platelet transfusion (approaching 100
transplants now). Had attempted to work my upper body last
week to regain some strength and then contracted the infection so am
backing off a bit - Will hit it again next week. I remain
cautiously optimistic but it is a lot of work to stay with this
program Oh well - Nothing ventured, nothing gained.
September 15, 2001 - Melissa & Mike Get Married
I was scheduled to fly home for the wedding on Thursday. On
Tuesday, 9/11/2001 the WTC and Pentagon were attacked so all flights
were cancelled. I left Dallas at 8:30 Wednesday morning; met
Melanie and Fred in Tri Cities, TN at 10:30 PM, dropped off rental
car and then completed trip to Syracuse. We arrived on
Thursday evening and thanks to unbelievable work by Sue, Melissa,
Kathy and others the wedding went off beautifully. It was a
proud day for Mom and Dad to have everyone together and to witness
the love shared by Mike and Melissa. Their honeymoon had to be
be postponed because of the terrorist attack but they spent a couple
of days in the Poconos.
September 25,2001 - Cautious Optimism - Positive Attitude and
Financial Woes
I had a CBC before leaving from Texas to Syracuse, one while I
was there and one upon my return. I feel better than I have in
6 months and my time between transfusions is increasing. I am
now exercising 20-30 minutes each day, my brain is clearing (can
walk the straight line) and with the exception of a severe pain in
my shoulder, am able to almost function normally. I still
sleep more than I used to but the time between transfusions (24+ das
for blood and 13 das for platelets has me thinking positively about
Dr. Rea and EHCD. Time will tell. I feel really good!
Testing continues - Had a very severe reaction to grass - no more
mowing lawns for a living! Actually getting used to the
rotation diet and it doesn't seem as bad anymore. Daily
exercise, sauna and massage are working - I sweat more than I have
in my entire life and am supposedly ridding my body of harmful
toxins (you can tell by the SMELL!).
Settled into my one bedroom apartment without Sue and I miss her
terribly. We talked last night but got into financial issues -
VERY TROUBLING - will insurance pay for any of this? It is
costing $70 per day to stay here plus Dr. visits, vitamins, special
diet, testing and now they want me to buy a sauna ($5000) and redo
the new house we just moved into (or move). No carpets where I
will be spending most of my time (house is wall to wall) and he
wants the furnace outside of the house because of my sensitivity to
natural gas. Who is going to pay for all this? The money
we raised in the golf tournament is long gone and we are now eating
away at our retirement (which was already way down due to lousy
investments). Sue to contact patient advocate
organization. Now that I am finally making some progress
health wise, the financial issues are overwhelming!
The Waiting Game
An observation on waiting. Since being diagnosed with AA, I
have spent more time waiting than ever before in my
life.
1. It started with going to Dr. Kirshner office and waiting to be
called for my blood draw, then waiting for results and to see Dr or
Kathy. Then waiting to get set up for transfusion. Then
waiting in the admitting room to be checked in. Then waiting
for whomever is to give me transfusion, then waiting for paperwork,
then waiting for meds, then waiting for platelets or blood to show
up, then watching the drip drip drip of the IV.
2. More waiting at BMT unit and hospital. Waiting to see
docs, waiting for meds, being awakened at all hours for blood
checks, Waiting to go home.
3. Go to EHCD and watch the clock while I exercise and
sauna. Go for testing and wait minutes between tests
("Needles" sticks me about 15-20 times a day and I sit an
wait in between sticks with no diversions - no TV, radio, books,
computers, etc. and the conversation gets old - BORING!)
4. Wait for food to cook - Everything has to be cooked from scratch.
I have always been task oriented so this waiting has been a major
adjustment but I am surprisingly getting used to it. Not sure
how will I adjust back to a more normal life style but would sure
like to get the chance!
September 30, 2001 - There is definite hope!
After a bit of a tough day yesterday ( felt pretty drained all
day but still managed to cook, do laundry and did my full set of PT
in the AM), I am feeling great again today. Friday and today I
feel almost like my old self. Have a decent amount of
energy, my mind is clearer than it has been in a long time and I am
hopeful!
Heard very good report on
another fund raising event (Poker Run at the riding stables) where
we raised a down payment for my sauna (will need to continue this
treatment when I go home).
Sue is going to try to sell the house as it would cost too much
to retrofit carpeting and it is too much for her to keep up if I am
unable to mow lawn (grass reaction) and maintain the pool (loads of
harsh chemicals). Very disappointing to think of selling after
only living there one summer but what will be, will be.
I have been doing lots of research the last couple of days and my
head is more clear than it has been in a long time. Now have
gone a full month without needing a blood transfusion. I will
have a CBC on Monday with results on Tuesday. Read as part of
my research that high altitudes can cause high hematocrits - since
mine are low and that is what zaps my energy, should i move to a
higher altitude?
Speaking of moving, i am giving serious consideration to
relocating to an apartment in a warmer climate. I am very
concerned about going back to cold country with all the illnesses
that float around in the winter time in CNY. Maybe we'll have
to maintain two smaller homesteads if we can sell the place on
Lawsher Drive (we hardly knew ye). The research page and the
forum contain all my latest speculation and research.
Lunch today is lettuce and artichoke hearts.
October 3, 2001
Felt pretty weak and tired today - Napped most of the afternoon
but beginning to feel a bit stronger again. Now over 30 days
since blood but did get platelets on Tuesday (counts were P=10, Hemo=8.3,
Hematocrits=24, WBC=2.4, RBC=2.4). Have been doing lots of
research and discoverd a similar disease (actually a Dr. Rea patient
has it) called ITP. Have also been dissecting Dr. Young
article and discovered in both places the mention of bacteria and
viruses as potential causes of AA. I had shingles and have
been testing positive to bacteria. Will talk to Dr. Rea about
it. Other patients are going through ALF and IV therapy which
I also need to ask about it. Settling into a routine of
grocery shopping at the organic food store ( i do drop by Tom Thumb
occasionally for a trip down memory
lane), preparing food from scratch and
doing dishes like in the old days.
I try to catch the 5:30 news but am
having a hard time adjusting to that
part of the time change.
October 7,2001 - Checkpoint with Dr. Rea (It's been 7 weeks)
See
update of October 8 in Alternative Healing Section
Good News
- I feel better than I have in a year
- It's been over a month since my last blood transfusion
- I can breathe, smell and exercise 30 minutes per day
- I am ridding my body of chemical toxins
- I am no longer taking all the toxic meds
Bad News
- I still need platelets every 7-10 days
- I can't make it up a 6 step flight of stairs -Lack of Energy
- Still no clear link
from immune system to cell growth (CD34 Glcoprotein?)
- My immune system is
still destroying my blood cells
- I am taking more vitamins and supplements than I was meds
October 8, 2001 Update
The session with Dr. Rea and Trep went very well. They answered all
my questions (see above link) and I may be able to go home if my environment
there is safe. (we're working on it) They agree with my
statement below and were positively encouraged by my research and
approach. For what it's worth, if anyone ever gets to the point of
going to the EHCD you really do have to take charge of your own
situation. If you are lucky, you get 15 minutes of Dr. Rea once or
twice a week and the more research you do on your own (including really
reading the reports they give you copies), the better off you will be. He
looks at your chart for about 5 minutes a week and it is really up to you to
do your homework. I devoured my chart, my independent research and
prepared the document mentioned above. I think everyone is very
different and therefore must do the same. Sometimes it is hard to
concentrate, but you have to take advantage of the times that you can think
and document everything you are tyring to do - as Dr. Rea says "it's
your life - make the time and do the work - what could be more
important?" If your are willing to put in the effort, he will
help. Otherwise you may as well save your money and stay home.
There is "coddling" at the EHCD.
Pretty sure that I am onto something - CD34 presence is
significantly reduced in patients with AA. CD34 is somehow linked to
threonin, cystine and some other amino acid (i'm too tired to look it
up). I am low in all of the aforementioned amino acids so will take
supplements. Let's see what happens. There is a part of me that
believes it couldn't be that simple or one of the brilliant researchers at
NIH would have tried it--- but what the heck - i have nothing to lose.
my alternative is to continue to get transplants or do a BMT. I am
definitely going to exhaust every environmental/natural approach i can find.
OCTOBER 11, 2001 - MAJOR SET BACK
Just when I thought I was making some progress the roof
fell in again. I was all psyched up thinking the environment clinical
depuration therapy stuff was working and then my counts went LOWER THAN THEY
HAVE EVERY BEEN BEFORE! Crits dropped to 16 and Hemoglobin to
6.7. That is lower than when I had my original episode and even after
4 units of packed red blood cells they just barely crept into the safe range
again. Very disappointing. Will continue with the EHCD regimen
but this was a blow to my confidence. Have been in the hospital for
the past two days getting blood, platelets and desferol with a roommate that
had the TV on all day with visitors talking over the top of the TV -What a
joy! I was so weak when I checked in i could harldy walk and now i
know why - had temp of 102 the night before and cold sweats/chills all
night. Up and down we go, round and round we go. Going on 10 months of this
fun.
October 11, 2001 - Feeling Really Good Again
In this never ending up and down battle I felt really good
and energized today. Like I should feel after getting 4 units of blood and 1
unit of platelets but the counts not responding very well definitely has me
puzzled. I took two does of calmax from James today, did 30 minutes
solid on the treadmill, 30 minutes of sauna and had IV therapy of all
essential vitamins, minerals and amino acids plus extra on Vit C and a few
others. Was unable to buy threonin locally so ordred it online for
delivery to Syracuse (hope I'm back there soon). Will buy cystine and
arginine tomorrow. My appt with Dr. Rea originally scheduled for
Wednesday is now tomorrow at 9:45 and we decide if I should go home or not
considering the crash episode of Tuesday/Wednesday. I'm not sure what to do
- Sick of being here but if another few days would help I will likely stick
it out. Need to try to meet with Dr. Griffis (Immunologist/Microbologist)
to discuss my CD34 Threonine theory.
October 18 Update - "The
Truth - Always the Truth"
I just spent another night in the
hospital - My best guess is that I have spent well over two months
now in a hospital bed and another two months in a crummy cotton
covered piece of plywood all in hopes of finding some way of beating
Aplastic Anemia. Today, I would have to say that AA is
winning. My counts are actually worse than they were when I
started and that is after SIX units of blood and FOUR units of
platelets. This is not progress!!
After a little over a week since
getting both blood and platelets by platelets were at 5000 (the
lowest they have ever been!) and a week ago, my other counts were at
their lowest ever. I am angry, discouraged, disappointed but
still determined to beat this damn thing. What I am realizing
more than ever is that nobody is going to do it for me. My only hope
rests in working with my wife on trying to make something in the
whole world of natural healing work while continuing to research and
try to find my own cure.
(Copied from Alternative Treatment
Page)
In summary, I am pretty disappointed
at the moment. I have spent nearly $20,000 and my counts are
no better than when the day I arrived at the Environmental Health
Center of Dallas. I may be impatient, but it would seem to me
that after over two months of eating a restrictive diet, getting
poked in the arm an average of 15-20 times a day,
"depurating" (exercise, sauna,massage), taking God knows
how many tests, IV Therapy, Oxygen Therapy and virtually everything
they offered, my counts would have improved. THEY DID
NOT!
Now, if my objective had been to
detoxify and "balance my immune system", then I would have
to say that it probably worked and may even recommend the place to
others, but at least for now, I would have a very hard time
recommending it to anyone who has a serious disease like AA.
Most of the people here have allergies or have somehow been exposed
to toxins and or chemicals,and more than a few are just
whacko. I needed to get out of here before I became one of
them!
So - on to the next attempt. I
will meet with folks in Rochester in the next few weeks and
seriously evaluate the cytoxan treatment again. It still scares me
but this alternative healing strategy is not getting me
anywhere. What it did accomplish was to rid my body of
cyclosporine and all the other crap that conventional treatments
were loading it with. Even my counts are in the tank, I am
stronger and can think more clearly than at any time since
contracting the illness. By default, the natural approach
still probably has a few weeks to go and I may even give it to the
end of the year. "Immunosuppresant Theary" (ATG/Cylco,
etc) got six months so we'll give "Immune Balancing" six
months and then it's on to "Kill the Marrow and see if my body
will Replace It" (Cyclophosphamide). Great options from a
country than can go to the moon but not cure the common cold!
I must say that I am less and less impressed with "modern
medicine"! I already know more about Aplastic Anemia
specifically and Autoimmune Diseases in general than every Doctor I
have met and I have only been studying it for a few months - and I'm
not getting paid over $500/hour to convince people to try the latest
treatments that don't even work- Must be I'm in any anger
phase!!!
November 1, 2001 - Disappointment,
Despair and Determination
I am discouraged, disappointed and
down in the dumps! It seems like everywhere I turn is bad
news. We are having to sell our house, customers are beginning
to bail out and we are spending what is left of our savings on
treatments that do not work. I really don't know where to turn
and for the very first time in my life, I feel helpless. Just
when I can garner enough energy to try and right the ship, I spend
two or three days in the hospital or with doctors just keeping
myself alive. Nothing appears to be working relative to a
lasting cure or treatment. I am simply borrowing other
people's blood cells until they die off and I go back for
more. My body is losing in the battle to create its own cells.
Oh, woe is me!
Now....I am still determined to beat
this damn thing and I will not give up. I am going back on a
strict rotational diet, taking all the vitamins
prescribed by Dr. Rea and will do exercise and sauna as long
as my body holds up. I will continue with this protocol while
further investigating Cytoxin and/or BMT. Dr. Lancet is
opposed to Cytoxin but promised to talk with Dr. Brodsky or another
member of the team who did the Cytoxin study. I have an appt
in November to discuss his findings, plan for a BMT or Cytoxin after
the holidays and have another Bone Barrow Biopsy. That is all
the news from Lake Woebegone where
all the women are strong, the men are handsome, and all the
children are above average.
November 10, 2001 - More Days Forever Lost to
Doctor's and Hospital Visit - And a Close Call
A chronicle of the last several days since returning
to Syracuse on October 20th:
Friday, Oct 26 - Kirshner appt - Platelet
Transfusion 23 Hour Admit - There til late in the evening
Monday, Oct 29 - Kirshner Blood Check - OK wait til
Rochester on Thursday
Wednesday, Oct 31 - Sorry Charlie, you need blood
NOW (Crits 23.8) Halloween in 23 hr admit
Thursday, Nov 1st - Day trip to Rochester for
mtg with Dr. Lancet and Sharon - Cytoxin not a good idea for me.
Friday, Nov 2nd - Prearranged from Rochester with
Kathy K. for early AM platelet infusion - Home Tonight
Saturday, Nov 3rd - An actual day of freedom -
cleaned up some junk around the house and out to dinner
Sunday, Nov 4th - Back on the merry go round with a
new spin - Got up early, showered and got ready for church then
suddenly got severe chills followed by fever up to 103 and spent
nearly the whole day fighting it. Sue wanted me to go to ER, I
refused and spent the day alternately freezing and roasting in bed.
Monday, Nov 5th - Felt better, showered etc and went
to scheduled visit with Dr. K. - WHAM, 8:30 AM Shaking chills so bad
could not hold the phone to call Sue. Transferred via
ambulance to CGH. Spent several hours on the 3rd floor (only
room available on short notice) getting stable (on oxygen, IV,
tylenol and antibiotics) and then transferred to 469. Rest of
the day getting meds and had another episode that night I think -
Had about 5-6 but then kind of ran together after awhile. This
one scared the heck out of me. I could not control the shakes
and almost went into convulsions at least 3 times where I was about
to bite my tongue etc. - Lovely experience! Dr. K says some
kind of bacteria (not that big a deal for a normal person, but life
threatening for me). Took cultures from line and arm.
Also a CBC to check blood levels. Another good shaking session for
Sue later in the day. She spends the night with me.
Tuesday, Nov 6th - Early AM severe shaking session.
OK lets get to work on this one - Two units of blood, 5 pack of
platelets, Vankomyacine, Cephapime and Saline all day and
night. A slave to the IV pole again. Preliminary results
confirm a bacteria but don't know what yet for sure. Check back
tomorrow. Kathy spends the day. A late afternoon shaking
performance for Kathy and Pastor Derrin. Kathy looks worried so that
gets me even more concerned cause she sees this stuff all the time.
Melissa spends the night.
Wednesday, Nov 7th - Of course an early
morning shake session. Dr. Brody (Infection control changes the
antibiotic mix a bit - off the vankomyacine and add something I
don't remember) Sharp pain at catheter site - change dressing and do
a culture. Melanie and Fred arrive early Thursday AM after driving
all night. Oh, oh this is getting serious. I put on a special
matinee performance for them about 2:00 PM.
Kirshner takes one look about 4:30 and says
"This is what we call in medicine, a no brainer - it has to
go." Schedules immediate surgery - Dr. Congelli arrives
at about 8:00 PM, a little morphine and lydocaine, and by 8:30
PM, my old friend Bernie Hickman is history. Bernie
saved me from approximately 500 needle sticks so he was a good
friend - So long Bernie. Back to getting needle sticks from
butchers. One of them bruised my arm reminiscent of the first
Rochester experience. I have a black bruise about 2" by
4" under my left arm from an IV poke!
Thursday, Nov 8th - Dr K. 10:00 AM "You have
septosemia, negative gram rod very serious blood infection that
needs to be addressed right away." Stat back on the vanko -
Carol actually steals someone else's dose and it is going in to me
about 15 minutes after the order is given (normally even a stat
takes at least an hour). Dr Brody later confirms that I actually
have two seperate bacteria infections and will get more vanko and
cephapime. Watch for another day or two and then go on an oral
and go home. No shakes on Thursday!
Friday, Nov 9th - Released at 10:00 AM with oral
SMZ-TMP DS Tabs (Sulfamethoxazole) Known to cause Aplastic Anemia -
Now that's interesting! This one sounds like a real winner,
but have to get the bacteria under control or it will kill me.
Nice choices I have. Speaking of choices:
I am now very concerned about the short duration
between transfusions - blood was less than a week and platelets were
only 4 days - and they did not respond well at all. I will
likely need either or both again early next week. The bacteria
episode also is making me seriously reconsider the decision to wait
for a BMT til after the holidays. I may not have that long at
this rate. I have witnessed via newsgroups how quickly people can be
taken by one of these infections and I don't want to go that
way. So - email off to Luci inquiring as to how quickly they
could arrange the BMT if I decide to turn up the time table.
Will watch counts this week and probably make an ultimate decision
shortly - but to complicate things, We sold
our house tonight! Accepted an offer about 7:00 PM on
Friday. This will at least stop the financial bleeding.
Wish it was easy to stop my bleeding!
November 29, 2001- Cytoxan here I come!
But first, an update on what has been happening
since last I updated - We have indeed sold our house and have put in
an offer on another smaller house. Will cut our mortgage
payment in half and pay off in 15 vs 30 years. Overall savings
of $400,000!!! Wow. Still fighting with the insurance
company over the bills in Texas and not even sure how much we owe
for all the other stuff. Will probably try to get to the
bottom of that mess this week-end.
Pretty much normal stuff with Dr. Jeffrey Kirshner
and Nurse Klinger. Platelets weekly, blood bi-weekly and now
for the good news - Meeting with Dr. Jeffrey Lancent (Jeff Jr. as I
like to call him) and he had an email discussion with Dr.
Brodsky of Cytoxan fame and after learning that Dr. Brodsky has
indeed had success with previous ATG failures has decided that we
should give Cytoxan a try. Will also put me on daily iron
chelation treatments so I need a Pick Line? installed. Cytoxan
will be scheduled for February after the holidays and house selling
and moving is out of the way. My job is to stay cool and avoid
infections til then. Have been doing a little bit of real work
for a customer for a couple of days and it feels good to be
"back in the saddle". So - Cytoxan it
is.
Cytoxan is similar to ATG but completely wipes out
the immune system and hopes that my body will repair its own bone
marrow problem. You can read more about it by searching on
cytoxan and/or cytoxin on the search page - I spelled it wrong for
awhile. Special thanks to Mindy Pember for encouraging me to check
out this protocol. I am hopeful that this will work for me as
it has for so many others.
We had a wonderful Thanksgiving dinner at our house
and will likely have Christmas in the big house before our
downsizing. Sue and family hosted 30+ and we all ate too much
but enjoyed the day.
December 1, 2001
Taking on the Insurance
Company. I anticipated this was going to happen but did
not realize how much effort Sue has already put into the
battle. With the combination of my wife's persistence
and my attitude, they are in for a battle. We have already
been in contact with The Patient
Advocacy Organization and on their advice will be contacting the
State Attorney General's Office. Any further suggestions would be
greatly appreciated.
December 9, 2001
We have now assembled about 5 pounds of documentation on the alternative strategy, chemical toxicity, etc.
There is a current copy of our letter and the book list lists most
of the docs we referenced. We also received a very good letter from Dr. Rea who described how the therapies should work
(I will scan it and get it on the site later today hoepfully) - now I just need to stay on the program and hope
it works. Sauna is in town and will be picked up on Monday.
I must be getting better 'cause Sue told me (in her
own special way) "you can pick up and clean a little while I'm
away." One of my goals for the next week is to assemble
all of my materials from multiple places and begin the draft of my
book. I have some here, some on various computers, some in
journals and lots still in my head.
I am now on a desferol IV program that requires
daily 1-2 hour infusions in an effort to bring down my iron levels.
I officially have multiple organ dysfunction and from reading about
others' problems, I am sure that the Docs are worried about what
comes next (I'm probably too ignorant to realized what is happening
and just keep on keepin' on).
Worked out an arrangement with several of our
better customers whereby we will continue to provide service
on a different basis given my illness. Melissa is taking the
lead and I will support her as I am able. Not sure if I
mentioned this earlier or not, but I now am the proud owner of a
Handicap sticker. What a joy to park close to entrances but I
would gladly give it up to return to my old self - well, maybe not!
I also got a speeding ticket the other day when distracted about
having to sell our house. The daily battle continues.....
Friday was an all day hospital visit again where I had a nice
conversation with John (non Hodgkins Lymphoma) re chemical
toxicities and how many people in the baby boomer generation are
being impacted by these auto-immune diseases.
Also learned that another CGH patient is now 100
days post BMT and doing well. Way to go Paul! I now include
Ed, John, and Paul as members of my local informal research
panel. They all reside in Syracuse and I pick their brains
whenever we meet. CGH is adding a new, more private, infusion
area so I may not be able to bug people as often. But on the
positive side, I won't have to put up with others wanting to watch
the meaningless drivel on the black box.
Some interesting news from Nurse Klinger, my "Advocate General" - The longer, your body compensates for the lack of
oxygen and low counts, the larger your heart muscle gets.
So now I have one more thing to worry about - not that I worry much
anyway - and it just means my heart can be bigger for those
around me!
By the way, I got the cleaning done, so now I can
play around with the cool new animated gifs sent to me by Vivianne -
Thanks Vivianne.
December 11,2001
Sauna arrived, is uncrated and 3/4 assembled as I
write this. Had to take a break to let the power screwdriver
recharge! I wish these darn tools could keep up with me. After
my two hour drill with the desferol IV I went to work and assembled
the sauna. It's a big sucker. Takes up a good portion of the
basement and I wonder how it will fit in the new place - yes, in
about 1-2 months I will be disassembling, moving and reassembling -
now what sense does that make? None, but I just might get lucky and
get detoxified in time to avoid the chemo, so it is definitely worth
a try.
Sue fixed a great pot roast with all the trimmings
on Sunday and we hosted Jack, Liz, Ted & Addie. A very
nice time. I treasure the time with my friends and family and
look forward to each day I am here. I am very upbeat these
days, feel good and hope it lasts. The insurance company meets today
to decide on our case - A positive outcome could really lift our
spirits as we are downsizing and selling off assets just to stay
afloat. I wonder how others who are less fortunate than we are cope
with these issues. Thankfully Sue can work, Melissa is holding
AEBIZ together, I have SS disability and the insurance company has
paid for a tremendous amount of the treatments. I never had
any appreciation for these issues until now - hopefully I will be
more understanding of others' plights as a result.
It has been very interesting to pass through the
various stages of coping with these beast. Even within a given
day, I will go from feeling very upbeat, to being in the dumps, to
being angry, to having hope and back to feeling good. Right
now, it feels good to be somewhat normal except for the transfusions
and desferol infusions. I can think, work a little, enjoy the
sunshine (it's been incredibly warm in UPSNY this year - as I write
this, it is close to 50 degrees and supposed to hang on for
awhile yet) and pretty much lead a normal life.
December 22, 2001 - So this is normal?
My daily routine is now the following:
Awake at 6:00 AM, plug IV in for daily dose of desferol to
chelate the blood out of my system (Docs are concerned that my feratin level is
too high and will cause organ damage)- Takes about 1.5 hours. Exercise
from 8:00 - 8:30, take my daily dose of abut 15 vitamins, sauna for an hour,
wrap my arm so it does not get wet and take a shower and get dressed. It
is now about 10:30 or 11:00 and I can start my day. Near the end of
transfusion cycle, I can't do the exercise and sauna due to lack of strength and
energy. On the good days, I can function normally after 11:00. On
the doctoring days, I go in for blood count checks and/or
transfusions.
For example on Friday I got up at 6:30, cleaned up and was at
CGH Home Tonight at 7:30 getting hooked up for blood. Returned home about
3:30, hooked up for chelation IV and after showering, had my first oppty to be
IV free at 5:30 PM. And my wife asks "Why are you so
cranky?" I reply, "Because dear, I have been hooked to an IV all
*7&654%&^*^(&**(*)* day." So I ask myself "This is
normal?" An here I am at 6:30 on a Saturday morning with my IV safely
plugged in getting chelated.
Alas, Dr. Abud warned me that my life would never be normal
again and it has now been almost a year since that prophetic comment. Sue
and I celebrated our 32nd wedding anniversary in the first snowstorm of the
season reminiscent of our wedding day. We went to Inn of the Seasons and
had a somewhat disappointing meal but at least we were able to celebrate.
Dr K and Nurse K expressed mild amazement that I was as healthy as I am during
last visit. Last year at this time I was among the walking wounded barely
able to get around.
We went to a customer/company xmas party last night and Mike
asked me if I could go on receiving transfusions like this forever. I
guess I could but must be careful about infections, worry about organ damage and
face the fact that at the bottom of the cycle I will be pretty useless. I
read about others who have been doing it for many years so I guess if none of
the remission/cure strategies work, I will just keep on keepin on and make the
best of my new normal status.
If anyone is interested, I have my draft notes for a book now
posted here at http://aplasticcentral.com/book.htm.
It's in very rough condition but I am attempting to consolidate all my notes
from various sources. Hopefully over the next several weeks it will begin
to take shape.
I caught the last bit of a news report last night about new stem
cell transplant protocol at Hutch not requiring full HLA matching so am off to
surf. Good morning to anyone who reads this.
January 18, 2002
I'm not sure if I have much of anything new to
report, but have not updated my journal since before the holidays so
will at least capture some of my feelings at the moment. The
holidays were very nice. The whole family was together for
several days and it was wonderful to be alive. At this time
last year I was not sure if I would see another Christmas. My
original prognosis was 6 months and here I am 12 months later and
beginning to think I may have a shot at beating this thing.
I feel stronger than I have in a long time and am it
has been 10 days since my last platelet transfusion. That's
nothing to write home about, but I do feel a bit stronger than usual
and have been exercising, taking a sauna and working almost every
day. I have managed to put in 2-3 full work days a week for
the last 2-3 weeks and have not hit the exhaustion wall in quite
awhile. I'm even daring to think a little longer range than
next month again. Need to get the house move and the cytoxan thing
behind me and then can hopefully thing about being normal
again. I am certainly concerned about the effects of the chemo
as I know it will knock me for a loop (hair loss, vomiting,
weakness, etc. etc.) but others have faced it and I can too. I
am probably in better physical shape than I have been in the last
two years so that should definitely improve my odds.
Sue, family and friends continue to be patient and
supportive with all my mood swings and days of exhaustion. The
exhaustion usually comes about 12-14 days after blood transfusion
but I am learning to really take it easy on myself when that time
approaches. Immediately after the transfusions I am strong and
full of energy.
I am really gratified by the number of people who
have written saying how much they are getting from the web
site. I receive at least 1-2 notes every week and the traffic
is now at about 300 visits per day. I have worked hard to
re-organize all the stuff and will likely go into research mode
again soon. I want to find out more specifics about stem cell
research and therapeutic cloning as I think they both can
potentially have a major impact on our disease. The obvious question
becomes can they do anything in time to help those of us who are
transfusion dependent?
Bye for now - It's 1:00 in the morning and I just
won $40 playing poker.
February 11, 2002 - Another Line Bites the Dust
Yes, now my PICC Line has become
dysfunctional. It essentially pulled out and needs to be
removed. I will be getting a new Hohn Catheter on
Monday. That is what they were planning for my Cytoxan so it's
no big deal.
Beyond that, we have successfully moved into a new
smaller house thanks to the extraordinary effort of family and
friends. We are about 75% settled and to our surprise
everything from the old bigger place fits in the new place.
Counts and transfusions are pretty much the same as
always. I guess I am learning how to pace myself around the
transfusion times as I seem to have good energy for about 12 days
until I start to crash. Beyond the inconvenience of 3 hours of
desferol and 1 hour of exercise/sauna every day, I have become
accustomed to my new lifestyle. Certainly am no longer an
"A" type. Probably about a C- but it beats the
alternative.
February 12, 2002 - More
on the Hohn and other catheter experiences
I have now been the proud recipient of three types of cathethers so I can speak from practical experience and hopefully warn some of you about
pluses/minuses and dos and don'ts -
So here is my monologue on the insertion, care of and dangers associated with IV chatheters. Start by reading the link below:
http://eduserv.hscer.washington.edu/pharmacy/pharm560/6thweek/ivcath.pdf
My first experience was with the Hickman Long Term Triple Lumen Tunneled Catheter - Hickman was the guy's name who invented this little gem and triple lumen refers to the number of tubes ultimately available for plugging in to. A lot like plumbing - Hot, Cold and Warm with seperate "faucets" for each.
This was installed via a surgical procedure in February of 2001 and lasted for about 8 months before becoming infected. This is by far the most painful and invasive but it did last me a long time and helped avoid numerous butchered IV insertions. (My arms had become black and blue from all the needle pokes.)
They begin by providing local anesthetic (lydocaine) and then make two relatively small cuts (one in your neck just above the collar bone and the other in your chest. They then "fish" a wire down through your vein and directly into the left atrium of your heart.
This is not as scary as it sounds, but I would have appreciated knowing what to expect before the procedure. They then follow the wire with the plastic tubing which becomes the permanent IV tube. Finally they "tunnel" down from the insertion point in your neck to a permanent mounting place on your chest, attach the claves (little blue connectors which provide a heparin lock to prevent leakage and little plastic clamps which are a further safeguard.)
The whole procedure took about an hour from start to finish and if I were to have this done again, I would opt for "real" anesthesia rather than the local. It was not a pleasant experience. I had some rather annoying pain for a couple of days afterwards and then it became like an old friend.
I "flushed the ports" on a daily basis with the 10 cc's of saline. This procedure keeps the lines "patent" or able to draw back and forth. I also had to change the tagaderm (clear vinyl patch) dressing on a regular basis. After several months, the stitching used to secure the catheter to my chest became very irritable and ultimately became so infected that I landed in the hospital with a sepsis (blood) infection that caused rigors (shaking), severe chills and a fever of over 105 degrees.
This was definitely no fun and landed me in the hospital for about a week. As a result, my Hickmans was removed (had to also be done by a surgeon but was less painful then the insertion and was done in my room rather than in a surgical area.)
I then had a Peripherally Inserted Central Catheter (PICC) installed in the fleshy part of my left arm just below the elbow. This was by far the least painful but also the most useless device. If they suggest a PICC, run the other direction. Mine only lasted about two months, was constantly in the way and ultimately pulled completely out.
In fairness to the PICC, my "statlock" got wet shortly after the insertion and none of the people who looked at the line knew enough to replace the statlock (a very sticky butterfly type bandage that locks the line in place on your arm) I subsequently learned (while having my Hohn installed) that immediate replacement of the statlock may have prevented the line from pulling out.
My latest experience is with a "semi-permanent" device called a Hohn Catheter (again name dfor the inventor). Hohn gets a B+ so far. The procedure was performed by a radiologist and was similar to the Hickman experience but less painful. It only requires the top insertion point near the collar bone and does not normally require suturing. (The doctor made the decision at the end depending on how well the insertion went). In may case, they decided the statlock would suffice.
I have virtually no experience with this device yet, and except for the fact that it is more exposed than the other two (looks like a Frankenstein insertion device hanging out of my neck) I think I will probably like this one the best.
Closing comments - be very careful in the first few days to not get the "site" (insertion point) wet and then try to keep it covered with saran wrap or a "baggie" when you shower. Moisture under the bandage is bad news! If it gets wet, change it immediately. I'm pretty sure that I contributed to my sepsis experience by letting mine get wet (got careless after awhile). Also be sure that you or anyone who changes the dressing thoroughly (20-30 second scrub) washes their hands and wears gloves. My wife (RN) tells me that the gunk under your finger nails is the number one cause of sepsis infections.
Here ends the monologue - be sure to check out the link above and feel free to email me with questions. I am now a self appointed expert on IV catheters! Also check my website at http://aplasticcentral for research information, stories of other patients and even some good music.
February 22, 2002 - Boredom Sets In?
OK - I've had my little sabbatical and it was nice
for awhile, but I am feeling more and more useless. I'm
certainly grateful to even be here but I need to start contributing
again. Look out world - I'm gonna be back!
Bruce Lande
SAA 1/9/01 2X ATG no success, Cytoxan scheduled for April 2002
sales@aebiz.com
http://aplasticcentral.com
IT IS NOW OFFICIALLY THE FIRST OF MARCH AND IT
HAS THE MAKINGS OF A GREAT DAY!
It is now 29 days since my last blood transfusion so
I have reason for cautious optimism. Last trip to the docs yielded a
27.1 "crits" count and I have an appt tomorrow so am anxious
to hear my counts. I feel much better than I usually do and am hopeful that something good is happening.
I
am tentatively attributing the moderate success to the
"ALF" (Autogenous Lymphocytic Factor) cooked up in Texas
by Dr. Re Re, the diligent use of the Sauna, daily injections of
antigens, an air cleaner in our bedroom, moving to a cleaner house and daily vitamins and supplements. If this stuff
actually works I will be happy to provide details - Still a bit
early to declare success. I remember all too well the false
progress in Texas.
My ability to focus seems to come and go a bit, but
for the most part I am able to think pretty clearly. I am
actually contributing a bit with the computer business and am even
thinking a little bit further out than next week. I am still
tentatively scheduled for cytoxan in April but am thinking maybe - just maybe I won't need it?
Some other great news to report:
Michelle (our oldest) was named Teacher of the
Year at her school in Florida - Congratulations to Michelle!
Melanie (middle) is expecting our first grand
child in May
Melissa is essentially running AEBIZ these days
and it is paying for itself
Sue is making enough money to support us (with my
SS) and is my constant source of strength and encouragement.
SO, I HAVE MUCH TO BE THANKFUL FOR AND TO LIVE
FOR.
I will keep fighting the good fight and will
report my counts tomorrow.
Reprinted from the catheters page
Hohn catheters SUCK (imho)
My Hohn catheter lasted about a week and when it came out we
discovered that it had barely enough tubing to make it from the
insertion point to my heart. I'm not sure if it was a botched
installation or the device itself but I would certainly question
anyone who wanted to stick one of those puppies in again.
I am back to a "new type" of PICC line according to the
nurse practicioner who put it in. She had a great time poking
around trying to get it inserted. My arm looks like a punching
bag. I feel like a much abused guinea pig. This is now
my fourth catheter in a little over a year.
March 1, 2002 - Oh Well
Counts today - Crits 25.x Platelets 8 - No real progress
made. Oh Well
March 9, 2002 - Cramps back I thought that I had put the
severe leg cramping behind me but they are back with a vengeance.
Platelet counts were 19 and crits 29.9 on thursday so no transfusion
this week. Had Nurse Klinger fax my other blood work - Feratin
is still off the charts 1900 vs normal high of 400. Also
something whacko with something called ALT (AGPT) that appears to
have something to do with bilibubin
- ALT (SGPT)
-
Increase of serum alanine
aminotransferase (ALT, formerly called "SGPT") is seen
in any condition involving necrosis of hepatocytes, myocardial
cells, erythrocytes, or skeletal muscle cells. [See "Bilirubin,
total," below]
- New page http://www.neosoft.com/~uthman/lab_test.html
courtesy of Dr Uthman describes it and Sue says "you're in
trouble with your liver!" And here I thought this AA stuff
woud be fun.
March 18, 2002 - Mood Swings Defined
I was never much into this kind of stuff before but have really
noticed how differently I feel from one day to the next. I
guess I always kept myself too busy in the past to pay much
attention to how I "felt." Now that I have so much
time on my hands (2 hours of desferol every day, 45 minutes to an
hour in the sauna) I have all kinds of time to do nothing more than
think. I keep busy with crossword puzzles etc, but even that
gets pretty old at times. So...on to the topic.
I experience frustration with not being able to do the things I
used to do - It is still a major effort to hold my arms above my
head for a long period of time. I get tired very quickly since
I have none of my own blood cells and the ones I have are severely
reduced. Unless I am working on a computer problem, I have
very limited ability to concentrate on anything. But then,
most days I just kick myself in the butt, remember how bad it was on
all the drugs and in the hospital and just keep on keepin
on.
I am really hoping to have enough strength to play some golf this
summer but have very little stamina and can't seem to build it up -
whenever I try, my heart starts pounding and my head tells me to
cool it. I experience varying degrees of hopelessness,
despair, anger, frustration, uselessness and self pity.
Luckily these feelings don't last a long time, but when they hit it
is a very new experience for me. I used to be constantly
filled with energy, optimism and hope.
More on "feelings" than I would ever care to
repeat...........
March 23, 2001 - My Bag of Rocks and a Full Perspective I
feel like I've pretty much "said it all" at this point,
but will add a full year retrospective.... Someone told me a
long time ago, that we each have our own bag of rocks to carry and
up until now, I never really felt like I had a very heavy
load. Sure, we had issues with our children and the job was
stressful but it all seemed manageable and was as much someone
else's personal burden as my own. Now, for the first time, I
truly have my own "bag of rocks" and for whatever reason
have been very public about sharing it. I know many others who
have chosen to carry their bags privately and the world doesn't even
know of their situation. Since I charted this course a long time
ago, I guess I will continue and add the perspective that although
the load seems pretty heavy at times, it is far less than others and
I have learned to cope with my situation. I have the love and
support of a good wife and family. I have accepted the fact that
my physical activity must be monitored. I have accepted the
fact that 2-3 hours of my day and 6-8 days per month is involved in
medical treatments of one kind or another. I am thankful that
my mental capacity still seems pretty good, I am able to function in
a manner that allows me to participate in our business. All in
all, things could be a heck of a lot worse and if this is to be my
destiny, then I shall carry on. Except for medical reports and
updates, I will probably not be giving much in the way of updates
because I have settled into a pretty mundane existence.
Thursday, March 28 On Again - Off
Again or Biting the Bullet
After many days, weeks and months of
consternation, I have finally decided to go for the high dose
cytoxan, checking into Rochester Strong Memorial on the 11th or 12th
of March for an anticipated stay of 3-4 weeks. I am told I
will be vomiting, extremely weak in reverse isolation etc. -
probably even worse than the ATG experience so I have been very
reluctant to subject my body to this again, but on the other hand, I
feel like I am playing Russian Roulette with the continued
transfusions and desferol. SO - Off I go for a quick trip to
Florida and when I get back - It's time to bite the bullet.
Tuesday, April 2, 2002 - The
Cytoxan journey begins
I am now committed to the cytoxan
strategy as I will have my first preliminary testing done today - a
Mugga and a Pulmonry Function Test - Guess they want to know if I am
strong enough to endure the pending complications. Will
provide my usually thorough <grin> explanation
of the procedure later today....MUGA stands for Multi Global
Acquisition and is a short alternative for a "Ventriculagram?"
- They inject a dye and then watch how it flows through your heart
with an XRay or some kind of camera. - It must not have been an xray
cause I didn't see shields anywhere and it was on for 10 minutes at
a time - may research that later. Pretty much painless and a
non-event relative to other things an AA person goes through. Took
about an hour altogether. And then the "PFT"
Pulmonary Function Test - Even less of an event - breathe into a
tube for about 30-45 minutes and go home. Checking to see if I
am tough enough to get kicked in the xxxx. That's it - I'm off
to Florida and when I get back I will go to Strong for Cytoxan.
Thanks for the many notes of encouragement from many of you who read
this on a regular basis. Will have Melissa keep everyone
informed as to my progress here. I went back and read about
Mindy's experieince and know that it is going to be a tough
road. She lost her hair at day 17 and was in reverse isolation
for almost 3 months.
Wednesday, April 10, 2002 - Cytoxan
Here I Come
Received a phone call from Strong and
will tentatively be admitted sometime tomorrow. Have lots of
apprehensions, but for good or bad, have decided this is the right
course of action for me. I will try to give updates when I am able.
Will be bringing my laptop etc along and may update via the old
forum or some other means if I have a slow connection
Friday, April 12 - No Room at the
Inn and Preventative Maintenance
So I received a second phone
call (this time from "Peggy") informing me that I would be
admitted to "6-3400" at Strong Memorial on Thursday
between 3:00 and 4:00 PM Remembering the terrible experience I
had with 6-3400 last time, I politely told Peggy that I would rather
rot in hell than go back to "6-3400". I called Sue
who supported, nea stiffened my backbone and said "no
way". I then got in touch with Lucy and said I would
prefer to wait until I could get on the 8th floor where they know
how to take care of patients properly.
So - here I sit waiting for a room to
become available so I can go get sick.... Meanwhile, back at
the Desferol Treatment Center (My bedroom), I get a call from my
friend Krista at CNY Infusion (Home Health Care company who kindly
delivers my daily dose of iron fighting ingredients). She
tells me my pump is due for "PM". I have been on
desferol so long that my pump needs PM - what a milestone. I
am about to endure my own PM soon.
April 15,2002 7:00 AM -On again- Off
Again, Now on Hold
Sue and I checked in yesterday about 2:00 and after meeting with the Dr and NP it
was determined that we will wait until today to make final go/no go decision. Seems they are quite surprised with my ferritin level at 1300 (they thought it was still higher) and the fact that I have gone six weeks since my last PRBC transfusion. But then when they drew my blood for CBC the HCT was 24 and they will be giving me blood today...so who knows, I may be getting my bald head after all. I'm officially on hospital time. Sleep for 1 hour and somebody comes in to wake you for something. <grin>
April 16, 2002 -
No Cycophosphamide for you old man but here, take this Biopsy
While Lucy performed my fifth Bone Marrow Biopsy, Dr. Young Jeff
told me they were going to hold off for a while and see if there was
a positive trend developing. So, we packed up the 3 weeks
worth of clothes, CD's, computers etc. and headed back to Syracuse
where I just completed my desferol treatment. I have been
through the whole range of emotions about this one, but have settled
in on one thought for now. Maybe, just maybe something is
working and I can avoid the 3-6 months of enduring cyclophosphamide
side effects and wondering whether or not I will be able to get back
to where I am now.
I feel better than I have since this whole thing
started, have been able to play golf and the time between RBC
transfusions has indeed lengthened, but platelets are still pretty
much a weekly to 10 day thing so I am really not sure where this
will all end. I am going to really try the Alternative
approach with vigor because it has apparently been at least
partially responsible for my limited progress to date. It is
extremely difficult to stay on this kind of regimen when the world
around you is enjoying ice cream and french fries and chicken wings
and soda and coffee and turkey and and green eggs and ham. So,
I shall suck it up, play as much golf as I can handle and live in a
bubble. May just go back to researching what the heck it is
that is marking my cells with CD34 and do some molecular/cellular
level research.
Counts prior to RBC and platelets today - HCT 23 and
Platelets 10.
April 21, 2002 - It's been a hell of a week in Lake Woebegon - New
Record 106.4 Reached
No, that was not the temperature outside Alice, it
was temperature inside! Went to Rochester on Monday, April 15th fully expecting to do the cyclophoshpamide thing but Young Dr. Jeff recommended that I hold off a bit longer since my time between transfusions had lengthened a bit, I looked and felt good and there seemed to be a bit of a positive trend developing. Lucy Lucy gave me my 5th biopsy, I received RBC's and Platelets and went home on Tuesday feeling great. Tuesday a truck parked in my driveway and Wednesday morning it ran me over.
I made it to Nurse Klinger long enough to confirm that temp was 102 and rising. Had to leave her office by wheel chair and arrived at good ol' CGH at 2:00 Wednesday PM. Took forever to get me checked in (my pal Judy had
obviously departed for the day as she usually streamlines the process before I even arrive). Finally made it to a bed about 3:00 only to be greeted by "Ellen" (name not changed to protect her). She was
anxious to get out and enjoy a beautiful above average day in Syracuse and failed to accurately chart my temp at 105.
Next nurse (don't remember her name because by then I was pretty out of it) also futsed around the entire shift and left me with a temp of 106. Finally my hero Kristine arrive, took charge and said "Whoa, we have to get this thing under control. My temp topped out at 106.4 (I believe that to be a new world's record for old farts who live to tell about
it). She got me on a cooling blanket and ice packs, infected line was pulled next day,
started vanco and finally began to feel like I might live. I have really had enough of these shake ups! Thank God Sue was by my side and insisted people do their jobs or I probably would have bought the farm, ranch and entire state of Texas.
Long story short, I missed the whole day Thursday and finally today (Saturday) am returning to normal AA status (light headed, lousy counts and great attitude) (yuk!) My PICC line had staph infection and had to be pulled so I will now be going for line number five (I think - I kind of lose track of these things).
I am now really torn about not doing the cytoxan thing, but am going to try to make it through the summer on the Dr. Re Re program. Need to enjoy
some time off with my wife and family, see my grandchild and play some golf. AA is just going to have be put on the back burner for awhile!
Good night and god bless from starless (that's too normal) downtown Syracuse.
April 21 P.S. What was that rumbling sound? An
earthquake? Here? This is not California Kelly. Friendly
like a newborn puppy (and nurse for today) Kelly says "I'm from California and I
didn't even notice that little twitter. I lived through the
real thing on a regular basis."
ALBANY, N.Y. (April 20) - A moderate earthquake struck the northeastern United States early on Saturday, rattling homes and shaking furniture and nerves from northern New England to Maryland, authorities said.
The United States Geological Survey said the quake struck about 15 miles southwest of Plattsburgh, New York, near the Canadian and Vermont borders at 6:50 a.m. and had a magnitude of 5.1, potentially powerful enough to cause heavy damage in a populated area.
The epicenter, which was at a depth of 3 miles (five km), was felt in New York, Boston and Buffalo, and as far as Baltimore to the south and Ottawa and Toronto to the north.
April 22,2002 - Dateline 4:45 in the AM somewhere over
"earthquake Syracuse" - I thought the earth was going to open and swallow me up.
I awoke at 4:30 and jumped out of bed for a journey to the bathroom - what a mistake as you experienced AA'ers well know. I am just now recovering 15 minutes later. My heart started pounding like it was going to jump out of my chest. I guess this is a function of what Nurse Klinger calls "Low Blood Volume and the heart compensates by working harder". I refer you back to one of my most recent entries on how I will likely eventually die from this bugger. It will either be from an infection such as I just experienced or my heart will give out from working too hard. Both have been quite frightening experiences -I don't actually fear death for me -I have faced it real time now and understand. I will fight to stay alive with everything I have for my wife, family and friends -I owe them and myself that effort - and I have a new "special
someone" (baby torres or
"b.t.") to stay alive for. our kinds grew up not having their grandparents on my side and I sure don't want that to happen to our grand kids!
So the moral of the story is this: 1. always wear gloves when working around potentially infectious areas and insist that others do. 2. DO NOT JUMP OUT OF BED WITHOUT FIRST SITTING UP AND LETTING YOUR HEAR REALIZE YOU ARE AWAKE - YOU STIFF! (btw, Sue has
repeatedly warned me about all of this but in my hard headed manner I have to experience it for myself. Speaking of Sue - Without her love, experience, compassion and dogged persistence I would not be hear to continue this exciting chronicle. She has saved my bacon on countless
occasions by getting me to the doctor when I was ignoring obvious issues, pestering nurses into doing their jobs, questioning Doctor's who didn't know or care about what they were doing and nurturing me through the hells of this baby.
Also in the spirit of giving credit where it's due, there are several great doctors and nurses who are also
responsible for keeping me around ( there have been some bad ones and to them I say -"Please find another profession where you don't hold someone's life in your hands". To the good ones (and they know who they are cause I tell
'em - Keep it up, continue to fight the fight and as hard as it must be at times, pick up the slack for the laggards. This time in particular, I need to say a public thanks to Kristine who was there at the right time and then to Michael, Laura, Kim and Julie who have been doing a good job of picking up the pieces. I also remember good care from Kelly and a couple of others I didn't even get names cause I was so out of it - but you again probably know who you are and I appreciate it on behalf of all us poor shmucks who enter the increasingly
shaky world of health care. I must again thank my primary team - Nurse Klinger, my main man Dr K. (The first one to save my life) and the whole team at HOACNY - They take their motto seriously and
always treat me with unbelievable respect, dignity and kindness. And to the official primary care team at Strong (Lucy Lucy, Young Dr. Jeff, Sharon, Anne, Rose Ann and the entire Nursing Staff - Kudos to you guys - I always feel like I am staying at the penthouse when I come to
Rochester!)
And of course my friends in Home Tonight (the whole nursing gang + Judy in admitting who has eliminated the admission hassle and Ann who first did that for me) you alwasy make a visit for a transfusion feel like it is a good time rather than the
drudgery it could be. Your constantly positive attitudes and welcoming me back like I was a returning camper always brighten my day. And since I am in the public thanking mode - Thanks
especially to my daughters and sons-in-law and closest friends who each contribute in their own
special way to help me keep fighting the good fight. Often times it is words of encouragement and other times it is a good healthy kick where it is needed most or a timely "I love you Dad", a hug or a quick one liner to boost my spirits. So - Thank you all for all your support, caring and encouragement. It means more than you can ever realize.
Now back to the chronicle and btw if you are having a hard time reading this, I will hopefully save it to the normal format shortly so you have normal paragraphs, spacing etc. I just wanted to make it sure it gets captured for posterity <grin>
In the "It bewilders me department - It is now 5:40 in the AM and I hear loudly over the hall speakers "Miss Joanna Duke 5863, Miss Joanna Duke 5863" Don't these people realize this is a hospital and people need their sleep! For God's sake this is the era of pagers - If you are so important that you neeeeed to be paged at 5:30 in the morning, wear a goxmj88&& vibrating beeper - and that especially goes for you Dr.
Newlander, Dr. Ovid Newlader - or is it CGH that has such an antiquated system that they have to announce every page. My God! It's worse than living by an Automobile dealership who pages the neighborhood for their sales people "Joe Sales Guy, extension 5583 - Joe Sales Guy extension 5583" can be heard from rooftops blocks away. Whoa, buster - you are in rare form this morning.
So anyway, the reason I started this whole mess was to report on the good and bad of the AA experience and here is the update I started about 15 minutes ago:
For the record, I was on Cephapime and Vankomyacine (both strong antibiotics - been there, done that, have the T shirt and the battle scars to prove it). Once good ol' Dr. Brody
(Infectious Disease Guru hisself) decided what the bugger was for sure, he and Very Kind Dr. Puc dumped the Vanko and I am now on a new one for me called Kefsol - according to Sue and Michael the wonder drug of 20 years ago - still around and providing wide spectrum antibiotic care. -The thing everyone worries about for me is that the more of these antibiotics I have to take the more likely my body will build up antibodies against them and one of these days they will just not work.
Very Kind tells me they actually found a staff germ
clinging on to the tip of the PICC line. - I should ask to see it - I have all kinds of
weird images of what a staff germ hanging on a PICC line would look like - The best one is of a Jules Verne like creature attaching itself to the stern of the good ship lollypop waiting to attack me if I venture out into the water. And speaking of Very Kind, she was also very good about keeping me up to date (she can pinch hit for Super Doctor K anytime)- popped into advise me that the staph germ was not the worse kind and they were going to immediately switch me off to the lighter antibiotic.
Also in the FTR department, my palms are ashen gray again until I get up and challenge my heart to get down to business. My counts (much less of a kick these days and especially having to use up "washed wanda - she's kinda weak ya know" to fight the infection:
HCT 28.2, WBC 1.3, HGB 10,RBC 2.7, Platelets 15 Jolly Fun Jolly Roger! So - Hello Sunday Morning - I can hear them starting to line up their tools and ammo for the day - I'm really only visiting you know and do not need another pike in the arm.
We interrupt this broadcast for a word from our favorite night nurse
and her side kick Kim. Laura always calls me "Honey"
and I am sure I am the only one - kind of like the friendly waitress
at the Quick Cup Diner who makes everybody feel like they are the
only ones in the joint. Favorite Night Nurse Laua and her
Faithful Side Kick Kim (She of Marcellus High School basketball
fame) just stopped in to report temp of 99.2 and BP of 119 over 60 -
"Very normal, way to go honey - they'll be sending you home
again shortly". I know damn near every nurse in CNY on a
first name basis. "Hey, I've taken care of you before - I
think it was in January of last year, no -it must have been in
April? weren't you in for a blood infection or something - I have my
very onw soap opera - I think I'll call it "As the Worm
Turns" - The staph worm if you need some help.
A nice opening cartoon for the book is a drawing of
me sitting up in hospital bed, eating my plateful of peas and saying
"Hmmm, that 106.4 must have kilt off .....a few braiiiin
celllls, as I miss my mouth."
When I get some time, I need to transcribe my notes
from Dr. Re Re center and see if I can find a publisher who might be
interested in binding this masterpiece. If someone would put a
cover on "Dr. What's His Name's Mere 100 Days", there
ought to surely be interest in my enduring (or is that endearing)
saga. Heck, I've read about others who have been kickin this
thing's butt for over 20 years. What's so special about 100
days anyway?
I've also taken to chronicling my entire life and
actually started that once quite a while ago and will probably add
it to the fodder. Who knows, I could call it "From an Ace
to an AA" (I was a pretty fair B-Ball and F-Ball player for the
"Mighty mighty Appleton Aces" way back in 1964-66 and
still a legend in my own mind. - It could start like this -
"Born on a mountain top in Tennessee, killed him a bar when he
was only three. Davy, Davy Crocket, King of the Wild Frontier -
That's the second song I every sang all by myself.
The first song I knew was "There was bullfrog,
he was sittin' on a track singing Polly Wolly Doodle all the day. He
was pickin'g his teeth with a carpet tack, singin' Polly Wolly
Doodle all the Day Fare
Thee Well..... One of my earliest memories is sitting on my mother's
lap whilst my dad went up and down the hills and between the corn
rows of an Iowa gravel road kicking up dust that could be seen way
over to Uncle Charlie's. Mom was softly singing Polly Wolly
Doodle and stroking my forehead - I had probably just whacked myself
on the side of the head bouncing around in the back seat of the Nash
Rambler with faithful sister Martha and little brother Greg.
We were on the way to Great Uncle Clarence's or maybe Betty and Al's
for some Oyster Stew and a look at the farm animals and a visit to
the Outhouse. As a city slicker, I especially enjoyed the
trips to the Outhouse. YUK!
Detour - This from the morning paper - CGH loses
$6.9 Million for the year only to be outdone by it's acquirer Crouse
Hospital who loses $20 Million. How can a Board of Directors
in it's collective Right Mind, allow a loser like Crouse to take
over CGH and run it into the ground? It's easy to see why they
are losing money, just take a stroll down any unit hallway and could
the useable bed spaced vs the number of rooms allocated to
"Staff Only, Linen, Kitchen, Head Nurse, Electrical (They need
a whole room?), etc. etc. etc. 40 square feet for patients and 60
square feet for whatever.
And then take a gander at the number of people
standing around jawing about the earthquake - What are these people
supposed to be doing all day long besides keeping the patients awake
-don't get me wrong, there are the exceptions who are bustling
around doing their jobs but far too many are just occupying space
and getting paid to do it (could that be where the extra million or
so go?). My, but we are caustic this morning Mr. Lande.
Hey - I'm gettin old, I can say what I want, when I want, where I
want. As my good buddy Jack alwasy says "Sometimes
the best people can do is to be an Asshole and if they are doing
their best you gotta love 'em" Poor paraphrasing - I'll have to
get it right from him.
I have also decide that after 35 years of earning
a living, putting three kids through college and doing the right
thing I am taking the summer off to enjoy my family and friends and
play golf when I am able. I may not be here next year at this time.
I am sure lively this morning - must be ready to go
home! I hope I've made you laugh (and probably cry a bit also) with
this latest tirade.
Some extra sub-titles just for the grin of it:
"Good morning Mr. Lande, which arm shall we poke today?"
"Who is that masked man wandering up and down the hall and where is his
faithful side kick Peeter Pole?"
"How would YOU like your Potassium, IV (burns like crazy), K-Dur a pill
the size of an unshelled peanut." How about, Not at All? Who needs
Potassium anyways - Isn't that what you get from bananas - How about a barge full
of bananas instead.
April 24, 2002 Retired and Loving
It (Back home again for those who wondered)
I have decided on a new strategy and outlook towards
what I used to refer as my curse. It is now a blessing in
disguise. I had always wanted to retire early (at 50) so here
is my chance. Albeit a bit forced, I am now officially
RETIRED. There is a sign on my office door to prove it; I get
no more paychecks; I don't answer the phone unless I feel like it
and I rarely, if ever get out of bed before 11:00 (that's cause I'm
strapped to Pistol Pete the Pole Cat trying to rid myself of the Big
Iron.
So, here's the new drill.
Awake at 6:00 - 6:30 - Have a leg cramp or two just
to remind yourself that you are not normal.
Jump out of bed trying to release the cramp -
Whooops, you forgot you have a low volume of blood so please don't
trip over Pistol Pete as you stumble around in the dark. Ah, there,
I can walk again.
Sue says - "Are you alright?" She
knows better cause she's been livin' with me for over 30
years. Of course she and I both know 'this too shall pass',
but it's agonizingly painful when it hits.
Once I recover from my alarm clock, I decide to set
up Pistol Pete for my daily dose of Desferol (2 grams please, light
on the iron and I'll maybe dose off while you do your thing.
See you again about 9:30.
7:00 - If I have not already gotten the morning
paper, Sue brings it to me with a smile and a peck on the forehead
(No lip kissing before Mr. Tooth Brush). I work the daily
crossword puzzles like all ol fart retired guys and she is off to
work leaving me to the remainder of my daily routine - Hey,
somebody's got to earn a living.
8:30 - Get an IV "push" of some new wonder
drug - this time it is Ceftriaxone (a broad spectrum antibiotic)
Don't I sound just like a nurse? I'm really gettin' this lingo
down now. So what is an IV push you ask - You stand on your
head in the corner, place the your feet firmly against the IV pole
and "push". Oh no actually, you gradually push the
ingredients of this big syringe full of medications into your IV or
catheter or whatever it is you have hanging out of your arm or chest
or feet or wherever they decide to stick it this time - I could tell
them where to stick whoops got carried away again. Speaking of
IV's and all that, they are giving up on me as a permanent type
catheter person. Too may infections for one year if you don't
mind. So now I have a temporary "peripheral IV"
(sounding like a nurse again) - the kind they stick most of the
population with when they go into the hospital for normal IV stuff.
I have a new friendly nurse (let's call her Susan) who will come
replace it whenever it falls out. (She probably doesn't know
my track record or she would not have signed on for this "home
care" duty). Yes, that's right sports fans, I now have to
be poked at least every 5-7 days for a new IV cause I am
"permanent catheter resistant" or PCR. Wasn't I
talking about retirement?
9:00 - IV push done, lines flushed (sound like a
plumber now) and ready to begin my daily walk in the park.
Since it is Syracuse and the weather only gets up to 60 or higher 3
days a year, this really means circling my expansive LR, DR and
kitchen metro-plex about 7,482 times to make a mile (It's a short
putt from one end of the house to the other now). Do I sound
bitter about our new house. Not me, I'm just happy I still have a
shirt on my back after the "broker boys" finished with
me. I just got a phone call from my new replacement broker who
informs me that if I want to get what is left of my once reasonably
healthy nest egg, I have to pay them even more money. Those
assholes are unbelievable. They got me going, lost over 50% of
my retirement and now they are going to charge me to get my money
out - Morgan Stanley for the record! and just to be an Equal
Opportunity Bitcher, (EOB), Merril Lynch did the same the last
time there was a crash, er "market correction." I am
very disenchanted about my retirement but have decided to suck it up
and face the facts. Instead of jetting between my huge houses
on either ocean, I'm sick, broke and eating grains, greens and
beans to try to get my life back - what's to be upset about.
Now that I have gotten that off my chest - my doctor (read Sue) says
it's good therapy........... I actually am going to give the
macrobiotic diet another try, eat nothing that a cow would not and
look how big and healthy and content they are.
10:00 - Stir up some bacon, eggs grits and
hash brows - or more likely some oatmeal - hold the milk and sugar
for me. Hmmm this is really tasty (not!) FTR, I am
getting used to eating this stuff and once I get all the crp out of
mys system it actually tastes pretty good. I can actually
taste again. Line up my daily injections ala Dr. Re Re - For today's
campers we have vial of Alpha Lymphatic Factor (ALF) and some tasty
tidbits of bacteria, virus and grass. Tomorrow's menu will
include Oris root, foods and some other delicacy only we know about.
Also get out your tri-salts niacin etc. a couple of needles.
10:30 - Time for the only benefit of this whole
ordeal - My daily sauna treatment: Turn heat to 160
degrees, toast myself for 30-45 minutes lightly stirring until brown
or crunchy
to the touch. Snoozing recommended. One last ugly thing
to do after the sauna, take a shower, load up on the after sauna
treats and Oh My God it's Noon. Time to start my retirement.
Sue just came home from work
(detoured to give blood - We AA types thank her and all the fellow
blood and platelet givers - We wouldn't be here without
you!)
April 25, 2002 - A visit to the health food
co-op
Been there before but just to let everyone know, I
am officially on the macrobiotic diet again and bought myself some
organic stuff to support my new habit. We'll see how long I
last. Counts and weekly dr. visit were non-events - Going back
next week to be re-checked. "Counting flowers on the
wall, that don't bother me at all, smokin' cigarettes and watchin'
Captain Kangaroo, now don't tell ME, I got nothin' to do."
April 30, 2002 - A philosophical good bye to
April
I find myself "philosophic" this morning
as we say good-bye to April showers in dreary Upstate New
York. I wonder again why I did not make the move to a sunnier
climate when I had the chances. What is it that ties me to
this "neck of the woods"? For one, it is Sue's
family and for another it is the close friends we have developed
over the years. Even when I visit other sunnier climates, I
find myself longing for the "home" of Central New
York. It certainly has its many drawbacks, but like it or not,
it has been home to us for now over 20 years and likely will be
forever. And so we press onward...
April was supposed to be the month that I looked AA
in the eye and said "enough already" - I was planing the
cyclophosphamide assault and had steeled myself to accept the
negative side effects in hopes of a lasting answer to this bugger,
but alas, it was not to be so. Young Dr. Jeff and his faithful
sidekick Lucy Lucy said "Not just yet, old fella,
we want to you to wait and see if maybe this thing will work itself
out naturally. You are looking really good, going longer between
transplants and chemo does have its risks and downsides. Go home,
get sick again and we'll talk again in May." That's not
completely accurate in it's paraphrasing, but it is what
happened! So, I got sick again, learned about IV pushes and am
back to spending my days chelating, in the sauna and other nasty
things. But, I do feel reasonably well on the au natural diet
and have some level of hope that maybe this will work. I read
about some successes on the AA/MDS list serve with
Homeopathic/Natural strategies so will "buck it
up".
Last night we had ground sesame, almonds and beans
over rice with a little Kayl to brighten it up - Yum! The day
before, I made the ugliest beet based puree you would every want to
see, but it actually tasted pretty good. So, for the record,
my diet is as close to a full blow macrobiotic as I can stand.
I have various greens almost every meal, beans of some kind and a
healthy portion of rice, kashi or some other exotic grain that we
discover. I eat a limited amoung of vegetables and some fruit
but try to make sure everything is "organic" - i.e. no
pesticides or unnatural fertilizers used in the growing process. The
theory is that if I do this for six months, I will rebuild my immune
system and if will stop inappropriately marking my platelet cells
for destruction. If I can last on this thing for six months, I
deserve to be cured and a medal besides. My cravings are
become a little less obtrusive, but I still miss many of my old
favorites, like a good burger, french fries, a chocolate shake, pork
roast, roast turkey, ice cream, fried eggs and ham, oh what torture
to have to list these things! (Just kidding, I really don't
miss them as much as I anticipated)
So now for the philosophical look back. When I
first started with this disease, I went through the predictable -
why me?, I can beat this thing, Hopelessness, Despair, Anger
etc and settled in on - I am going to take charge and figure out how
to win the battle. The good news, I am still here fighting and
actually have a lot more energy than I didi before. The bad
news is that I am still transfusion dependent and am easily
fatigued. Most days I maintain a pretty positive attitude
supported by Sue, girls, sons-in-law, family, friends, medical
caretakers and the people who send encouraging notes to the ol'
grizzled and scarred webmaster. I also read the AA/MDS list
serve regularly and see lots of positive reinforcements
there.
I also decided that I needed to get my life in
order. I needed to rebuild my neglected relationship with my
wife, my family and God and needed to get my financial affairs in
order. I had become almost completely focused on trying to
build a company at the expense of virtually everything else.
If this AA thing was intended to be a wake up call, I heard the
alarm and began a frenzied effort to set things right.
I can now happily report that my relationship with
Sue is strong, I have rebuilt relationships with family and friends,
have my spirit intact and have at least weathered the storm
financially.
I consider myself one of the lucky ones in that I
got on disability early, got my financial affairs in order and am
free to focus almost exclusively on fixing myself. I look
forward to the day when I may again rejoin society but figure I have
paid my dues and deserve this chance to focus entirely on making
myself well. I feel for the many other AA types who are still
struggling with everyday lives, raising children, doing the 9-5
routine or maintaining a household. Their lives have to be
much more difficult than mine. I guess I complain a lot
here just to get it off my chest because in the long run, I do feel
fortunate to have such strong support from Sue and others.
They keep me smiling and give me the much needed "kick in the
pants" on days when I get feeling sorry for myself.
One thing that continues to strike me is the comment
"but, you look so good". It is both a blessing and a
curse of our disease that we may look good, but we all know that
there is definitely something wrong 'cause we spend way too much
time sleeping and feeling down than is normal. We also know
that our blood is not doing what is supposed to do and the weekly
Dr. visits serve as constant reminders that we are at best just
holding this ugly monster at bay. Another observation is that
there are far too many "quick cures" out there than seems
reasonable. Everything from shark's oil to alfalfa greens have
been recommended to me. I sometimes wish I could try them all,
but really feel like I need to choose one approach and stay with it.
Everyone means well (I hope), but it is rally hard for me to believe
in anything at this point. I am beginning to believe that a
healthy lifestyle is the absolute key and virtually anything will
work if you do the fundamentals. Kind of like football - if
you don't do the fundamentals like blocking and tackling better than
the other guys, then it doesn't much matter that you have a couple
of "Hail Mary's" every once in awhile.
I am at peace with myself and God. That
bothered me early, but I have a strange inner calm about my
mortality. I hope that I will be around for a long long time,
cause I enjoy so many things about this life. But, I have
accepted the fact that I will not live forever and have come to
terms with my own inner beliefs about God, eternity, etc. I
prefer to keep much of it personal cause it is between me and God,
but rest assured that I have the inner peace I sought when first
confronted with this disease.
I still struggle a bit with our financial
position. Yes, we have it under control and we are a lot
better off than many others, but.... I always wanted to "hit it
big" and got pretty close a couple of times, only to have the
roof fall in. The events over the past five years (both personal and
public) have been financially catastrophic. I am not sure if I can
ever rebuild our nest egg to what it was, but have finally accepted
the reality of it all and am trying to figure out where to go from
here.
I have far too much time on my hands and continually
prod myself to get off my butt and volunteer at something but just
can't seem to get it going. I will continue to search out ways
I can use my talents to help others. I would love to figure
out a way to use my music, but have not yet been able to determine
how that may be.
Sue tells me I should formalize all my ramblings
into a book and I would like to. I have tons of notes and
journal entries that need to be captured, edited and
organized. I used to be pretty good at that sort of thing, so
will take a pass at it I guess.
OK, that's it for the philosophical look back.
Bye
May 2, 2002 Collapsing Veins, Hot Packs,
Infections and the Proof is in the Platelets
Now that I am "Piccless", I have a new
issue. Went in for platelets yesterday (8000) and before I was
done, had been poked five times, hot-packed twice and finally had
success. I can actually see my veins shrinking away from the
needles! I see other people's veins running through their skin
and mine are nowhere to be found. And, now we are having a
heck of a time settling on a diet that makes sense. Sue is
desperately reading all kinds of stuff and discovering that leafy
greens are no longer a good idea cause they are high in iron (last
thing I need is more iron). Also thought lentil beans were
good but they are actually used as a natural blood thinner.
And on and on and on. I was trying to do a rotational macrobiotic
diet but that is beginning to look like a bad idea so may go back to
a regular rotational.
So, had a nice talk with old Dr. Jeff (the one who
saved my life), yesterday and he says the following: The staph
infection could have closed off your heart valves - you were lucky
to get it under control in time. So - for you AA types out
there - at the first sign of infection (fever over 101 - get your
ass to the hospital and make sure you get somebody on the job who
knows what they are doing - request to see the Infectious Disease
Dr. or make sure your hematologist is involved). I would be
willing to bet that many of those we read about who go into the
hospital and do not come back out are not treated quickly enough for
these deadly infections.
Also talked about the latest BMB results. He
talked with Young Dr. Jeff and they discussed the results.
Rochester apparently is seeing some minimal improvement in the
cellularity of the marrow, but Old Jeff says they're groping.
He says the proof is in the platelets and they have not shown ANY
signs of improvement since the beginning. I am seriously
leaning towards cytoxan or BMT, but have to give this alternative
life style a chance. October is my new deadline unless
something else happens. Oh - some good news, it's still
raining in Syracuse so at least I wouldn't be able to golf
anyways. Old Jeff says I should try to stay active and at
least try to play some golf - all I need is a sunny day - Maybe in
June.
May 5, 2002 - Big Swing even in One Day
Felt really lousy the past few days - hardly left
the house and pretty much just moped around feeling sorry for
myself. Then today, Sue and my buddy Jack gave me a good kick
in the pants and made me go to the golf course. Wow - it felt
great, I did OK and feel like maybe I can do this thing. Put
in a full day of sauna, golf, cards, dinner out with friends and
here I am at 11:54 still going. My heart really pumps hard if
I over-exert, but I just have to pace myself and enjoy what I can
do. I never really liked riding a cart for golf, but it that
is what I have to do, then so be it. Besides, I have to get
ready for the 2nd Annual Bruce Lande Open on August 4. We
raised nearly half the money needed for the Dr. Re treatment last
year and hope to make up the difference this year. Life is
good!
May 6, 2002 - Snakebit or Anything for Strokes
So the ER doc says - "They call that a 'divot'
when you hit under the golf ball - and how did you get it in your
eye?" And I say, "It wasn't easy Doc, you wanna play for
money?" According to friend Jack, I will do anything for
a couple of strokes and friend Mark who came to my rescue says I'm
snakebit.
There I was on the 14th hole taking the advice of
Old Dr. Jeff to be more active and I take a swing at my golf ball
propped up on a tuft of grass and hitting a little behind the ball -
well maybe a lot - I splash this big chunk of mud up into my
eye. New friend, Joe Duffy takes one look at my eye and
immediately carts me to the clubhose (as far away as I can be from
there by the way and a long walk without a cart. (Yes, from now on I
will be using a cart -as much as I would prefer to walk, I could
only make it about 1 1/2 holes yesterday on my own). So I gets
to the pro shop and there are Mark and Bill looking at me like
"What's next out of this guy?". Mark washes out my
eye and says we're going to the hospital. I had not yet seen
my masterpiece so I had a hard time understanding all the
fuss. To the CGH ER to see my old friends (Ran into Annette,
Bob O and Sue P.) and they all have the same look of
disbelief. "You were doing what?"
Doc comes in and takes a look and says in his best
imitation of Groucho Marx (looks a bit like him actually and just as
funny), "You have what we call in the trade a Subconjuctival
hemmorrhage." I finally go take a look for myself and I
look like I've been in a brawl. What used to be the white of
my left eye is all swollen and blood red - Blood?! - Oh my God, I
don't have any platelets. "Not to worry", says
Grouch, "If you were bleeding, your vision would be blurred,
but I'll call my buddy Jeff just in case." Old Dr. Jeff,
says "Give the boy some platelets, you know how those AA types
are, might have another bleed to the brain or something. And
Oh, by the way do a CBC on him."
So, my day of activity turns into another
"health care extravaganza" per Dr. Manfretti (you know him
as Groucho) and he even gives me a hand drawn picture of my eye for
posterity. Pretty much a normal day for a normal person doing
something stupid, except for the platelet episode. Back on the
golf course by Wednesday or Thursday with protective
eyewear.
Dr. Manfretti, says I should take up tennis:
"It's safer and it doesn't take as long." But will I
get strokes?
May 11, 2002 - It's All About Choices and Hoping
for Magical Advances
At the risk of repeating myself, I decided to
capture my thoughts regarding the choices we face as AA types.
In the beginning, we have to simply make the choice of how we will
react to the news. Why Me? What did I do to contract this
weird thing or worse yet, have my child be afflicted with this ugly
thing. It is time to reset my life and my priorities. I need
to spend more time with my family. I need to rebuild
relationships that were important to me. (Later on it became very
important to me to make sure I am around to get to know my new
grandchild.) And the simple pleasures of being with the woman
I love, our family and friends.
Will we be victims, or will we fight? If we
are going to fight, how will we go about it. One of the first
questions a doc will ask - do you have any siblings? Have tme
HLA typed for the possibility of a sibling BMT donation.
If I don't have a sibling match, what next? Do
I go for a Bone Marrow Transplant right away? What are the odds of
success? Could I die from this or be worse off than I am now?
Should I try other medical treatments? What are they?
ATG? What are the side effects and are what are the odds of
success? If the ATG and cyclosporine protocol does not
work. Should I try it again? What makes me think it will
work the second time if the first time just made me sick and gave me
my first real bout with death? Should I eat differently?
Exercise more? What about my life - family, spiritual,
financial. What is to become of my family if I am not
here? If ATG # 2 does not work - then what. There are
lots of other somewhat experimental options and maybe we need to
look into alternative treatments. They start coming out of the
woodwork and all by well meaning friends, family and
associates. How about this supplement, or that one, or this
diet, or that one or you need to chelate the harmful chemicals out
of your body, but be careful because chelation is very harmful to
your organs. And if you eat too much of this food it will
cause this problem. Man, it gets really complicated and
confusing and you really don't know who is right or
wrong.
Should I consider a stem cell transplant - will it
work for you? How about T cell depletion, or maybe a chemo
therpay (cytoxan or cyclophosphamide). Maybe now is the time
to really seriously re-evaluate the Bone Marrow Transplant with full
irradiation but will I make it through such a procedure? And
even if I make it through, what will my quality of life be
like? Should I just be satisfied with the existing quality
even though I have no stamina, am transfusion dependent and
risk dying from an infection (2 close calls already).
My choices used to be to got to the movies or out to
dinner or business decisions that seemed important at the time, but
pale in comparison to these truly life and death decisions.
If nothing that medical science has cooked up
appears to be working, I will venture into the world of
"alternative medicine", but wow - talk about a pandora's
box. Consider this short list of alternatives to
explore: macrobiotic diets, herbs, shark's oil, alfalfa
sprouts, juicing, vegen, holistic, homeopathic, religous focused,
accupuncture, yoga, sauna, chelation therapy, oxygen therapy, every
diet ever invented, chemical sensitivites, etc, etc, etc.
Then how about ongoing research into genetic
re-engineering and the other medical research that is targeting much
more prevalent diseases but may have a spill-over effect on AA and
MDS. Or maybe I can do my own research and find something that
the researchers have missed when it comes to AA specifically - (Been
there, doing that, have the T shirt and ball cap). The
research is done on mice and the likelihood of this research
impacting us in time to save our lives appears to be pretty remote,
but I continue to press on hoping that there is something somewhere
that will have an immediate impact. Maybe in Canada? Or
China where they have many years of experience with blood
disorders? Should I eat more rice or less or rotate my
foods?
Should I try another catheter to avoid the almost
daily poking of my collapsing veins? Is it time for the
dreaded sub-cutaneous desferol infusion pump. Many on the
AA/MDS list server have been doing this for a long time and I had
hoped to avoid it. It is beginning to look like I no longer
have a choice. The desferol is an absolute requirement to keep
the iron from transfusions from being absorbed into my organs and
causing irreparable damage. I remember reading about this early on
and thinking that when I had to do this I was in big trouble.
Am I, or does this just become something similar to what diabetics
have to do?
Virtually every day is now consumed with these
choices. And some days, I just want to forget it all and go
and try to live my life without these constant reminders. So I do
that, and lo and behold, something happens to shock me back to
reality or I do my 4-5 hours or treatments and what else is there to
do but think about how to beat this bastard!
And since we are on choices, what do I do with the
rest of my life? How long do I have? Is it many years or am I
kidding myself? I read about fellow AA types dying on a fairly
regular basis - some do BMT's, some do not - most within a year or
two after contracting the disease. So, if I only have a
limited amount of time left, what will I do? In my case, I
have the luxury of retiring early. My wife works full time and
I have social security, but I wonder about others who do not have
this option. And do I try to do something more meaningful with
the time I have left or do I try to enjoy the time I have
left. More time with family and friends. More golf - I
really loved golf in my early years but had put it aside a couple of
different times to pursue career and business interests. OK -
Golf it is! And we might as well go full time and move south
in the winter. Thanks for letting me sort all this out in
public. As reported previously, I will give the special diet
and Dr. Re Re treatment protocol until October and if nothing has
changed by then, I will opt for cytoxan. Meanwhile I will be
visiting my new grand child, spending time with my wife family and
friends, on the golf course, or implementing my latest theory of how
to make money on the stock market.
May 12, 2002 - Not Normal
I've know for a long time that I am not normal and
my family will definitely second that thought, but I have often
wondered why my heart seems to really go whacko sometimes and I
believe it is arrythmia which in my
case is being caused by, among other things the desferal, a lack of
potassium ( I sometimes take K-dur to summplement potassium) and the
low blood counts causing my heart to work harder to get oxygen
distributed to my body (especially larger muscles when I try to
exercise.) If I try to exert myself, my heart starts
pounding like it wants to jump out of my chest and it also feels
like it is skipping a beat at times.
May 21, 2002 - Ho Hum
After some excitement of late, I
have hopefully settled into a ho-hum state for
awhile. Eating rotated macrobiotic/vegen diet,
taking shots, checking for blood counts and
transfusions seem to be about the same. I
could actually live like this. I still can not
exert myself and I get tired pretty easily but it
beats the infections etc. I started on my sub-cutaneous
desferal pump today and it much simpler than I had
imagined. The pump and a week's worth of
medicine are housed in a small electronic device
about the size of my first palmtop computer. It's
actually pretty slick and painless. I stick
myself with a needle about 1/2 inch long, connect
the tubing and let it ride for 9 hours. I
slept with it in and did not even really notice
it.
May 31, 2002 - Ho Hum Ho Hum Ho
Hum
I'm settling in to a routine and
like it. Guess I can now graduate to helping
others. Feel free to write or call me anytime
and I will help in any way I can. Phone is
315-425-1162 and email is
bdl@twcny.rr.com
June 3, 2002 - Did We Tell You We
Are Grandparents
Sue and I, and then Melissa spent several days with
Joshua and the proud parents. He is
undoubtedly the brightest, best looking and most
well behaved child ever - Just ask his Grandma! As
Yoda would say - Proud, we are! I hope to be around
to take him to his first Star Wars movie.
Sue and I played golf on Sunday.
Jack, Mark and Jim and I played on Monday. A
year ago at this time, walking was an event so I am
grateful for the opportunity to have been on the
course. I played like a stiff, but then buddy
Jack reminded me that I was "able to sit up and
take nourishment" and should be thankful for
that. Even though we played terribly (4 X's between
us), we decided it was a heck of a lot better than
walking an IV pole in the hospital!
On a sour note, I have the old
"blood in the throat" symptom and have
some pretty prevalent petichia around my middle (the
stomach muscle). Was hoping to skip the doc
this week (platelets were about 20 last Thursday)
and stretch out the TBT (Time Between Transfusions)
but not sure it would be the wisest move I could
make. Guess I better move my appt in from
after to before the week-end. Those of you who
are patients know exactly what I mean. It is a
scary event to consider going through a week-end
without your trusty little platelets safely infused.
What IS that beeping sound? It
sounds like an alarm clock - I'm already up at 4:46
AM so it can't be an alarm clock. Oh, it's my
sub-cutaneous desferal delivery pump warning me that
I only have another hour before I am done. It starts
beeping when there are 4 units left out of 18 so if
my calculations are correct, and I started at about
9:30 PM, then wake me at 3:30 AM it will - Thank you
Yoda for that bit of wisdom. But here is the
question then, was it the beeping that woke you or
the cramps in your legs? No, the cramps have
not gone away now that it is summertime (and in
theory warmer) in Central New York. They are
certainly not as bad, but just a gentle reminder
that all is not well with the world. See you
in Home Tonight in the next couple of days.
Josh's Gramps signing off.
June 4, 2002 - $41.34 in a Mini
Basket????
I have always been impressed how my
wife can stretch a dollar but today I am even more
so!. I went to Price Chopper and Wegman's for
some organic/natural stuff and came home with
essentially one bag of stuff for over $50.
Don't expect to go cheap down the organic
aisle! Tried Price Chopper first and couldn't
find anything au natural except a small corner of
organice veggies so I bought some for $11 and headed
across the street to Wegmans (For you "out of
towners" they must obviously be competing
grocery stores chains, eh?)
So I gets to Wegmans and there in
the virtual middle of the store is this relatively
large natural foods sections and I set about picking
up the essentials like safflower oil, apricot oil,
some boxed stuff (be careful to read the label bubba
cause you don't want anything with lots of unnatural
ingredients) -- a box here, a can there, some frozed
stuff (I know, but sometimes even lazy ol' me is in
a hurry - maybe to get to the golf course? And
lo and behold I get to the checkout and I still this
friendly young clerk that I'll take the whole mini
basket for $10 - He smiles and starts to beep my
food - $10 gone, now $20, how about $30 - Oh
my God, Myrtle he's heading for $40! And
that's that - $41.34 at Wegmans plus the $11 at
Price Chopper and they spread it out into lots of
plastic bags but I know when I get home it
could all fit in one good size double bagged brown
bag!
I'm going back to watching my stocks
plummet - it's easier to take! Since my life
has obviously evolved into one of utter boredom, I
will start keeping track of what I eat on a daily
basis and you may visit the New
Menu section of this here same website.
This is for those of you who are really bored!
If you are still working for a living and want the
short version - here 'tis - If it has anything in it
that you used to like to it, give it up! We
now survive on Yams and romain hearts, carrots
and rice and beans - but only organically grown
stuff.
But- here is the bright side and
there is always a bright side - the trip down ,
memory lane (the meat section) is a heck of a
lot less expensive than it sued to be. I'll
take my veggie burger any day (lies are permitted
when you own your own website). Good night
Luke, Good Night Obie Wan Knobie III, Good Night
John Boy, Good Night PAPA, Good Night Melanie, Good
Night Josh (wanna
see some pictures?), Good Night Grandma, Good M
M & M. Good Night Abbie, Good Night
Mike. Good Night everyone.
June 16. 2002
Happy Father's Day to Me and All
of You Who Are Lucky Enough to be Fathers (And All
of YOU!)
Last year at this time, walking was
an adventure and yesterday I played 18 holes of golf
with my Son-In-Law, Fred trying to out-drive
him. And I will spend this Father's Day
with my three beautiful daughters (Michelle, Melanie
and Melissa), my incredible wife Sue, our new
grandchild Joshua (have you seen the pictures?),
Son-In-Law, Mike and future Son-in-Law Richard is
here in spirit. Michelle was just engaged and
radiates more than her diamond.
Thanks to you Sue, for making me a
Father and to the SEVEN of you in our inner circle
of Bruce and Sue Lande descendants. What a
remarkable treasure it is to have the love of so
many people including my own siblings, their
children, Sues' huge family and our close
friends. Dealing with AA has been a blessing
in disguise as I finally realize (took a huge bonk
on the head) what is most important in life.
Thanks to everyone who reads this
for helping me share my feeling and you sharing
yours. After my family and friends, I now rate
this effort as one of my proudest accomplishments.
Hardly a day goes by that I don't get a note from
someone and I appreciate every one of
them.
June 20, 2002 - Golfing Up a
Storm
Early on , I distinctly remember
reading form Neil S at the AA newsletter how he was
playing golf (walking 9 holes every day) and saying
to myself - "Right, like I will every have the
strength to do that again", but here I am,
playing 18 holes several times a week and 9 when I
don't have time for 18. I still can't walk,
but have free use of a cart (bartered their web
site) and a lifetime membership that is now getting
lots of use after several years of neglect. SO
- for those of you who are new to this beast, take
hope! I am accepting my new lifestyle and what
the heck, I don't have to mow the lawn or do any
heavy lifting and I can now blame all my
inadequacies on the disease! The daily
desferol treatments, weekly doctor visits and
transfusions (3 weeks for platelets and 4-6 weeks
for PRBC) have evolved into nuisance status and I
try to cherish every minute that I have.
Nephew Kent dropped off some college
text books on Microbiology and Genetics so if I can
squeeze in the time between my investing and golf,
will try to research AA, apotosis, etc. again soon,
but only on rainy days after the market
closes. I again have Someone to Love,
Something To Do and Something to Hope For!
July 19, 2002 - Success is at
Hand!!!
I am cautiously declaring success
for the alternative strategy. Those of you who
have been following my progress know that I was
pretty skeptical at times and I still struggle with
the regimen, but in my case, I now truly believe
that an alternative approach that focuses on
cleaning up the immune system is far better than the
toxic drugs being prescribed by the medical
community. I was sick, sick, sick from all the
ATG, cyclosporine etc and have been well, well,
well, since starting on a cleaner diet and doing the
detoxification process. I am now averaging
over two months between RBC transfusions and over 3
weeks for platelets. I have a long ways to go
before I would say I am normal or healed, but the
first step was to "stop the bleeding" (the
pun intentional) and that has been accomplished.
My strength level is virtually
unbelievable compared to when I had serum sickness
and blood infections from catheters. My only
real constraint now is to not exert myself of try to
go up hills. As long as I am reasonably
careful, I can walk and talk and golf and take out
the trash and all the things a normal person would
want to do.
So, if you are on the fence re
treatments, I highly recommend giving the
alternative approach I have outlined a try - It
really can't hurt and you may be surprised at the
success. It certainly is much less invasive
than an BMT or ATG and you can always do them later
if the alternative strategy does not work. I
would be more than happy to share my strategy with
anyone who wants to know more about it.
July 28, 2002 - That Tired Old
Feeling Returns
I have been extremely tired the past
few days. Have been sleeping much more than
normal again. It must be time for a refill -
But, hey it has been over two months since my last
transfusion. See the doc on Thursday so will
know for sure. My hematocrit was about 28 last
time and holding at that level for a long time. I
have been following the program pretty well so am a
little disappointed but when I signed on for this
gig, they told me not to be in a hurry. I am
almost a year into the program and see
progress but now want to put AA behind me and get on
with my life.
We have a new major concern in our
lives. Josh's official diagnosis appears to
be Arteriovenous Malformation - this website http://www.childrenshospital.org/cfapps/A2ZtopicDisplay.cfm
has details and I will be doing my
thing to learn more about it. Melanie and Fred
(Josh's parents) are both very internet literate so
have already built up a bunch of information which I
am starting to log at http://aplasticcentral.com/Josh/Josh_Intro.htm.
August 1, 2002 OK To Get Excited!
Main Dr. Jeff (Kirshner) says that
it is excellent news that I have gone 70 days since
needing blood and my hematocrits are holding at
28. I wasn't sure and was pretty tired on the
golf course the other day. He says it was
probably the heat and that I need to be more careful
than others re to playing in the heat.
Although 28 is good for me it is still well below
normal (40-60). But net, net is I am making
progress with the alternative strategy and he says
just keep doing what you are doing because it
appears to be working!
He confirmed that any blood cells
left over from my last transfusion are now dead and
what is in my body now is MINE! I am creating
healthy RBC's and my immune system is not destroying
them. Still have lots of work to do but the
light at the end of the tunnel is no longer a train.
August 3, 2002 Bubba and the
Steep Hill - Happy Birthday to Sue!!
Happy birthday to the love of my
life for over 33 years!. You are still my
sunshine!
About three months ago, I went for a
walk on our new street and strolled down to the
bottom of our hill only to discover that I could not
make it back up the hill. I had to rest about
five times on the way back. Well, yesterday, I
went down almost to the bottom and walked back up in
one trip! This was after I had already walked
1/2 hour in the morning and about 20 minutes in the
afternoon. I decided to give it a try and was
amazed to discover that I am actually getting
stronger.
August 3, 2002 Documenting What Works for
Me
If you have been reading my journal
or discovered this in a different fashion, this area
has been used to document my progress with an
alternative approach to healing my immune system
after contracting aplastic anemia. I decided
to summarize my approach to save you the reading of
the entire section, so here goes:
I was diagnosed with AA in January
of 2001 and spent the first six months going through
ATG (2x), cyclosporine, steroids and a whole bunch
of very toxic medications. I almost died 3
times, got serum sickness, septocemia and finally
decided to listen to my wife's advice and try a
different approach. She is a Registered Nurse
and has been a patient of Dr. Sherry Rogers, an
Environmental Allergist MD here in Syracuse.
After hearing of my symptoms, Dr. Rogers
recommended that I contact Dr. William Re at the
Environmental Health Center in Dallas, TX. I
was extremely skeptical about the approach, but
after much cajoling, decide to make the trip to
Dallas.
We spent about two months in Dallas
where I was tested for many different things and was
eventually placed on a regimen that I believe is now
working for me. One of the primary messages is
that my immune system was out of whack and probably
had been for many years. The regimen is
designed to get my immune system back in balance
through the use of antigen shots, a rotational diet
and detoxification program which is based primarily
on an infrared sauna.
I have essentially developed my own
strategy which is primarily based on this regimen
but also includes a good exercise program ( exercise
at least 30 minutes a day using various stretching,
walking and light weights), lots of fresh air and
sunshine. I east mostly "grains, greens
and bean" which means I eat a lot of lettuce,
rice and beans of various sorts. I take
a mutivitamin daily, a B complex supplement (may be
modifying that based on recent input from Marla),
Code Liver Oil, Every day Essential oils and
magnesium for my leg cramps.
I am now at a point where I am
strongly recommending this approach as I now have a
full year of experience. I have gone through
many phases and still struggle with the discipline (
I cheat once in a while just to maintain my sanity),
but now firmly believe that this "alternative
approach " is the "secret" to my
success in battling aplastic anemia. I am not
selling any live saving supplements and have no axe
to grind. It just works and I encourage
everyone to give it a shot.
I will likely decrease my activity
on this website for awhile as I am finding other
things to do with my time, but if you would like
more information, feel free to post question on the forum
and I will do my best to respond. I am not
responding to personal email much anymore
August 12, 2002 - More on What is
Working for Me
I had another very good Dr. visit so
am really beginning to believe in my approach.
Counts are holding and now I will focus on trying to
reverse them rather than just hold them.
A couple of things I often
forget to mention:
Importance of daily exercise and
sunshine. I do 30 minutes of walking and light
weight lifting almost every day and I also make sure
that I get at least 2-3 hours of fresh air sunshine
every day (not always easy in CNY so will likely be
spending the winter in a different climate). I
also updated by Vitamin and Supplement intake at http://aplasticcentral.com/Alternative_Medicine/vitamin.htm.
I have modified this list fairly extensively based
on personal results and input from
others.
I am adding COQ10 back and dropping
the B complex after seeing that all the stuff in the
B complex are replicated in my multi. One
thing I had forgotten about is the necessity to take
the multi a couple of times a day so will start that
today. I also must tell you that I do a daily
colon cleansing routine using a coffee enema as
prescribed by Dr. Sherry Rogers in her book
"Tired or Toxic."
I also heard a news tidbit the other
day that advised against exercising in the AM as it
supposedly works against the immune system.
Supposedly it is better to exercise in the PM as
there is a hormone generated in the AM that
negatively impacts the immune system. Will try
to change, but the morning really works out better
in my routine. Also must mention the change in
my lifestyle. I have definitely changed from a
"Type A" to a "Type B" and have
consciously reduced the stress in my life.
All of these changes and my daily
routine are working well and it is time to summarize
and synthesize which will be my next project.
August 16, 2002 - Let Me Count
the Days
It is a little hard to believe, but
it is has now been 84 days since my last Red Blood
Cell Transfusion and 24 days since my last Platelet
Transfusion. I continue to feel stronger every
day and my count last Wednesday actually went up for
the first time ever! It is a small step, but
at this point a small step feels pretty darn
good. Platelets went from 12 to 14 and
Hematocrits from 27 to 29 previous week. They
first stabilized and now appear to actually be
edging up. I am becoming even more diligent on
my diet as I am swearing off red meat entirely,
having a little chicken once in a while but only as
a diversion rather than a major event. I am
actually trying to get off that too. I eat
loads of fresh and cooked veggies, lots of lettuce,
beans nearly every day and lots of rice. I can
actually taste the veggies and can eat lettuce
without any dressing whatsoever. In the
"remember to mention department" - I use
only deodorant, no antiperspirant as it keeps the
toxins in one's body. I am diligent about
daily sauna and other treatments as described
earlier and now take the vitamins and supplements
throughout the day rather than all at the
same. This allows for better absorption.
Still have occasional cramping and continue to
tweak the magnesium etc to minimize this
problem. All in all, the mood around here is
very positive and I am beginning to feel almost
normal.
August 18, 2002 - AA Patients =
Super Humans
When I was the proud owner of a
Hickman Catheter, I would tell my younger friends
that I was an alien and that the "wires"
hanging out of my
chest were plugged in each night to be
re-charged. Now I have a new theory.
Those of us who have AA or similar diseases are
actually "super human" because our blood
cells work so much better than mere
earthlings. I cut myself pretty badly
yesterday and my measly 14,000 platelets rushed to
the scene of the accident and performed very well -
let me see one of you normal types do that!
Playing golf in the high 70's and expect to be
breaking par before too long. - How sweet it is!
August 31, 2002 - Another Month
and Battle Scars Discussion
If you have read this far, you
know that I have formed a very strong opinion about
the use of drugs, BMT's and other radical treatments
for AA. Granted the ATG and cyclo regimen did
not work for me so I am certainly slated.
Maybe if something had worked I would not be singing
this particular tune. But alas, they did not
and I reluctantly chose the "alternative
approach" as a last ditch effort.
In retrospect, I see that the drug
strategy, the ATG etc are experimental efforts to
combat a disease that the medical community knows
very little about. When they know little about
something, they do their best by throwing one
experimental drug after another at it.
Whats worse, I was subjected to catheters, PICC
lines and other stuff that almost killed me 3
times. It was not AA that was going to kill
me, it was the negative reactions to the invasions
into my body. The catheter and PICC line both
became infected causing sepsis (blood infection) and
the ATG wiped out my immune system leaving me
defenseless to even the slightest bacteria.
I now wear physical scars from the
catheters and mental scars from the drug
treatments. I have decided that I will NEVER
again subject myself to these drugs, a BMT or any
other radical treatment. I will fight AA on my
terms, using my strategy and truly believe that I
have a much better chance of winning the battle
using this approach than any drug treatment may
offer. If you have AA or know someone who does,
I encourage you to consider the lifestyle change and
protocol I have described.
As for me, I am regularly playing 18
holes of golf 2-3 times per week, walking up hills,
running up stairs and enjoying the company of my new
grandson and other family members. If I had
stayed with the drug treatments of gone for BMT I
would either be dead or have a very poor quality of
life. I am angered by knowing that so many
others have blindly accepted the marvels of modern
medicine only to be left crippled, scarred and
dead. I realize that drugs can sometimes be a
good thing and that transplants are often a last
resort, but I wish that doctors in general would
rely less on drugs and more on insisting that we
adapt the necessary lifestyle changes. Off my soap
box and off to enjoy another day.
September 8, 2002 - Success
Continues
Editorial comment: I am reporting my
success as an inspiration to others. I am not
boasting or "rubbing it in". I
merely want those of you are losing hope to realize
that we can beat this illness and at least for now,
I am living proof
So.... Yesterday, I arose at 6:30,
showered and dressed and arrived at the golf course
at about 7:30 AM. My partner- brother-in-law
and I, shot at combined score of 72 to tie for
the lead in the top flight of our member-guest
tournament. We then played an additional 9 holes and
are still tied for the lead - I played 27 holes of
golf in 90 degree weather and had enough energy left
to go out to an anniversary celebration dinner,
watch some SU football and finally fall asleep about
midnight. Can you imagine? Last
year at this time, I could not even walk up six
steps without grabbing a wall to steady myself. This
morning I arose again at 6:00 and a ready to go at
it again.
September 19, 2002 - Counts
Stable but Not Going Up
Update on the golf - we came in 5th
- just out of the money but I played the full 54
holes. My next challenge is to take the PGA
qualifying test on October 10th and then who knows,
the title of the book could be "From AA to the PGA!"
My counts today were 27 Hematocrits and 14
Platelets. I feel somewhat tired and wish they
would start working there way up instead of just
sitting there. Oh well, patience is definitely
a virtue in this battle. I started working 8 hours a
week in the pro shop to see how I handle it.
So far, I am pretty tired after only a 4 hour shift! I am
also back on the desferol after a
brief respite. The ferratin level is down to
800 but they want to see 500 I guess.
October 4, 2002 - A Day in My
Life Now vs Last Year - The Proof is in the
"Putting"
Wow, what a difference a year
makes. Yesterday I arose at 5:30, did my 45
minutes of walking and exercise, took my sauna and
other treatments and was on the golf course about
8:00 (in the rain I might add), played about 14
holes bouncing around to avoid all the (other)
idiots playing in the rain. Stopped in at the
clubhouse to replace a dead monitor and then headed
home for lunch of navy bean soup and on to my
doctor's appt primarily just to have my CBC.
Platelets were holding steady at 13.3 and
hematocrits are steady at 26.6. Returned to
the golf course for another 18+ holes and figure I
must have done at leat 36 holes. Hit a bucket
of balls to lock in the good swing feeling and
headed home to get ready for Poker. Went by
the grocery store to pick up snacks and a supply of
grains, greens and beans. Played poker til
11:00 and fell asleep around 12:00. That's
about an 18 hour day and I was awake again this
morning at 8:00. The day before (Wednesday)
Sue and I went out to dinner and a movie with our
good friends. For your edification, here is
October 3 of last year when a trip to the grocery
store was a major event:
Felt pretty weak and tired today - Napped most of the afternoon
but beginning to feel a bit stronger again. Now over 30 days
since blood but did get platelets on Tuesday (counts were P=10, Hemo=8.3,
Hematocrits=24, WBC=2.4, RBC=2.4). Have been doing lots of
research and discoverd a similar disease (actually a Dr. Rea patient
has it) called ITP. Have also been dissecting Dr. Young
article and discovered in both places the mention of bacteria and
viruses as potential causes of AA. I had shingles and have
been testing positive to bacteria. Will talk to Dr. Rea about
it. Other patients are going through ALF and IV therapy which
I also need to ask about it. Settling into a routine of
grocery shopping at the organic food store ( i do drop by Tom Thumb
occasionally for a trip down memory
lane), preparing food from scratch
and doing dishes like in the old
days. I try to catch the 5:30
news but am having a hard time
adjusting to that part of the time
change. I then spend several hours
per day researching and keeping up
with the maintenance of the web
site. Still nobody else is getting
into the research.
It is sometimes incredible to me to realize that
I am beginning to return to my version of normal and
have the energy to do the things I
enjoy. The proof is indeed in the
"putting".
October 8, 2002 - I Got It I Got It I Got It I
Got It !!!
Bloodletting is the answer to my iron overload
problem:
You can't cure hemochromatosis by eating less
iron. It's impossible to avoid iron in the American
diet. Iron resides in every living plant and animal
cell, and virtually all commercials flours are
iron-enriched.
Switching to a multivitamin without iron will
help. Only marginally. Most multivitamins contain
small amounts of elemental iron. More important,
vitamin C enhances the body's ability to absorb
iron.
Bloodletting is an outmoded medieval practice.
Phlebotomy is the standard of care for
hemochromatosis. Once you make the diagnosis, your
patient needs to have his or her blood drawn
regularly to reduce and keep down her body's store
of iron. Steven Finch
Excerpt from ironoverload.org web page
But then what do I do about the lack of blood
cells - Oh, I know, have another transfusion!
Round and round and round we go, where it stops the
phlebotomist knows.
October 19, 2002 - Counts Remain Stable &
I am "Unusual"
|
1/9/00 |
10/18/02 |
| WBC |
3.5 |
1.6 |
| HGB |
7.3 |
9.7 |
| HCT |
19.8 |
27.7 |
| PLT |
7 |
15 |
Stable since May 23 for RBC and Aug 23 for
Platelets. Compared to original diagnosis
date. Not going up much, but not going down
either. Whatever is there is mine and all
mine.
In discussing my iron situation and whether or
not to continue desferol, Old Dr. Jeff says and I
quote: "You are presenting an unusual
case. We do not have a lot of experience with
patients like you. By now, they either don't
make it or they have been 'cured'". We'll
see if we can get the ferritin level down to about
500 and then you can stop the desferol."
Yippee skippee!! Oh, and btw, I played 36
holes of golf in the PAT on October 11 and still had
the energy to drive home and stay awake until normal
time. Then last Thursday, I did a full hour
walk including 1/2 hour outside with "the
hill" and five trips up and down stairs.
I vividly remember when a slow walk up 7 steps
almost did me in and a 5 minute walk was an
accomplishment. Made a trip to the natural
food store - $50 in a mini- basket - new record for
me. Also made a trip to the OPL and strolled
the 6xx aisle for about 1--15 books which will add to
my research.
October 26, 2002
I recently added and/or updated the
following pages that directly tie into the alternative/holistic
healing approach:
http://aplasticcentral.com/healing.htm
http://aplasticcentral.com/Sauna.htm
http://aplasticcentral.com/Alternative_Medicine/Nutrients.asp
http://aplasticcentral.com/Alternative_Medicine/Sources.asp
October 27, 2002 - Update on the Battle with
POMCO
(Cross Posted from the Insurance Battle Page)
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