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ID: 305
Member: Tran Henry
Last Updated:
Diagnosis:
Date of Diagnosis: 12/9-2002
Age When Diagnosed:
Current Age: 21
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
I have found Blood-tonic and Restore-Immune . My 21 years old son has have aplastic anemia and hepatitis B. He has been on Cyclosporin, Methoraxate and nlood transfusion for 8 months without remission. We searched for BMT without success ( no proper donor). We found Blood-tonic and Restore-immune in the net. It is botanical products from a company in San Jose ( Get Well International). My son took products since last October, his blood counts were normal in 2 months and remained good 5 days ago. We were totally surprised with the efficacy of blood-tonic and restore-immune. Had anyone from this group tried these products and what were your experiences?
Thanks for reading.
Henry, father of AA patient
ID: 307
Member: Melanie Rose
Last Updated:
Diagnosis:
Date of Diagnosis:
Age When Diagnosed:
Current Age: 18
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
My aunt was the one diagnosed with AA a year ago, doctors said that she acquired that due to her exposure to chemicals and pesticides. My aunt loved gardening, she uses fertilizers and all those complicated stuff. And all these foreign things have acquired in her body...that also inlcludes the canned good,noodles with so much salt, junk foods...artificial foods on short. Right after her diagnosis every one in our family changed our eating habits. I guess you can say that we have been conscious to live our life now healthily.
ID: 309
Member: Behnoush Babzani
Last Updated:
Diagnosis: Aplastic Anemia with BMT
Date of Diagnosis:
Age When Diagnosed:
Current Age: 21
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
i was diagnosed with aplastic anemia at the young age of 12. i was given treatment like atg and cyclosprine. my counts went back to normal and i was in remission for 7 years when iwas diagnosed again in august of 2003. my doctors insisted that this time around iwaste no time and immediately have a bone marrow transplant, if i were to receive the treatment i had the first time around, it could have potentially been fatal.yet, at the same time, if i have the transplant i was told it could be fatal as well. my brother was a perfect match. i was sent to standford hospital and given chemo therapy for a week, and on January 7th 2004 i had my transplant.i had a bad reaction to the bone marrow so the transplant continued through the 8th of january. i was in the hospital for 42 days. it was the most difficult yet soul strengthing experience i had ever had to deal with.i was still on treatment for about six months after transplant. it is 8 months post transplant and i feel great, my counts are returning to normal, or as normal as they can get. i still see the doctor very often and get biopsies very often. i am still not in the clear of graft versus host disease but i stay positive and pray this transplant has cured my aplastic anemia and i can return to a healthy and normal life. i have been able to return to school and most everyday activites. i am grateful... please contact me if you have any questions regarding my experience with AA or BMT!
www.Behnoush.org
ID: 310
Member: Bruce Lande
Last Updated:
Diagnosis: SAA Sep 03 Update
Date of Diagnosis: 1/1/2001
Age When Diagnosed:
Current Age: 52
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
This is the short version of my battle with AA - I am the author of and maintain the website http://aplasticcentral.com. For the full version, click on My Journey or the picture of me frolicking on the beach with my family at the Home page.
September 11, 2003 Update
I was diagnosed with AA in January of 2001. Conventional AA treatments were unsuccessful in defeating this ugly illness called Aplastic Anemia. I received two doses of Rabbit Serum (ALG) tried cyclosporine and all of its related side effect medications. In July of 2001, I gave up on the toxic drugs and went to the Environmental Health Center in Dallas, TX in an attempt to rebalance my immune system since AA is essentially an autoimmune disorder. (As a side issue, be aware that my insurance company is refusing to pay for this treatment even though it is working.)
I have essentially designed my own treatment program borrowing from Dr. Rea at EHCD, Dr. Sherry Rogers, my wife, Marla Brown and many others who have contributed their insights. I have used myself as a human guinea pig and am very pleased with the results. I have a quality of life that is better than before I became ill and I am convinced that had I stayed with the standard protocols or gone through a BMT I would either be dead or crippled.
My counts have stabilized (although still below normal) and I have been transfusion free since May 24, 2002. My physical and mental abilities are up to about 95% of my old self. Prior to my decision to abandon the conventional approach, I had endured two serious blood infections, had 5 Bone Marrow Biopsies, 5 different cental lines, self administered daily desferol and almost died on three separate occaisions. I think that as AA goes, I have just about seen and done it all. (To be correct, I have not had a BMT or Cytoxan - the downside risk scared me off).
I have written a book about my experience. There is a link to the previw on the home page.
Dr. Jeff Kirshner of HOCNY saved my life and I am now working to regain control over it. I was subjected to two rounds of Rabbit Serum, septocemia, more meds than I could count and then in August of 2001, I finally listened to my wife who is an RN and has taught herself about alternative healing methods. I am now following a regimen that is considered an alternative to modern medical treatments.
This alternative approach is working for me and many others. I recommend that you at least consider it before you subject your body to chemotherapy, ATG, Bone Marrow Transplants and other such invasive techniques. And the best part, is you can do it all for free. I am not selling anything except maybe my book (but most of the content is on the site if you want to save the the $15.) You don't need to buy any magic formula or purchase any expensive equipment. Just take charge of your life, follow the protocol I have described and discipline yourself to realize it will take 6-12 months before you see results.
I was initially very skeptical about the alternative approach as you will see if you read my full journal, but as of today, I am golfing 5-6 days per week, visiting with my grand child, walking, talking and taking out the trash. At this same time in 2001, I was virtually flat on my back in a hospital bed being subjected to all sorts of ugly experimental approaches to healing my body.
I now know that the healing started when my wife and I took control. I changed my lifestyle from type A to a much more relaxed approach, changed my diet from McD's to "grains,greens and beans", am detoxifying my body and eat only organically grown vegetables and drink only pure spring water.
It may sound boring, but this approach has saved my life and restored me to about 95% of my formal self in about a year.
My counts are still low (WBC=2.3, RBC=2.4, HGB=10+, HCT=27-29, Platelets 13-15), but I am completely transfusion independent. For more details and the blow by blow, read on and explore the site in it's entirety. BDL 9/11/03
My full story is accessible from the home page as My Journey
http://aplasticcentral.com/AA_Members/bruce.htm
ID: 311
Member: Sandy
Last Updated: 6/15/2001 5:35:54 PM
Diagnosis: Aplastic Anemia
Date of Diagnosis:
Age When Diagnosed:
Current Age: 56
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
I have 2 blood disorders. the first one caused the SAA so I am not sure I am
the best person to base things on. I have LGL, leukemia - Large granular
lymphocyte and the leukemia is not the fatal type. The LGL is very rare
which makes it soo diff to know what will work. I do know another person
with the same thing I have and the cytoxan worked for her !!! I met her on
the lsitserv- Ali and her hubby Kevin Holder I think. she is a bit younger
than me.
I could not tolerate the cytoxan. It upset my stomach so very much !!!!! I
have been thru the cyclosporine, then cytoxan, then ATG, then methotrexate
and now no treatment. Letting my body chill for a while. I also now have
iron overload and am on the desferal yet get it thru my port. Many others
use the soft something needles in their stomachs for 3 days at a time. I am
6 nites on and one off !!! My life has really changed with these 2 blood
d/o's. I am already a breast cancer surv of 6 yrs. the chemo I had in 1995
prob kicked the LGL into action when all my blood levels dropped big time. I
am always low wbc, platelets and crit.
Not sure I helped you. do wish you much luck !!!
ID: 312
Member: EVAN SLEEMAN
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: FEB. 2ND,1989
Age When Diagnosed:
Current Age: 73
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
IT MAY BE TOO LONG, LET ME KNOW YOUR LIMITS.
ID: 313
Member: erica smits
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: january 2000
Age When Diagnosed:
Current Age: 21
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
I got diagnosed with severe aplastic anemia in january 2000. It was the first time I eveer heard of this disease. It was the first I was really ill and in a hospital for it. So loads of new experiences for me. I was treated with ATG, G-CSF, cyclosporine and lots of all kinds of medications. The ATG seemed to be working and in september I was going to college again, taking things slow. Things went better, my cyclosporine less and my trust more. Until the beginnings of june. My bloodcell-counts had dropped and the cyclosporine went back to 275 mg a day. A big disappointment. I just got used with being a student instead of a patient again and now I was back where I started. Now, half july, my counts have stopped dropping, the bonemarrow shows nothing funny, other than heving aplastic anemia. Today, it was thirteen days ago I had my last tranfusion with platelets and my hematologist (dr. Barge from Leiden Medical Centre) is optimistic. I am in good spirit and I believe I will get better.
ID: 314
Member: Joe Jacobi
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: 10/99
Age When Diagnosed:
Current Age: 49
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
I was diagnosed with aplastic anemia 10/99 after several weeks of feeling extremely tired, throbbing all over, and becoming pale and then almost yellow. I was advised by my hemotologist of the work done at NIH on aplastic anemia. I met with Dr. Neil Young at NIH. He advised me that I should consider being treated in one of their trials before considering any bone marrow transplant.
My aa was severe and I was receiving transfusions for red blood and platelets. My family and I decided I would enter NIH and get randomized to either ATG/cyclosporin or Cytoxin/cyclosporin. I was admitted mid Nov. 99, and received ATG/cyclosporin. I spent about 10 extra days there due to a skin reaction and fever. They still don't know what caused the skin rash. I returned home to New Jersey in Dec. 99 and wound up in the hospital with a very serious case of pneumonia. They said it wasn't pneumocystis, but they treated me as if it was.
The good news is that after leaving the hospital in January 2000, things got slowly better. I had a problem with tolerating the cyclosporin. It was beginning to affect my kidneys. But NIH lowered the dosage and that problem was solved. By March of 2000, my platelets stabilized and I did not require any more platelet transfusions. By June of 2000, I did not need any more red blood cell transfusions. On my visit to NIH in May of 2000, they also put me on MMF.
Today, my bone marrow is working, twice as hard as normal. But I am only at around 10.5 to 11 hemoglobin, and about 55,000 platelets, due to having PNH cloning. I am tapering off of the cyclosporin and then the MMF. In November I will be back at NIH for my 2 year checkup.
I don't know what the future holds, but I thank the Lord that at least for now I am feeling better and appear to be in remission. I wish well to everyone who is struggling with aplastic anemia and look forward to hearing from anyone.
Feb.2002-2yr. checkup at NIH went well in Nov. Still on MMF. I had highs of 11.4 hemoglobin and 90,000 platelets at Dec. checkup w/hemotologist. But counts have dropped a little since then. I am now at 10.4 and 80,000. Hemotologists says don't worry, but I still do. I am hoping March counts do not drop, then I won't worry.
Oct.2002-my counts continued to drop each month. I decided I should find out what I should do, since nobody at NIH called to find out what was going on and my hemotologist didn't have a clue. So much that has to be done has to be done by ourselves. NIH suggested that I go off of the MMF. It wasn't helping me keep my counts up after going off of the cyclosporin. It seems to me that once the cyclosporin was completely out of my system my counts began to drop. I was put back on 75mg 2x a day. This seems to have stabilized my counts, but they are well below what they were in November. I hover around 9hg,35-40,000 platelets, and 3.2-3.8 wbc. I will be going to NIH November 19 for my 3 year checkup and will have many questions. However, my wife says we aren't going unless they capture that sniper. For those of you who don't know, NIH is located in Bethesda, MD, which is around the area where the sniper has been striking. Just something else to worry about! By the way, I thought that I may have had a problem with possible cancerous nodules in my lungs. Fortunately, these appear to be something else, since they have not grown in three months. This is a relief because the next step would have been surgery to inspect some of them.
ID: 315
Member: Mindy Pember
Last Updated:
Diagnosis: SAA RESOLVED with Cytoxan without BMT
Date of Diagnosis: 11/10/99
Age When Diagnosed:
Current Age: 43
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
I was diagnosed with severe Aplastic Anemia in 11/99. I had gone to the emergency room after fainting. I had an extremely heavy period, a terrible headache, a bleeding sinus infection, a gash from falling onto my glasses, painful mouth sores, bruises from where my cat jumped on my lap, red spots all over, and no energy. My doctor had diagnosed it as the flu.
At the hospital, I laid there shivering for what seemed like a long time while they treated everybody else around me. They decided not to call anyone to let them know that I was there (it was 3:00 am, and my family was all out of state) until morning, since I didn't look that sick to them (!). But when they started to insert a catheter into my arm, it more pain than I had room to take in. I felt an incredible pressure in my chest with no room left to breathe as I lost consciousness. That definitely got their attention! I was put on oxygen and monitors, and after the blood counts were in, transfusions of blood and platelets, and sent to the Cardiac Care Unit. Initial Counts: Hgb: 4.7 WBC: 900 GNC: 23 (not 2300) Plt: 8.4 My local hospital did a Bone Marrow Biopsy to determine if it was Aplastic Anemia. Within minutes of receiving the results, arrangements were made to transfer me to Johns Hopkins Hospital, 100 miles away.
When I was wheeled into my room at JHH, I was immediately struck by the positive atmosphere of the Bone Marrow Unit there. Every staff member who entered my room had a level of professionalism, precision and confidence that was amazing. I personally never had to deal with my insurer; the hospital had an insurance wizard whose job was to get everything covered. I never even heard my HMO whimper. Before I had my slippers off, they were contacting my siblings to have them go that evening to their local hospitals for bone marrow matching. One of my sisters was a perfect match. My oncologists explained Aplastic Anemia, and my treatment options. They presented three treatment options to me. A bone marrow transplant was one option, but even with a related donor match, at age 41, my odds of survival were quoted at around 60%. Immunosuppressent treatment (ATG) was another option. This was described as having the probability of an initial remission, but a high probability of relapse after an average of 10 years. A third option that they presented was High Dose Cytoxan (the same chemotherapy that they use before a bone marrow transplant), without the Bone Marrow Transplant.
High-Dose Cytoxan without a bone marrow transplant is an experimental treatment that is being tried at Johns Hopkins. I considered the options. I did not want to spend a lifetime tackling the graft-vs.-host problems associated with a Bone Marrow Transplant if I didn't have to. I also did not want to have the possiblity of a relapse 10 years down the line. The high dose Cytoxan without the bone marrow transplant(autogenic, let my own grow back)did not appear to cause either of these. The disadvantages of the Cytoxan were the long, slow, vulnerable recovery period with low white counts, and the small but real chance of a fatal reaction to the chemotherapy. I chose the cytoxan.
Tests began. Another bone marrow biopsy was done, along with other tests to verify that it was not another form of anemia or MDS. Tests were also done to determine if my sinus infection was caused by a fungal condition, and to determine if I had any other infections. Lung and heart function were also measured. They inserted a Hickman catheter for the administration of the chemo and later transfusions. This was done with "twilighting" sedation. I don't remember anything of the procedure. There was a bit of pain at the site for a few days, but then the Hickman was problem free for the next 9 months that it graced my wardrobe.
The cytoxan was administered only after they ruled out all infections and had eliminated my sinus condition. I had it for four mornings, along with another medication to protect my bladder from damage. On the 2nd day, food smelled ugly, and by the third day the idea of food was hideous, but this was expected. A few weeks of actually wearing size 4 jeans for the first (and only!) time of my life, but a new infatuation with the gentlemen Ben & Jerry helped me to get back into my regular clothes before very long.
My hair left via my hair brush on about the 10th day, but this wasn't so terrible. I thought that it was a small price to pay for a chance of a normal life. I was able to get a wig through an Image Recovery Center. I wanted to look as much like my old self as possible for my son. My appetite came back the minute I landed in the apartment, 10 days after the Cytoxan. I came back to the hospital daily for blood counts, transfusions, anti-fungal and antibiotics, and growth factor (Neupogen).
While my white count was low, I wore the surgical mask whenever I left the apartment, and later on, my home. I avoided touching anything that I could avoid outside the house, stayed away from people, stayed out of restaurants, public restrooms, and any situation that put me close to crowds. I home-taught my teen-aged son for a little while to avoid school colds.
The Cytoxan's job, as I understand it, is to kill off the white blood cells, as they are malfunctioning, and let new ones grow from the stem cells, which Cytoxan does not damage. Kind of a chemical "rebooting" of the blood. My first post-Cytoxan white cells appeared 10 days after treatment. I had 6. I ordered them all little party hats, and got to know them personally. :-) A month after treatment, I had 160 of those little rascals and 11 neutrophils. At one month, 10 days, I had 600 white cells and 420 neutraphils, and they let me go back home, reporting to my local hematologist twice weekly, and still on antibiotics and other bug killers.
I took care of my pal, Hickman, with daily Heparin flushes, and twice weekly dressing changes. Dressings were changed with gloves, mask, and betadine swabs. When it was time for us to part company, he was simply tugged out during outpatient surgery.
I gave myself neupogen shots (not so bad, even for my squeamish self). In another month, when my WBC was 3000 and my GNC was 1000, they discontinued the Neupogen. My white counts immediately declined to the 1500 range, but this was expected. They then resumed their slow but steady upward climb.
My last platelet transfusion was 2 months after the Cytoxan. Their initial growth was slow but they have sustained steady growth pattern.
My last red cell transfusion was 10 months after treatment. I was never prescribed Procrit.
FEBRUARY 10, 2003: In the words of my hemo: "APLASTIC ANEMIA IS "RESOLVED"!!
Hgb: 13.5 WBC: 3500 Plt: 133 GNC: 2300 My counts have risen slowly but steadily since treatment. I have had no long term physical effects except menopause (age 42). I have my life back! And it is GOOD. I appreciate it so much more now, and am living it more carefully.
AUGUST 8, 2003 UPDATE: Some counts still rising. Hgb: 13.3 WBC: 3800 Plt: 165k GNC: 2100 Hct: 38.6
ID: 316
Member: Marissa's MOM
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: May,2000
Age When Diagnosed:
Current Age: 10
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
Just dont know.
ID: 317
Member: Rachel Batson
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: April 1994
Age When Diagnosed:
Current Age: 32
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
After learning I had this "problem" I underwent a treatment that has to get individual approval by the FDA. It was basically serum derived from the blood and bone of horses. I was given massice amounts of them serum through constant IV's for eight days. After the treatment my blood counts improved. A year later I became pregnant and the anemia returned in full force. As a result of the prednisone given with the treatment I have AVascular Narcrosis. I have already had my left hip replaced and am in constant pain with my right hip which needs to be replaced also. If anyone is considering this experimental treatment please discuss all the sideeffects of the drugs with your doctor in great detail. I was not informed of any side effects until it was too late.
ID: 318
Member: Kathy Miller
Last Updated:
Diagnosis: Aplastic Anemia passed away May 30, 2002
Date of Diagnosis: July 2000
Age When Diagnosed:
Current Age: 48
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
History of hypogammaglobulinemia since my 20's. Had problems with bleeding when I had
surgery to remove adnoids/tonsils when I was 10 years old. Lots of problems with ear
infections, respiratory infections and digestive track problems which can be
associated with low IgA and IgG in retrospect. HPV when I was 35 and CA cervix. No
chemo or radiation done, just radical hysterectomy. Enlarged thymus - removed 1991.
First petechia noted in 1993 - suspect drug Zoloft. Second petechia summer of 1999 -
suspect drug Lamisil. Third petechia - March 2000 and hospitalized when blood counts
were found to be all below normal - suspect trigger again of medications - Neupogen and
Macrobid. Diagnosis of mild AA in July 2000 - one course of Neoral (cyclosporine) and
counts rose to almost bottom of normal ranges. Taper completed April 2001 and remission
for 2 months - blood draw on July 9, 2001 showed all counts falling again and resumed
200Mg Neoral with Magnesium. Having evaluation at NIH on August 7, 2001. This is now Kathy's daughter Tanya writing. Unfortunately my mother passed away on May 30th, 2002 as a result of multiple organ failures following a bone marrow transplant. Her doctors suspected that the complications began to arise as a result of the chemotherapy treatment administered. I cannot elaborate much on this at this time except to say that she failed to exhibit any increase in white blood cell count after the procedure.I am not very familiar with the terminology associated with the disease, however if anyone who reads this wishes to recieve any further information or details I will consult with the records that were provided for us and with my father who knows more about the technicalities than I. My father and I miss her very much and hope that in the future no one will have to suffer the pain that such diseases cause patients and their families. My address is Tanya_N_Miller@msn.com
ID: 319
Member: claire
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: 5/29/2000
Age When Diagnosed:
Current Age: 45
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
I can not tell you what it means to me to have found your web sight! I am 45yrs, and have been diagnosed with AA, now for one year. I am being treated at John Hopkins Bay view, Med Center, and I am the only one there at this time with AA. It is comforting to know there are people who understand out there. Again thank you for the information your provided and just for listening. Crt was 21 today.. transfusion in the morning! AAHH! Sincerely; Claire in Maryland
ID: 321
Member: Tamra Powers
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: 7-14-2000
Age When Diagnosed:
Current Age: 20
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
I am 20 yrs old now, but I was diagnosed with severe AA last July. For several months I had been extremely tired, (I couldn't even go up the stairs to our apartment without running out of breath and feeling my heart beat through my head!!) I kept wondering what was wrong with me but quite honestly I just thought I was really, really out of shape! I can laugh at that now, but I really believe what I was doing was just trying any excuse possible and denying that something was really wrong with me. I kept complaining to my husband but I don't believe he really understood how bad I felt. Anyway, towards the end of 6/2000 I started feeling extremly tired and a lot of bruises started showing up. On 7/9/2000 I got really sick and started throwing up, which continued throughout the rest of the week. At this time my husband made me go to the doctor to see what was wrong. I truthfully believed I was pregnant! On 7/14 I had a CBC done, along with several other tests, the nurse was immediately alerted at my resting heartbeat of 137 beats per minute, my heart literally felt as though it was going to leap out of my chest! After my doctor appointment I went straight home. My doctor personlly called me not even an hour later and told me that due to my test results I needed to come down and be admitted into the hospital immediately. I was admitted into the cancer ward with a Hemoglobin of 2.9, a white cell count of .7 and a platelet count of 6000. I had nurses come in my room just to see me because I was the only one they'd ever seen with such a low blood count that was still walking! Initially they thought I might have leukemia but after researching a bit the thought of aplastic anemia came up. My doctor referred me to a hematologist at Barnes-Jewish Hospital in St. Louis, MO. After recieving 5 blood transfusions along w/several platelets, I went up to St. Louis there they believed indeed that I did have Aplastic Anemia. I am an only child so a perfect match from a sibling was not an option. I went ahead and started the ATG/Prednizone/Cyclosporin treatments and seemed to respond well. After I came home from those treatments, though I had to stay a few exra days due to reactions, I felt a lot better than I had just 2 weeks earlier. I maintained my blood transfusions and platelet pheresis along with neupogen, and procrit shots almost every day. Due to a miracle from God, I have not needed a transfusion since mid September of 2000. I still am on high doses of Cyclosporin which seem to be doing a pretty good job on their own. My doctor has recently started to very slowly start reducing my doses, however, I have just experienced a substantial drop in my counts which might change his mind on wether to maintain the reduction of medication. He has mentioned harvesting my bone marrow cells and freezing them, in the event I go into a sudden relapse and need a transplant. This is something that I am still in the process of finding more information on. Currently by the grace of God, I am maintaining on most days, count of Platelets-156,000..Hemoglobin 12.0...and white cell of 4.4. Up until now it has been a roller coster of emotions, now I am finding out there are several out there with this disease and am not as alone as I thought I was. It scares me, because my husband and I are wanting to start having children within the next few years, and I just don't know how this disease will affect that. Thank you for listening I have needed to get all of this out and talk to people who really do understand this disease. I look forward to hearing from you. Love, Tamra Powers
ID: 322
Member: John Vancs
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: mar 2000
Age When Diagnosed:
Current Age: 7
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
ID: 323
Member: Marion Strachman
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: August, 2000
Age When Diagnosed:
Current Age: 49
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
I began to feel tired and started noticing black and blues on my legs and arms. I went for a blood test and was admitted to the hospital the next day. After a few short stays at a nearby hospital, I switched doctors and was diagnosed with Aplastic Anemia. Of course, my life was never going to be the same. I have two children, a girl 14 and a son 18. I was given horse serum and about 5 months later, my counts started to go up. All this time I was put on cyclosporin and I am still on a low dose. Up till then I had many, many transfusions of both red blood and platelets.
When the levels sort of peaked, I began to experience a great deal of arthritis pain and was put on Prednesone for about a month. As a doting mom and also working out of the home, it was extremely difficult to spend so much time away from home. Being relatively healthy most of my life, this was a great shock, physically as well as mentally and still is.
At this time my levels are up to a degree called remission, but I never go a day or a few hours without wondering what they will be when I have my next blood test. I still have aches and pains and still feel tired with not much effort. I have heard many theories about the cause of AA, so, I have decided to put together a list of things that I could think of in the year before I was diagnosed that I suspect could have caused it. Possibly others will do the same and maybe we can come to possibly something in common.
Here goes, painted wooden shelves in closed space, spray painted furniture with 3M waterproof, got a flu shot, had pesticides put on my lawn, Had to MRI's, used cell phone a lot, used electric blanket for the past 10 years. So those are all things done within a year of diagnosis. I feel that it might even be like a Moletov Coctail. In other words, a number of things in conjunction. May God bless all of you. Hopefully there will be a link to something and there will not be any new patients.
ID: 324
Member: John Usselmann
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: October 20, 2000
Age When Diagnosed:
Current Age: 32
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Update: January 18, 2003
In October,2001, I had liver failure followed by SAA. Stem Cell BMT with my younger sister as the donor on Nov 20th, 2001.
It's been nearly 3 years since I had my BMT. The first six months following the BMT were rough. Since then I've maintained a sort of walking wounded status. I suffer from graft versus host which is kept in control with cyclosporin, presidone and cellcept. I've returned to working full time and can do everything a normal person my age, 35, can do.
My condition has gone from changing daily to changing slightly from month to month. Right now I'm looking forward to the day when I can get off all these damn pills.
ID: 325
Member: Arthur Kunofsky
Last Updated:
Diagnosis: AA BMT Success Counts on the Rise 4/02
Date of Diagnosis: 11/99
Age When Diagnosed:
Current Age: 64
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
I appreciated reading your story as my husband is almost in the exact same position except that he is older--64. He was diagnosed with AA in November 99 and went through his first round of ATG--rabbit--because he was allergic to horse. The first round was successful and his counts went up substantially and he was transfusion free for about a year.
Then in March he was diagnosed with prostate cancer and under went radiation and seeds. His counts had started to go down and he needed platelets for this procedure. Finally, in May the doctors at Mt. Sinai repeated the ATG and cyclosporine. He is basically on the same drugs that you are and his doctors are talking transplant but fortunately his sister is a match and it looks as if they are leaning toward this. They are also considering a mini transplant.
It is now December 2001 and we arenow on the road to a stem cell transplant but it has been a long Haul. Arthur's sister is a match but has had both breast and lung cancer but the doctors still feel that she would be his best chance. He had a severe reaction to ATG the last time, now we're planning to use campath and cytoxin. The doctors have postponed stem cell transplant which was scheduled for Jan 11, because I have not recieved any transfusions since mid november. If you have any info on these drugs I would appreciate hearing about it. Good luck Bruce!!!
I have been following your
progress with AA for a long time. I got sick just about the same time as
you did. Our stories are almost duplicate. I was very fortunate to have a
bone marrow match from my sister. There were many concerns about using her
as a donor as she had two recent episodes of cancer. I finally decided that
with my counts not recovering that I had no choice and the doctors agreed.
I was just released from the hospital this past Tuesday after six
weeks as the "bubble boy" in a room that was a total nightmare. I was very
fortunate that the nurses and staff were more than competent and caring.
I had two treatments of ATG previously. The first one resulted
in a short remission which enabled me to attend my son's wedding and see
what life could be like for a short time. After the second round of ATG I
had a severe allergic reaction. I still have nightmares from that reaction.
My tongue swelled and my throat closed and I could not breathe.
It has not been easy for the past two years. I have been basically
confined to my apartment.
Now for the good news!!! My treatment began on March 4th at Mt. Sinai
Hospital in NYC. I endured total lymphoid irradiation, chemotherapy with
cytoxin and believe it or not another round of ATG followed by the bone
marrow transplant.
It is now almost one month to the day of the transplant and on my
first visit to the doctor's office today my numbers seem to be rising. My hemoglobin is 10.2, my platelets are at 25,000 and my white count is 7.6. Hemocrit is 31,000.
ID: 326
Member: Connie
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: 11-'01
Age When Diagnosed:
Current Age: 46
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Hello. I have severe Aplastic Anemia. I had ATG (horse serum) and went into remission only for about 1 month. I have had treatment again(rabbit serum), but we do not yet know if I am in remission. They say if this does not work, the next step is bone-marrow transplant. This sounds very freightening to me. Maybe I have read too much on it. Anyway, I currently write to a few people with AA and am interested in writing to more. Thank you.
1-5-2002 Update
Since ALG treatment, I have now been with stable cbc's for about 4 months now. We are very pleased about this. Platelets are still low, but managable.
ID: 327
Member: Vivianne Wright
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: 0498
Age When Diagnosed:
Current Age: 39
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
Hi Everyone!
I was diagnosed in April 98 with severe Aplastic Anemia with a hemoglobin of 3 and 14,000 platelets. I was 36 at the time of my diagnosis. No bone marrow match with my sisters, so they decided on 5 days of ATG, 6 months of liquid cyclosoporine along with 2 1/2 months of Epogen. I did lots of sleeping and relaxing with my 3 months off of work. Funny, just 2 months before I said I had enough sickleave to be off for 3 months. Wow, be careful what you wish for! Before my diagnosis I had a hard time breathing, walking, concentrating, bruises and petechiae. I had a hard time staying awake at work and would go home for 2 hours to sleep! I can now say that I have normal cbc's. My platelets are 185,000 and hemoglobin 14.8! :0) I really believe a positive attitude and support from AA pals and family make a difference! Now I go in for checkups every 6 months. When I ws first diagnosed I went in for 3 times a week for my cbc's. I was also given 2 platelet transfusions and 6 pints of blood during my recovery.Wishing all of you the best of health!
5/16/03~ Cbc's
hemoglobin 14.6
platelets 221,000
Feeling well these days! I still like my naps though! I go every 6 months for my cbc's and check-ups.
ID: 328
Member: James R. Slack
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: February 19,2000
Age When Diagnosed:
Current Age: 58
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Today I had the opportunity to read all of our mutual stories, each of which express optimism, faith, and a sincere sense of sharing. With that opening, I wish to share my story. Forgive me if my story sounds similar to yours; but perhaps my experiences may help. dx SAA 02/00 age 57 but going on 45.
I had just returned from a snow mobiling sojourn in northern Wisc. and was in the process of shoveling 20+ inches of snow from our Illinois residence over the Presidents' Day weekend 02/00. Felt tired and fatigued; opted for a few glasses of wine and relax; slept 16 hours that evening; and was fascinated that my stool was black the following morning.
I thought it was the oreo cookies. My mentor, teacher, nurse or otherwise my wife convinced me to seek medical attention . dx initially as acute leukemia; revised to SAA with results of BMB. What's Aplastic Anemia? I saw a thumbs up gesture from the emergency room staff at learning the dx was not acute leukemia but AA. Must be okay-take a pill and go home-I wish.
I started the protocol of ATG/Cyclosporine/prednisone. Apparently the initial infusion of ATG was to rapid for my system:chills, tremors, fever, suspected heart attack. I was one large hive. After recouping for 4 days, started the regime over a longer period of time with minimal side effects. Spent three weeks in the hospital mainly due to the intial reaction of ATG and watching for serum sickness. Counts began to rise and hold as of 5/00: wbc 3.0, anc 1.5, hgb 9.0, plates 30,000. Only 2 infusions since leaving hospital. Cyclosporine was reduced from 4 to 3 and zip in August. I was off all meds; feeling great, even though counts below normal. BMB showed regeneration-was I in for a future suprise!!!
9/00 went in for my monthly CBC's draw. Doctor thought it was a lab error, but all my counts were stable with the exception of platelets. They had fallen to 9,000. Those nasty guys are my nemesis.
A BMB retest confirmed relapse; and I started back on cyclosporine and all the other meds that go with it.
Six months passed with minimal results. Wbc 1.5, anc .8, hgb (infused every 2 weeks),
plates (infused every 7-10 days). BUMBER!
Underwent a second ATG treatment 4/01. To date, my counts are gradually increasing to where I,m transfused aprox. every 4 weeks with paxol(rbc/hgb), and every two weeks with platelets. Started on procrit(epogen) 8/11/01. Cyclo levels have varied due to changes in body levels and renal function. Currently at 3 twice per day. Wbc and anc holding at 2.5 and 1.5 respectively. Recently underwent hip surgery (core decompression) due to femoral heads on both hips being destroyed with prolonged prednisone use. It reminds me of the famous line from the film "Animal House"- "Thank you sir, may I have another". I look forward to being off cruthes within 2 weeks providing the surgery went well. Then we do the left hip!
P.S. I may sound upbeat about life and the path that God has laid before me. But I do have those periods of depression. There is not a day/hour that goes by without thinking about my condition and thinking about the what ifs. Thank you for allowing me to share my story and perhaps my successes and achievements. God bless.
update2/2202:
January 22,2002 had my initial appt. with Dr. Neal Young at N.I.H. After 14 simultaneous blood draws and 6 vials of bone marrow I should be receiving a "comphrehensive report as to my condition and a confirm of a second opinion and future treatment protocol. Per discussions with Dr. Young, we will be abondoning procrit and trying a regimen of other drugs such as numega (for platelets), which I have been on for the past month (DAILY INJECTIONS), and perhaps GSF's and hormone stimulants to attempt to stimulate blood production. Currently my WBC is holding at 2.5-3.5, with an ANC of 1.5-2.5; HGB 9.0, but requires 2units of packed cells approx every 2-4 weeks; and my nemisis-platelets requires transfusion every 2-5 weeks (veries from month to month). I have noticed that I will hover in the low teens for weeks on platelets. We are in the process of weening me off of cyclo.-down to 2 ml twice a day. YESTERDAY, I CELEBRATED MY SECOND ANNIVERSARY WITH AA. Starting Monday 2/25 I will be starting a daily infusion of desferal due to iron overload. Oh fun. And the previous hip surgery was a failure requiring hip(s) replacements. We are trying to get the platelets producing on my own before surgery, if possible. MY goal is get rid of the crutches. If future treatments do not show improvement, a 3rd. ATG (with rabbit rather than the 2 previous with horse) will be tried.
I'm still upbeat,and pray for all our continued sucesses.
My new e-mail address is JJRSLACKER@AOL.COM
ID: 329
Member: Jenna White
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: June 12, 2000
Age When Diagnosed:
Current Age: 10
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
July '05 Update -3 Years No Meds in Full Remission - Hi there, my name is Jenna and I was dx'd with SAA on June 12th last year. It all went real fast. At first they thought I had ITP a platelet disorder. Then they decided it was AA. Well I went into Primary Children's Hospital on the 5th of July. I had only had 7 bags of platelets by this time. On the 6th was the day of my surgery for my central line. The 7th we started my ATG. I had only a tiny bit of hives and went home on the 12th.I had two bags of platelets in the hospital. After I got home I had only a bag of platelets a week and since August 12th of 2000 I have not needed any more. I am still on those "SKUNK" pills. Boy do they stink! Magneseium and some sulfa thing to keep me from getting inside ifections. I am getting off of my pills. I started with 12 of those smelly things and I hope at tomorrows labs I get to get off of another one. I only have to go have my labs once every other week now instaed of every week and I only have to go to Primary Childrens every other month. WEEHAW! We do not know if this is going to work forsure. I might still need a transplant. If that is what I need to do then I guess I will because I just want to be fixed. I have Juvenile Diabetes also. I have had it since I was 1years old. They say I have a bad immune system because it is an immune system disease also. I just want to get past this! So I just keep taking my pills. If there are kids out there my age who want to talk, email me and I will write you back. I think it would be good to have someone who knew what I was going through. Thanks, Jenna
7-22-02 I have not been here for sometime and thought I should update the group.Well, it is now two years since treatment. Jenna has her two year check up on the 26th. Recent counts reveal that she is holding her own. Platelets average between 120,000 and 140,000. Those counts have also only climbed dramatically since having been off of the cyclosporin in the end of May. All other counts are wbc's averaging between 3100 and 5600 with almost always between the 40% and 50% abs neutrifil count. All other counts are in the low normal range. She attended school last year and though she missed about one whole grading period for a combination of reason including some headaches she started having, she managed to hold an A- average. Yes a doctor she plans on being! A hemotologist! Her plan is to tell those kids that she understands exactly what they are going through and that they can make it!
Laurie- mom to Jenna
November 13,2002
Jenna is still doing well. All counts are with in normal ranges with those platelets averaging 130,000. She has been off of her meds since May. She has been enjoying being a healthy kid once again! Another birthday has come and gone and life seems so very different from two short/long years ago. I hope and pray this continues! I hope those of you who read this are given some hope and are encouraged! Laurie Jenna's mom
April 30, 2003- It seems my visit's are far and few between these days. I am pleased to say that with in a month Jenna will have made it through a whole year without any meds! A major accomplishment! She is down to hemoc visits 3 times a year and labs about once every two months. Her counts, every one of them are normal and platelets now averaging 170,000. She is living life to the fullest! For the last four months she has either had a rehersal or a show four nights a week as she was in the production Joseph and the Amazing Technicolor Dreamcoat. She loved doing it! Between Piano lessons and theatrical class and Joseph and his Dreamcoat I would say we are now living life as normal as life can be.Once again, my updates are if anything to share our experiences and to hopefully give hope to those of you who are battling one of these diseases. There is hope! Do not give up! Laurie mom to Jenna.
9/23-04
Hello again...Just a quick note...Jenna still doing very well. It was two years the end of May that she has been with out any meds. Counts are all within the normal ranges. Only goes to Primary once a year now and labs are done only twice a year. I thatnk God every day that treatment worked for her. She just turned thirteen on the 16th. She still plays the piano and has thus broaden herself by having played base ball this past summer and has taken on the sport of fencing. She is really enjoying it! Who knows, one day a future Oylpian maybe. Good luck to all of you!
--Laurie--Jenna's mom--
ID: 335
Member: Sebastian Roman
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: July 27, 1997
Age When Diagnosed:
Current Age: 13
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
I will be sending separately to you the story of my son Sebastian. Could you please send to the e-mail adress above written your respective adress.
Guillermo Roman
Santiago, Chile
ID: 336
Member: Stephen Glass
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: June 2000
Age When Diagnosed:
Current Age: 2
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
My son Stephen was diagnosed in June of 2000 with AA. He was born in 3/99. Prior to the diagnosis he developed abcesses on his thighs from his immunizations. These abcesses were drained after one was infected. (kinda odd that he had abcesses after all three injections) In Jan 00 he had some very bad bruising and was on Motrin and Bactrim at the time. The meds were stopped and his [platelets began to rise. Then in April his platelets dropped again and it was thought he had ITP. The rest of his counts crashed in May and he was then diagnosed with AA. He was treated at Children's in Pittsburgh with the ATG therapy and has had a slow response. He has been tx free since 4/01 His WBC and Hgb are at the low end of normal and his plts are around 20. His counts actually seemed to get better once the Cyclo was stopped. Right now he is on NuMega and GM-CSF. Stephen is our only child and is not a BMT canidate at this time
ID: 337
Member: Andrew McBride
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: 7/98
Age When Diagnosed:
Current Age: 7
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
Andrew's legs were very bruised when we returned from vacation (he was 4) which prompted a doctor visit. He was initially diagnosed with ITP. The day after that diagnosis Andrew got very ill and we were told to take him to the hospital. His diagnosis then changed to probable Leukemia which after BMB was changed back to ITP. Several days later and many tests later his diagnosis was ruled Severe Aplastic Anemia. His brand new baby sister (2 mos. at the time) was a perfect match for his bone marrow but was too young to undergo the procedure. So Andrew received the ATG, Cyclosporine, Prednisone, GCSF regimin. He went through the ATG great - no side effects at all. However, he had an abscess on his abdomen and a small hole in his bowel which kept him in and out of the hospital for about 2 mos. He has been off Cyclosporine for almost 2 years now and is in full remission. We thank God for every day that we have.
ID: 339
Member: Terriel E. Wessinger, Jr.
Last Updated:
Diagnosis: Passed away August 1, 2003
Date of Diagnosis: June 3, 2001
Age When Diagnosed:
Current Age: 70
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Daddy passed away on August 1, 2003, just two short years after his diagnosis of aplastic anemia. He was a strong man and the best father in the world. He is survived by his wife, five children, and eleven grandchildren. We will miss him terribly. We love you, Daddy.
ID: 341
Member: Ilir Kullolli
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: 11/17/1999
Age When Diagnosed:
Current Age: 23
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
http://www.geocities.com/ilir_status
ID: 342
Member: Crystal Downen
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis:
Age When Diagnosed:
Current Age: 20
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
I don't have AA but my aunt lost here battle with it on Monday November 5, 2001 and I am trying to do my best to research and help others so they don't have to go through what she went through.
ID: 343
Member: Nita
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: October 2001
Age When Diagnosed:
Current Age: 42
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Welll my name is Mona and I'm writing for a very dear friend of mine as she was in the hospital for 9 of the longest weeks I've ever known. She passed on November 5, 2001 of what the doctors called complications of the Aplastic Anemia. Which took them 6 weeks to even tell us that she had it. When she went into the hospital her counts were so low that they said wow how is she walking and talking. But nita well she said that she felt fine. Just two weeks prior we climed hills and walked about a mile and burnt hamburgers together and took pictures she was as healthy as they come short of some really bad bruising that her body had gotten. She had promised that she would go to the doctor as soon as her insurance kicked in and that was two weeks from that day well she didn't make it that long and she got sick. I am not sure about this blood disorder and even less informed than I should be I guess. But what scares me most is that she went to one Arkansas best hospitals and they couldn't even tell us what was wrong. I'm going to end this story here and sorry it was so long but I just have so many questions and wondering what could have been done different. Guess that's ever family that has these questions when someone passes so quickly. 9 weeks just wasn't long enough...
Mona :)
ID: 345
Member: Ali Holder
Last Updated:
Diagnosis: AA/MDS 10/99 LGL 4/01 LD Cytoxan Responder
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
I came across your site link on the AA/MDS ListServe and through regular emails with Marla Brown. I was not familiar with the method that you have chosen as an alternative approach, so enjoyed learning something new. First, let me say that I do not have AA or MDS. I have another wonderful little number classified as Large Granular Lymphocytic Leukemia, fondly referred to as "LGL." I am a physical therapist who works full time, 44, female, married without children, living in Cincinnati, Ohio. I began my journey, however, with an emergency hospital stay for what they thought was AML. I had been followed since '92 for low WBCs. I was not too consistent in following with my hem/onc as I was feeling quite well. After a 3-month period of time during which I felt I was overworked and fatigued, on 10/15/99 my husband dragged me to the doc with a 3.4 hgb and I was hospitalized.
After receiving 6 units of PRBCs, I went home late the next day only after I promised to return in another day to begin that familiar routine of CBC/Ds and transfusions. My first 2nd opinion told me that I might have AA (that's how we found the AA/MDS ListServe) and strongly recommended treatment with ATG/CSA but suggested that I consult with one of his partners first. His partner felt that it was MDS and I began being HLA typed along with my siblings. We found a great match and I actually was very positive about the pending BMT. But we took a detour via MD Anderson 12/99 to talk with someone with more experience with either of these diseases (mine of course did not have a normal or definite presentation). There I was told it was not AA or MDS but that I could maybe tease out what it was by trying ATG. We had no sooner returned from Texas before MD Anderson called. It appeared that one of their pathologists who saw my BMB/A reviewed at their weekly roundtables wanted some more blood and was wanting to investigate the possibility of LGL leukemia. We immediately sent blood and located a guru on LGL at Moffitt Center who agreed to see me. In the meantime, we sent blood out to a lab in Washington state that Moffitt used for confirmation of the LGL. It was confirmed at a visit at Moffitt 4/00. I was informed that ATG might have had very negative consequences for me had I pursued it.
There are not many known cases of LGL (1 in 10 million worldwide) out there but it is a clonal abnormality involving a gene rearrangement on the T-cell that is confirmed via flow cytometry and a specific gene rearrangement study. It is usually heralded by neutropenia and often accompanied by RA. I, of course had the additional complication of anemia. I went on an 11 month protocol using low dose oral cytoxan daily @ 100 mg. It worked after about 2 months. My WBCs dropped even lower on this chemo drug. The last several months my counts began a slow downward trend. I began emailing with Marla on alternative approaches. If what I was doing didn't work, I was told I would just do it again. Not a pleasant thought. I began to be concerned about my liver, kidneys, etc since my docs weren't the least bit concerned about possible side effects down the road. My last transfusion was 5/26/00, I completed the cytoxan 4/13/01.
Starting in 3/01, my husband and I became vegetarians. Most recently I am following a similar approach as Marla, using BarleyGreen concentrated green food source and fresh carrot juice daily. We eat very little cooked food trying to boost the nutrients at the cellular level with a rawfood diet. Marla's courage to try this natural approach was contagious. My husband has joined me in this endeavor. My platelets have not been affected throughout my ordeal. I believe that my illness was from environmental sources, what I ate, how I lived, vaccinations, household cleaners.
Through the AA/MDS ListServe, I encountered 2-3 others with a similar condition to mine. Very few people, however, are choosing an alternative path. Marla suggested I contact you. I am interested in following your experiences. I have been feeling great since changing my diet and my counts appear to like it. I kick myself for not trying this before the chemo, but at the time my concern was to avoid transfusions which might affect my odds if I needed a BMT. My WBCs have moved from 1.2 to 2.2. This was the level of my WBCs in '92. I am now hoping to change this despite my docs thinking otherwise (in their words, be happy with what you got). When I saw my hem at Moffitt 4/01 he told me that he had been hoping for transfusion independence as the best outcome, that molecular remission was not the usual occurrence. However, my latest tests seem to indicate molecular remission. I am crediting a lifestyle change for this occurrence.
Everything that I found out about the immune system from medical sources seemed to indicate that when you had a disease of the immune system, you couldn't just strengthen the immune system as it might have dire consequences. But I felt that what I needed to do was strengthen my immune system, and Marla was the only one I knew who also sensed this. Just wanted to let you know that there are many of us out there with positive alternative experiences. The choices I make have been largely affected by the folks at Hallelujah Acres (www.hacres.com), Dr. Day's testimony (www.drday.com), Marla and the Gerson Clinic. Diet and lifestyle changes are the primary recommendations. We have been cleaning up our home and steam distill all our drinking water. Will keep you in thoughts and prayers on your journey,
Sincerely,
Ali Holder
ID: 346
Member: Bridget
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
My story, well I'll give you the short version. I was dx with SAA in the fall of 89. I was 17 years old. One day I went from school to the ER with heart palpitations. I was always tired and always wanted to sleep. I had a lot of bruises as well. Believe it or not the ER doctors never did a CBC so my counts being low was not caught until I went to a f/u visit to my PCP. They just did it as routine and I went back to work and school. They got results later that day and I was admitted to the Hospital. When I look back I remember how extremely tired I was the summer before school. I was on iron supplements that summer because I was anemic on my doctor's visit before summer vacation. I could go on and on, it's a long story( including being scared to death of a transfusion ..they came in the middle of the night to hook me up...I about fainted).
Anyway, I was treated at the NIH with ATG /cyclo/pred in 2/91....it worked right away for me. I would relapsed again whenever I caught the flu ...cyclosporine by itself would usually bring my counts up to low normal. I was married in October of 94 and we decided to try for a baby. My counts were pretty stable. I found out I was pregnant in 95 and my counts started a downhill slide. My platelets dropped as low as 3, but I wasn't given platelets because they needed them for when I would deliver.
My Hgb dropped to around 7.5 before I was transfused. I still worked full time as a nurse /being transfused every few weeks until my daughter arrived 8 weeks early in 6/96.Then I found out I had SVT (long story there too, in other words, my heart likes to beat very fast sometimes) After I delivered I was put on cyclosporine but it didn't seem to help. So, in 2/97 I was given ATG /cyclo/pred again. I responded slowly this time. They told me then and there that they had no knowledge of this ATG working a third time.
Well, I got quite a surprise in 97 I was pregnant again. We definitely were not expecting this. The doctors all told me to abort him.......but I would not (long story .letters from my doctors, encouraging me abort him). At this time my counts were stable and I decided to cont. with the pregnancy. They wanted me to start cyclo right away. I made a bargain with them and started cyclo at the end of my 3rd month. ( long story there as well..not much info. on AA and pregnancy) Amazingly, my counts stayed in the low normal range with him. I never had to be transfused. Although, I started having contractions around 20 weeks, they thought it was due to the cyclosporine. He was perfectly healthy and was born at 37 weeks 6/98. I even went off cyclo...after his birth so I could feed him.
I basically was fine until around August of 2000. I needed to have surgery and during a routine CBC they found out my platelets were dropping, every week I would have another test and my platelets would still drop..until finally my HGB and WBC began dropping as well. They thought it was my AA again and did a BMB. Turns out that I have now progressed to MDS RARS I think its called RMCD or something like that now because all 3 of my cell lines are affected. My WBC stays around 2.4, ANC 800, Platelets 20-30, HGB has been as low as 4.0 but I usually get transfused at 7.5 or 8.0. I also have a deletion on chromosome 13. I have no matching relatives for a BMT and I'm afraid I won't do the unrelated match even if they found one. They 30% success rate scares me silly. I might live longer without a BMT than if I had one. Oh, by the way I'm adopted and we did test my sister, she wasn't a match.
Not everyone is aware that I have this disease. They don't understand and it's hard to make them understand without going into a long story. People like to hang on the word anemia and don't understand how it is a life threatening disease. They say things like,"take some iron" to which I reply, "I have iron overload, iron is the last thing I need." Then they say, "you don't look sick" therefore I'm not sick! To which I reply," thank you, I do feel good today, I had 3 units of blood yesterday". OOPS, I mentioned the word "BLOOD transfusion". They don't understand I can feel well one day and do most normal things and then feel so bad another day that I can't move off the sofa or play with my children because I'm so tired. The fatigue is so unexplainable unless you have had this disease. I get fustrated just trying to do the normal things.
In February of 2001 I tried cyclosporine at 300mgs BID, I couldn't tolerate it this time at all. I weigh 108, so they decreased the dose and added MMF at 1000mgs BID. I tried this until May. NIH decided it wasn't working and I decided to stop. I refused the Androgen/male hormone. I tried B6 200mgs BID. I was told about Epogen but my erythropoetin level is very high and my Dr. said it was unlikely to work. I decided to get a port -a-cath in the fall for desferal since I'm in iron overload/ and so I don't have to be stuck 6 times to find a vein for transfusions.. Also, the theory is; if my iron comes down maybe my counts will go up. I have had Iron overload for over 10 years. Then I will try ATG again. I had the horse serum first 2 times and now they will use the rabbit serum. I'm a little anxious since I had to be desensitized to the horse serum. I'm afraid of a really bad/fatal reaction this time. In the meantime, I have been off all meds this summer for a little breather and to have time to enjoy my favorite time of the year.
I hear all these stories and I see a lot of people are upbeat and optimistic. I would love to be that way. I've learned to take one day at a time and try to live it to the fullest. I look at my children every night and I thank God for them. They are truly miracles. I hope in the future that I can survive this disease to be there for my children and maybe even have another one. I've had this disease 11 years now. On one hand I say hey, I made it 11 years! On the other hand, Why have I had to live with this fear for 11 years?
Day to Day
I think about this
I think about that
I wonder about the what if's
I wonder about the what not's
I forget on a good day
I remember the next day.
Bridget from Maryland
29 yrs
DX AA in 89
TX ATG/cyclo/pred in 90
Partial relapse/ TX with cyclo
Total Relapse in 95/96
TX ATG/cyclo/pred in 97
AA to MDS RARS in 00/01
2 successful pregnancies, wife to James, mother to Sierra Rose age 5 and Noah James age 3
ID: 347
Member: Cindy
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
My world was turned upside down in the Fall of 1987. I went from working full-time at St. Paul’s Hospital, to being a patient there in the course of one day. I had gone to work that day a little frustrated because I’d had a difficult time eating my breakfast that morning. I had what I thought were cold sores on my tongue, which made it very difficult to chew my food. I also had noticed what I thought was a rash on my lower legs. I was quite tired and had developed some large bruises on my body that I couldn’t account for. Soon after I got to work, I went to visit the Employee Health Nurse. She looked at the sores on my tongue, “rash” on my legs and bruises, and told me that I had something systemic and something topical. She said that I should go to see my family doctor as soon as my doctor’s office opened, and ask to be seen as soon as she could.
My family doctor’s office was just across the street from St. Paul’s Hospital, so I walked over there, told the receptionist that I had been sent by the Employee Health Nurse, and had a seat in the waiting room. I only had to wait about half an hour before my doctor was able to see me. She took one look at the sores on my tongue, “rash” on my legs and bruises, asked me some questions, and ordered a blood test for me. She said that I could go back to work after the blood test, and she would call me once she had the results. I worked for about an hour or two until she called me. She said that all my blood counts were low, that I should stop working, and wait for a call from a haematologist. Not too much later the haematologist called me, and said that she wanted me to go to the emergency department, because she wanted to admit me to hospital. So I thought I had better call my parents to let them know what was happening. My Dad answered the phone, and in telling him what was happening, I started to cry. I didn’t really understand why I was being admitted to hospital, and the shock of it all hit me as I was explaining it to my Dad.
After the phone call, I headed to the emergency department, where I sat waiting for what would happen next, whatever that might be. Eventually a nurse came and had me exchange my clothes for a hospital gown, then had me lay down on a stretcher. I waited there until an intern came and took my medical history. Later on the haematologist came to talk to me. It didn’t take too long until I was transferred to a medical ward. There I received two units of red blood cells. The haematologist came to visit me on the ward, and said that I would be having a bone marrow biopsy the next day. She also explained that the “cold sores” on my tongue were actually hematomas or blood blisters, and the “rash” on my legs was something called petechiae, which occurs when small superficial capillaries burst.
That next day I had the bone marrow biopsy, and later on that day the haematologist came to tell me that I had been diagnosed with a very rare blood disorder called Aplastic Anemia. The cause of this blood disorder is often unknown, as it was in my case. Aplastic Anemia occurs when your bone marrow stops producing all three blood cell types. These include your red blood cells, white blood cells and platelets. When your red cells are low, so it your energy level; when your white cells are low, you are more prone to infections; and when your platelets are low, you bruise easily and may have spontaneous bleeding.
The haematologist said that they would see if my sister, who is my only sibling, would be compatible as a bone marrow donor. They would do a bone marrow transplant if she was compatible. It turned out that she wasn't a compatible bone marrow donor, and at that time there wasn't an Unrelated Bone Marrow Registry, so a bone marrow transplant wasn't an option any longer. They next tried various drug therapies to stimulate my bone marrow into working again. After my first two nights in the hospital in a 4-bed room, I was transferred to a private room with reverse isolation precautions. Everyone had to wash their hands before they entered my room, and the room had a special filter that kept out all micro-organisms, so that I wouldn't develop any infections due to my low white cells.
During my two month stay in hospital, I received two different intravenous drug therapies. Neither or these worked, and each had very unpleasant side effects. Throughout my stay in hospital, and for another seven months afterwards, I required both red cell and platelet transfusions to sustain my life. I received these transfusions weekly and sometimes twice a week. After my discharge from the hospital, I was started on an experimental oral medication. I spent two months convalescing at my parents' home, and then returned to work on a part-time basis. I resumed working full-time after another two months, and have continued to do so. The oral medication eventually started my bone marrow working again.
I am currently working as a Pharmacy Technician at Lions Gate Hospital. One of the primary reasons that I joined the Speakers' Bureau, was to have the opportunity to thank people like yourselves who donate blood. I will never know the blood donors who donated blood for me, but want to tell the blood donors that I do meet, how much their selfless contribution of themselves means to me. I wouldn't be here today, if it weren't for the people who took the time to donate blood. I am sincerely grateful to those who gave of themselves, so that I could live.
ID: 348
Member: Mechelle
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Mechelle DX SAA 9/98 Transfusion INdependent Cycle
Leading a Normal Active Life in Remission!
My name is Mechelle, I am 34 years old and have to little boys . I was
diagnosed with Severe Aplastic Anemia in Sept./98. I was playing with my
children out in the yard one morning and noticed alot of bruising and
pettichie, I went to the Dr. and had some blood tests done. That evening I
found myself in the Leukemia & BMT ward in isolation, I remained there for
21 days. I had my first round of ATG/Cyclo/Pred in Sept./98 (my brother was
not a match for a BMT), I was then transfusion dependent receiving platelets
every 7 days for 10 months and Hgb every 21 days for 14 months. After a
year of transfusions and no response it was decided to repeat the
ATG/Cyclo/Pred, so exactly one year later I had ATG again. I was then
transfusion dependent on Plat. & Hgb for approx. 2 months, then my counts
stopped dropping and stabilized. I haven't had a transfusion in almost 20
months, (there were times when I wondered if I would ever be able to say
that!!). My counts are still low, but they are safe and stable. Slowly my
counts continue to coming up, it is very hard "waiting". I know it could
take years for my counts to come to a "somewhere normal" range. As long as
they are coming up, I am happy and relieved!!
Before AA entered my life, I had never been sick a day, never been in the
hospital except for the birth of my children!!
In September it will be 3 years since my diagnosis. I am still on Cyclo.,
last year we tried a slowly taper, my counts remained stable throughout the
6 month taper. Just as I was finishing the taper, my counts started to
drop. The Cyclo was restarted and my counts bobbed up and have been stable
since. We are going to try the taper again in Sept. I lead a very normal
life, I have no problem keeping up with my active little boys. Most people
are very surprised when they learn of my serious illness. They usually say,
"But you look so healthy". I feel good, my energy level is pretty good. Im
very thankful for my life, that Im here and beating AA. AA has taught me
many important lessons in life. It forced me to look at life in a much
different way, ultimateley these lessons have had a huge impact on the
person I've become. Sometimes negative things can have positive outcomes.
Don't believe everything you read about AA, many, many people live with this
disease, or better yet, beat it. It can be done!
ID: 349
Member: Hobbs Family
Last Updated:
Diagnosis: Aplastic Anemia and Bone Marrow Transplant
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
http://hometown.aol.com/kelseystatus/myhomepage/profile.html
http://www.caringbridge.com/ri/kelsey/
ID: 350
Member: Shari
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
http://www.geocities.com/HotSprings/Villa/4803/
ID: 351
Member: Kristine
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
http://www.vlib.com/christine/diary.html
ID: 352
Member: Louise
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
http://aafa-ner.org/aa-mds/vince&.htm
ID: 353
Member: Craig Kinneson
Last Updated:
Diagnosis:
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
Let me begin this message with my warmest thanks to each of you who has lifted
me up during the past 9 months. It fills me with great joy to know that I have
found friendship and love from so many great people in so many areas of our
world.
Today, I learned that my bone marrow is nearly normal once again. (By "nearly"
normal I mean normal with the exception of slightly reduced Megakaryocytes -
that which creates platelets). I'm told that I can live normally again without
restrictions.
Although my blood counts remain below normal values, I am confident that they
will return to normal within a few months. I have been transfusion free for 45
days and have seen steady improvement in my counts (especially platelets - now
60) since returning home from Seattle. Therefore, I believe that I have been
cured of my aplastic anemia.
Our prayers for healing return to prayers of thanksgiving.
Please feel free to call us to celebrate, to ask questions, or just to keep in
touch.
Craig
w. 615-599-2688
h. 615-595-4280
"Therefore, if anyone is in Christ he is a new creation; the old has gone and
the new has arrived!" 2 Corinthians 5:17
ID: 354
Member: Candace Green
Last Updated:
Diagnosis:
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
It was great to hear from you. My husband was diagnosed with Aplastic Anemia
in the fall of 1995. We have been through it all. You are right about there
not being many places to share experiences. I would like very much to be part
of a discussion forum. Thanks for contacting me. Candace Green
ID: 355
Member: Hazel Campos
Last Updated:
Diagnosis:
Date of Diagnosis:
Age When Diagnosed:
Current Age: 26
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Wow! I just found your website and I am impressed with what you have presented to the world! My name is Hazel and I am a survivor of aplastic anemia. I'm now 26 and have been in remission for about 10 years. Aplastic anemia certainly impacted my life as well as my family's. I commend you for turning this negative event in your life to something positive to support others out there who have gone and/or are gong through what you and your family are facing. Your site has inspired me to share my own story - I've always wanted to return my good fortune in some way, just never knew how... I think I do now. As soon as I get it together, then I'll post it to your page.
Hang in there! Keep strong in your mind and in your spirit! You and your family will be in my prayers. Please feel free to contact me, write to me, let me know how things are - even if you do update your journal. I'm an e-mail junky and am available if you ever just want to vent - I can certainly identify with your position. Take care and I hope to read more on your progress.
Sincerely,
Hazel Campos
ID: 356
Member: Karen Brother
Last Updated:
Diagnosis:
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
I just finished reading your journey with AA, my brother has just recently
been dx and has started tx. @ MD Anderson in houston. Like you, he has had a
vey unpleasant response to treatment and we all have experienced the heart
wrenching roller coaster ride of diagnosis, treatment, alternatives,
prognosis. He just turned 45 and is a candiate for BMT, we (his siblings)
haven't heard if we are a match. We just pray for remmision for all patients
who suffer from this horrible disease. thank you for your Web site, i will
look forward to reading your entries. karenaitchison@aol.com
My brother had worked as a mechanic for UPS and was in contact with cleaning
solvents many years ago...am wondering if this could be a link.
ID: 357
Member: Annie & Nicholas
Last Updated:
Diagnosis:
Date of Diagnosis:
Age When Diagnosed:
Current Age: 2
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
My name is Nena and I am Annie and Nicholus' mom. My daughter was diagnosed with AA when she was 2 yrs old. She did well with prednisone therapy and the major worry was when she was old enough to begin her period. The doctors believed that if she had her period and lived through the bleeding then she would be in remission. Well, after living through her periods, the doctors said for us to forget that she ever had AA. She was in remission and it was as if she had never had it. Low and behold stuff happens.
July 1999, my daughter was once again having bloody noses and feeling very tired all the time. She began having transfusions every day or two and in August she was transported to UMC in Tucson, AZ to have another bone marrow biopsy. We were then put in a room with several people and it was announced to us that these people where the BMT team. Annie had gone into severe AA. They decided to type all of the family (no one matched) and prepare her for a BMT. They said that they would put her on cyclo. (Neoral) and see if that would keep her levels up high enough until they could hopefully find a BMT match for her.
Well, that was 2 years ago and she has been doing well with the cyclo. therapy and has not had a BMT mentioned since. Recently her hemoglobin count has been steadily dropping, so they increased her cyclo. to see if that will maintain her counts. We can only hope and pray.
My son, at the age of 15 yrs was told that he also had a blood problem. They could not confirm that it was or was not AA (I never understood this). When we moved last year to Reno, NV a blood doctor there said he had ITP. He has been doing very well with prednisone therapy and managed to get his platelets to 214k. However after the doctor took him off the prednisone his platelets began to steadily drop. This past Thursday he had to have a bone marrow biopsy. The doctor said his platelets were at 34k (nothing new for Nick) but the other factors were also either low or at the low side of normal. His WBC was at 2.1. They immediately put him back on prednisone. He had another blood test today and in 4 days his platelets have increased to 91k but his WBC is only at 2.3. When I asked the doctor what this ment he said that it does look like it may be AA and that he may be going into bone marrow failu! re. We should hear something this week regarding the bone marrow biopsy.
I think that this affects me more than my 20 yr old daughter or my 19 yr old son both possibly with AA. Although I did overhear my son crying 2 nights ago. I just thought I would write to you because you seem so understanding. Even though I am only the mother and not the patients, it is very hard for me.
After reading everyones story in this site, I keep reading about ATG. This is the first time I have ever heard of this. I am going to bring this up to my kids doctors and see if my kids are possible candidates for such a procedure. I hope that your daughter is doing well. I am sorry to go on and on, but I just felt like talking with someone that can relate to what I am feeling. To be honest with you, my ex-inlaws raised my two children. Therefore, I was not directly involved with my daughters treatments. Not that I wasn't there for her and her illness, but it wasn't the same as if she lived with me. My son lives with me now, so I know first hand what my inlaws went through. I talk often to them regarding both my daughter (who still lives with him) and my son, and every question and concern I have. Unfortunately they live in a small country town and don't have all the resources that we do! in a larger city. However when I talked to my ex-mother inlaw tonight and mentioned ATG she had never heard of it either.
OK, I am rambling now, so I will go. I truely thank people like you for supporting those of us in the same or simular situations. It has really helped me to read all of these stories. It has created more questions too. Thank you for your time.
Sincerely,
Nena (Annie and Nick's Mom)
ID: 358
Member: Langston's mommy, Peggy
Last Updated:
Diagnosis:
Date of Diagnosis: March 21, 2001
Age When Diagnosed:
Current Age: 4
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
My little boy, Langston, went in for his 3 year checkup last year and his platelet count came back low. We were sent to Childrens Medical in Dallas and was diagnosed with Aplastic Anemia. We did the immunosuppressive therapy with ATG with no results. He needs platelets every other week and red cells every 3 weeks. We give GCSF shots twice a week and cyclosporin/bactrim twice daily. I was pregnant during diagnosis and his brother is a perfect match. He is scheduled for BMT mid January.
The transplant has been postponed due to a severe case of sinusitus....it has been 3 weeks and still not there yet. I have made a site for Langston http://hometown.aol.com/boomerbooo/langston.html
ID: 359
Member: DANIEL STRASBERG
Last Updated:
Diagnosis: AA-HOMEOPATHIC TREATMENT-CURED
Date of Diagnosis: 03/30/2001
Age When Diagnosed:
Current Age: 20
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
MY SON GABRIEL STRASBERG HAS AA. HE IS DOING HOMEOPATHIC TREATMENT AND DIET FOOD.-
TODAY HE IS GOING VERY WELL, HIS BLOOD COUNT GROWING UP AND HE IS BEGINING HIS REGULAR LIFE.-
I WOULD LIKE EMAIL WITH SOMEBODY ABOUT APLASTIC ANEMIA AND HOMEOPATHIC TREATMENT.-
MY EMAIL IS dstrasberg@cponline.org.ar
________________________________________________________
HE WAS DECLARED OUT OF SIKNESS ( 2004/03) AND DOING HIS NORMAL LIFE ( 2004/09). HIS PLATELETS ARE OUT OF RANGE STILL, BUT ALL IS OK SAID HIS HOMEOPATHICS MD.-
ID: 360
Member: yuedian yang
Last Updated:
Diagnosis:
Date of Diagnosis: 1997.10.7
Age When Diagnosed:
Current Age: 28
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
I am Chinese.i can't express myself freely in english,sorry.on that day in 1997,i judt find some blood point on my back.i went to hospital and had blood test.the doctor said my white blood cells and plateletes were very low. i had to stay in hospital formore than 4 months.i also had Chinese medicine(herbs),which i am still having now. At present ,my wbc and plt have risen .but they are still under the normal.
ID: 361
Member: Bradley Richard
Last Updated:
Diagnosis: aplastic anemia
Date of Diagnosis: 5/00
Age When Diagnosed:
Current Age: 5
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
This is Bradley's dad Jon. Bradley was diagnosed in May of 2000 with SAA
He went through the ATG and Prednisone treatment his response has been very
slow. His platelets have been around 30000-40000 the last several months.
White count is up and down and his hemoglobin is around 10 usually. We are
on cyclosporine twice aday and GMCSF twice a week. Basicly just waiting
for a miracle since his sister is not a match.
ID: 362
Member: April Hixon/42 yr old Mom
Last Updated:
Diagnosis:
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
My Mom was 42 years old and completly healthy as far as we knew except for some bruises that she had begun get get. We had discussed the bruises but didn't consider it a major deal. My Mom was in the prime of her life, her first grandchild was born three weeks before she died. Please be careful I never dreamed I would be 21 years old and without a mother to ask advice from.
ID: 363
Member: Jason Melin
Last Updated:
Diagnosis: Aplastic Anemia
Date of Diagnosis: 11-25-99
Age When Diagnosed:
Current Age: 26
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
At 24 out of college, you find yourself invincible to anything. You tell yourself that you can handle anything that life can throw at you. Two years later, I realize that life is much more precious and family and friends are too important to even put into words. I was a very active young man and during the fall of 1999 while on one of many hunting trips I noticed that I was always short of breath, even though a I also suffer from Asthma I noticed that I was not wheezing but just couldn't catch my breath. As the fall went on I noticed that I was bruising a lot, but once again, I was outdoors all the time and walking through the woods you trip and bruising after a hunting trip is nothing out of the ordinary. During deer season, November 6th I noticed petichia for the first time, they appeared on my hands and arms and also around my ankles and feet. But once again I just chalked up to hunting. Finally when I came home for Thanksgiving, my folks couldn't believe how pale I was, the pitichia were now everywhere and breathing was difficult and I had very bad headaches. Still I just figured it was a flu bug that had to run its course. My mom suggested a visit to the doctor before I flew down to Dallas for business for three weeks. That was on Friday, November 25th 1999. As soon as Dr. Burns walked into the room he ordered labs. Later that afternoon they were amazed, that I was still walking and alive. My initial counts, PLTs >2,000, Hgb, 6.5, and WBC, 0.0. That night I received the first of many to come blood and platelet transfusions. After spending 5 days in a hospital in Fargo, ND I was transferred to the University of Minnesota Hospital, were I met my current doctor and my angel, Dr. Mark Reding. We discovered that my younger sister Tara was a perfect match for a BMT, however we decided to proceed with the ATG treatment. The reason was simple at the time, the risk were much less with ATG, if the first or second treatment did not work Tara has the medicine to heal me. I was in the hospital until the 14th of December. The ATG was very slow to respond I was dependant on transfusions until March 8th, and then after that my counts were very slow to return. This proved to be the hardest part, I knew that I could function and live a normal life but the chance of relapse was ever present and still is today. Finally one year after being admitted to the hospital my platelets made it past the 150,000 mark. Today all three are in the normal range, the low end, but still normal. Two years later, I know that I'm not invincible, I know how precious life is, how important family and friends are for your well-being. But the battle must start within you! You must start fighting the monster from within and with a positive approach. We contain the best medicine of all the positive human spirit that will not be defeated!
UPDATE: Jan. 21st 2002 - LATEST BLOOD COUNTS!
Hemo - 15.7
WBC - 4.7
Plts - 239,000 - highest ever!
UPDATE - NOVEMBER 21st!! Well it has been a little while since I last updated my blood counts but here is some great news to share with you all. On my last check up my platlets were at 266,000, Hgl was at 15.5 and my WBC was at 5.8. If feels good to go to the doctor and not be stressed out anymore. Please contact me if you have any questions or you would just like to chat!
Update July 1st 2003, I have been really busy and out an about, everything looks great and the doctors are more than pleased. My counts have stabalized and haven't fluctuated too much lately!
Jason
Faith does work!
ID: 364
Member: nicole montague
Last Updated:
Diagnosis:
Date of Diagnosis: 16/3/00
Age When Diagnosed:
Current Age: 15
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
m disabled and she refuses to have her friends visit her at home in case they sere me. she has also missed a great deal of schooling in the last two years. she is still on cyclosporin and has regular transfusions but her blood count is not getting any better.my aughter has chanhed from a pleasant child into an aggressive animal. she is constantly attacking me and physically abusing me as i am not able to defend myself. she has tken to smoking and will not be stopped. her behaviour is awfull and i think the cyclosporin is the cause of her change in behaviour. i constantly worry about her future and can only pray that i will be around to care for her in the future.
m montague
ID: 365
Member: Howard G. Thorne
Last Updated:
Diagnosis:
Date of Diagnosis: 08/16/01
Age When Diagnosed:
Current Age: 64
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Just about like everyone else's although hampered with severe back and leg pain which is probably arthritis. They can't treat it because of SAA. Going into hospital on 12/26/01 to repeat ATG. Thank you for making this site available. We find it very interesting, sometimes consoling and sometimes frightening but better to know what is ahead of us.
ID: 366
Member: Kathy Meyer
Last Updated:
Diagnosis: What Does Kathy Have? BDL
Date of Diagnosis: Sept. 2001
Age When Diagnosed:
Current Age: 68
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Note from Bruce - Copied to the forum also. I was visiting in NY for my 50th HS reunion. Had a cough that I couldn't shake. I went to a dr.
He said that he would reccommend a blood test, but since I was on vacation I prob. wouldn't want one.
I had 10 days left and said I'd take the test. At 9 that night he called. Blood level was 4.8 and I was
rushed to the hospital. Spent next 7 days there and then returned home to Florida.
I have had a horrible experience with the hemotologist down here. Went for transfusion on Christmas
Eve (which he had written the orders out!). The hospital called him and he said he didn't know me.
So....he is history. My regular dr. is extremely caring and I was getting more info from him than from the hemotolgist
who was charging $900 for every office visit.
I just want to know what this is and why I got it. What is the general prognosis? (Years?)
ID: 367
Member: Les Bannah
Last Updated:
Diagnosis: SAA since 1994 - Cyclosporine
Date of Diagnosis:
Age When Diagnosed:
Current Age:
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Update Tues 26th Aug
2003....................................Not too bad a try but no cigar, dropping my cyclosporin level with near normal blood counts was looking good for a while but as I dropped below 100 mg per day my blood counts began to reverse - very gradually at first then fairly rapidally. The platletes again being the the most reactive dropping from 260 to 75 over a period of 3months.
From my graphs the blood count fall seemed more gradual this time than the last attempt to reduce the dosage and I find that encourging. After 3 months though it was obvious that the counts were not going to hold at any level and we decided to resume cyclosporin A at 200 mg's per day which I am currently on. Resuming the dosage again had an immediate response in my platlette level now around 100 Hb's at 12 and climbing gradually.
My liver function tests show an elevated level of ALT's and its still a priority to strive for a lower level of cyclosporin dosage to maintain my counts. From the exercise it appears that 150 or 125 might be a maintainable level and I hope to again wean to that level but hold it there say at 125mg minimum for a long as possible.
..and so we go on.
Update Saturday 10 August 2002:...............................................................................
Reducing cyclo further I am now on a dosage of 150mg per day, last blood test was on Friday 2nd August 02, HB 15.3, Rcc 4.6, Wcc 7.8, Neut 3.99, Plat 261.
I was extremely pleased with the latest results but no celebrations yet as I have been caught before with good results. I'm feeling better this time round, my head is clearer and apart from a fair amount of tirednes (which is not reflected in my HB level) I'm coping ok. I have my doctors appointment next week and if my next blood test in a month time confirms the results above I hope to drop to a level around 125mg's.
..........................................................................................
Update Sunday 7th April
2002:
I am reducing my cyclopsporine for a second attempt at finding a lower maintainable level. My dosage has been 200mg per day and my levels look good after several years treatment on cyclosporine initially diagnosed 1994 I commenced cyclosporine in 1997.
We have started the reduction with alternating 200 -175 -200 on sucessive days for 6 weeks at the end of that time my blood result is still looking good HB 15.6, Rcc 4.7, Wcc 7.4, Neut 3.61, Plat 247, MCV 100. I expect to reduce to 175 mg per day after my next appointment Fri 12th April 2002 and will continue with that till my next blood test in a further 6 weeks time.
I'm only experiencing a slight cold at present waking with nasal blockage that clears early in the day - which is not unusual with winter coming on here.So far so good.
............................................................................................................................................................................................................................................. April 1994.
I was diagnosed with AA in April 1994. My blood counts at the time were Plat 13, Hb 8, Neut < 5%.I was initially Treated in Royal Brisbane Hospital with Horse and Rabbit atgam, but unsuccessiful in both, following that I had a good blood response to prednisolone & oxymetholone but suffered extreme side effects in the first two years.. triggered diabeties, head pressure, nausea along with the effects of very low Hb counts.
I do have a good bone marrow match in one of my two sisters (a 9 point match) but the Doctors did not opt for a bone marrow transplant in my case.
A transplant has been seriously re-considered twice as my bone marrow has failed 3 times since I was first diagnosed.
Three years and 4 hospital admissions later I was put on cyclosporine in 1997 after my 2nd Atgam treatment failed, thankfully have been able to build and maintain my own blood counts since.
I commenced on 500mg per day of cyclosporine while at the same time gradually reducing the prednisolone from 50mg's a day down to zero in 5 weeks and then reduced cyclosporine to around 300mg (150 morning & night) and then gradually to 200mg nightly.
We recently tried in 2001 to reduce the cyclosporine to a lower maintainable level but when we got to 100mg's (50 morning & night) my blood counts began collapsing rapidly. This necessiated an increase back to 300mg until they began to build and then gradually reverted back to 200mg's which seems to be the optimum level in my case.
I should also add that these levels of dosage are of course guaged on patient weight and would of course vary from patient to patient. My normal weight in 1994 was 82kgs and am now 110kg's in 2002 from the various treatments since that time.
I have charted my own treatment and bloodcounts on my computer since 1994 with the co-operation of the doctors & pathology dept's and have used the documentation at times to prove effects and assist in guiding my treatment.
Like most people with AA I have researched AA & blood extensively in the 8 years and I read with interest the comments on vitimins in this web sight ... I have noticed several blood effects and in my case can tell that my platelet count has a good and fairly rapid response to shark liver oil as does my Hb to B12 - however it does not sustain nor continue to rise. The Platlet count to shark liver is best and will hold up for a while after a month of taking them. I also (using my own case) DO NOT recommend the use of immune booster type supplements, High doses of Vitamin C etc as this is opposite to the treatment of immune suppressant's such as prednisolone and cyclosporine. Though normal vitamin supplements are fine.
There does seem ultimately to be an autoimmune attack on the blood of AA patient's by our own immune system regardless of the initial cause of bone marrow failure and immune boosters seem to increase that attack. This is genrally explained as - our killer T cells do not like the look of our blood cells and proceed to kill them off ..but by boosting the immune system I feel only serves to increase the severity of the attack. I'm getting a bit long here as this is only meant to be comments.
I have enjoyed visiting your web site and look forward to droping in again I would be only to pleased to help and assist other patients that that have chosen to fight this horrible disease.
I have begun to reduce my cyclosporine dosage for the second time - looking for a lower maintainable dosage.
ID: 368
Member: Glinda Miller
Last Updated:
Diagnosis:
Date of Diagnosis: mid Oct.,2001
Age When Diagnosed:
Current Age: 74
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
I would definitely like to hear from you since I am so new at this AA disease. Mine started with extremely blood counts. I have had numerous platelet transfusions. Also I have had numerous blood transfusions. I now go to the Doctor's Clinic after having been in the hospital much longer that I wished for and last Thursday I was there and had a blood transfusion, We (son, dau-in-law) were just getting ready to leave and for the first time I experienced a reaction to the blood transfusion - an experience I will never forget.
If you would and have been in this AA disease for much longer than I have, I would really appreciate getting advice, etc., from you.
Thanks in advance. Glinda
ID: 369
Member: Danny Coulbourn
Last Updated:
Diagnosis: SAA on and off since 1983 - ATG 1x Great Response!
Date of Diagnosis: 7/13/1983
Age When Diagnosed:
Current Age: 31
Currently in Remission: True
Transfusion Dependent Now: False
Your Story:
I was diagnosed with idiopathic AA back in July 1983. Back then, ATG was
> just beginning to be researched and many people were hesitant about using
> horse serum to treat AA. I was put on androgens - oxymetholone and
> prednisone, while I was waiting for a bone marrow match. My little sister
> was not a match. Back then, they had hospital beds waiting for me at
John's Hopkins and up in Seattle Wash. My blood counts slowly begin to increase.
> I was on oxymetholone for about 5 years. After that time, my counts were
at a mild level - hgb - 12-13, WBC- 3000, Plt- 70-90000. After being on
> oxymetholone for 5 yrs, I began to form tumors on my liver. One of the
many side effects of the very strong androgen. The doctors took me off that
> medicine, and I seemed to hold those mild-normal counts for about 15yrs.
> Then, after a bicycle accident in 1997, I noticed those dreaded anemic
> symptoms - you know what I am talking about.
>
> Since then, I have been treated up at NIH. I love these guys - Dr. Young,
> Dr. Tisdale, and Dr. Kang. And the nurses are the best that I have ever
> seen.
>
> My counts bounced around from moderate to severe for about 3-4 years, then
> they just began to plummet in 2000. Before 1998, I never had a blood
> transfusion.
> I held off the ATG treatment until I had to, mostly my decision and
> partially the decision of the NIH doctors, since they did not have much
> experience using ATG for moderate AA. Since I seemed to respond to
androgen therapy when I was younger, the doctors put me on Danazol. That seemed to
> stabilize me for a while.
> I began my ATG/Cyclo/Mycophenalate treatment on 1/4/01. That stuff makes
> you pretty sick, doesn't it? Not really at first, but after about 10-15
> days, those antibodies began forming in my body, and I could not hold any
> counts - Plts dropped down to 2000. My last blood transfusion was 2/03/01.
> In Feb 2001, we noticed that my Retic Abs as well as all of my counts
began going up. Today, my counts are a hell of a lot better than last year - as
> of 12/19/01- HGB - 13.5, Plt - 105000, Anc - 1150, WBC - 2800, Retic Abs -
> 96000 or 3%.As of 3/05/02 HGB- 14.2, WBC- 2700, ANC- 1700, PLT - 119000, RETIC ABS - 2.96% OR 96000, MCV- 102.
> I am feeling great, my wife and I have our first little girl on the way in
> March. I wish that WBC/ANC would go up more, but I am just thankful that
I am living! Stay positive everyone! Don't try to control this thing by yourself - Give up that control and give that decision over to God. Ask God to heal you physically, mentally, and spiritually everyday! God Bless all of us! Get in touch with the National Institutes of Health!
Update as of 11/28/2002. HAPPY THANKSGIVING EVERYONE! It has been almost 2yrs now since I first got ATG/Cyclo/Mycophen and my counts are, I believe, the best ever.
As of 11/01/2002 - HGB-14.0 WBC 3.4 ANC - 1.9 HCT - 40.0 PLT - 130000 and MCV - 101.0. Based on my MCV count, my bone marrow is still being stressed a bit. I will be going up to the NIH (Bethesda, MD) for my 2yr follow-up and Bone Marrow in January 2003. My little girl is now 8 months old, and I am glad that I am feeling well so I can keep up with her and my wife. Two years ago my CBC looked like this: HGB - 7.5 WBC - 1.8 ANC- 0.5 PLT - 18000 (these got as low as 2000) HCT - 20.0 and MCV - 115.0.
I am now approaching my 20th year living with Aplastic Anemia. Seek Help from NIH. These doctors and nurses are the best in the world.
DC -SAA on and off since 1983 - ATG 1x Great Response!
ID: 370
Member: Randy Ramage
Last Updated:
Diagnosis: SAA June 26 1X ATG
Date of Diagnosis: June 23/01
Age When Diagnosed:
Current Age: 48
Currently in Remission: False
Transfusion Dependent Now: False
Your Story:
Update as of March 2002 Randy passed away from Fungi Septicemia 11 days after a bone marrow transplant from his sister Wendy.
As of Jan 1/02
Hi! I am a Canadian who has lived in England with my Irish wife Eileen since 1984.
In June I had the typical AA symptoms of spontanious bruising, small red spots (petechiae), out of breath and heart racing after doing a small amount of exertion, and a cough that I couldn't get rid of. In seeing a Dr. (a haemotologist) I was told I had dry lung and to put my head over hot water with some Vicks in the water. Fortunately she also suggested a check of my blood (at my convenience). I went later in the week and was told it would be 2 weeks before any results. I was contacted later the same day and rushed to the hospital. A week later after more blood tests and bone marrow aspirations (checking the marrow) and trephines (checking the bone cellularity) I was diagnosed with severe AA.
I stopped working and started researching the condition and started building up a glossary of all the terms I had come across to ensure I really understood what I was dealing with. Eventually I made a web site with all my research on the subject and a glossary. It is at http://aamdsglossary.co.uk
My Hb count tries going down to zero but I find that if I catch it at about 8 (should be 13 to 17) it's not too bad. Platelets have been down to 1 rather than the 150 to 330 they should be. That results in not only bruising and small red spots all over but also a disorientation and mental muddiness. I get my transfusions of those if they go lower than 18. My neutrophil counts are usually .1 and should be 1.7 to 6.1 ( x 10,000,000,000 per litre). Can't do anything about that.
I had the ALG (Horse version) starting September 27th 2001 and went through the chills and shakes normally experienced with that. I didn't find it difficult, just interesting. Bloated up with water retention and gained almost 20 pounds which was a bit uncomfortable but only very mildly. I had a central venous catheter put in rather than the Hickman line as I had read about the Hickman lines getting infected and wanted a more temporary line in. They are much the same but the central venous catheter is used for more temporary work. I actually really enjoyed my 2 1/2 weeks in the hospital. I was pretty euphoric with the Prednisolone (corticosteroids can cause that or depression) and got a lot of really good work done on my web site. Came home and was weaned off the Prednisolone and emotionally crashed (which was caused because my adrenals were not producing any corticosteroids as my pituitary gland which monitors the production of it was seeing all the Prednisolone and was telling the Adrenals that none was needed). Recovered after 2 days but it did take me by surprise as I am normally very emotionally stable.
Since then I have been on Cyclosporine 100mg 2x per day, and the usual antibiotics, Acyclovir 400 mg 2x a day (an antiviral), Diflucan 50mg 1x a day(antifungal), Lanzoprazole 1x a day (anti-ulcer). I am not getting any side effects from any of the medication. I am also taking vitamins as I know antibiotics and the Cyclosporine deplete the vitamin/mineral levels causing physiological and mental problems which could be taken as being the side effects. I take 600 iu of Vit E, a B100 complex, 500 mg of Vit C each time I take my antibiotics (4x per day as I have read Vit C increases the effectiveness of antibiotics), Vit A/D 10,000iu . I am also taking Calmag to offset the possibilities of osteoarthritis along with Glucosimine Sulphate with Chronditin (needed to build up cartilage). I am taking Astragulus to build up stem cell population, zinc to enlarge and activate the thymus (training gland for the T lymphocytes) and Hunza apricot kernals (best source of Vitamin B17) to counter the cancer causing effects of the Cyclosporin and ALG. I have my nutritional studies info at my web site apart from the Vitamin B17.
No change in blood levels yet. This week I get back the results of a bone marrow aspiration and trephine I had done on December 17th. My Dr. had been talking about a BMT if the results are negative rather than another course of ALG as my sister & I are a perfect match. Fortunately I have 5 brothers & sisters and my sister Wendy & I are the only ones matching.
Overall, apart from the concern the AA condition has caused my wife & family, having the condition has been a very positive experience. I have become much closer to my wife, family & friends. I have realized I can either take on the beingness (wear the hat of) a victim or a solver of problems (as Bruce has done).
Deciding to do as much study on the subject as possible puts you in the beingness of a solver of problems rather than a victim of the problem. As a victim you are being an effect and as an effect will get ill easier and things hurt more as these are all experienced as an effect. When I am looking at my condition from the viewpoint of "these are the circumstances now...is there anything else I need to know before I decide where I am to go from here?" I find I feel more in control and bigger than my condition. There is a lot to know about the condition and you need to find out all you can so you can monitor the treatment you are getting. Just yesterday, after the first infusion of platelets, I had failed to stop the flow after the bag emptied and of cours |