Aplastic anemia

From: Candace
Email: dacagreens@cs.com
Date: 5/17/2001
Time: 5:44:59 PM
Remote Name: 152.163.207.57

Comments

My husband was diagnosed in the fall of 95. He had been having nose bleeds a lot but we figured he was fine. His dad said to take iron pills...so he did. He threw up right away. The blood vessels in his eyes burst and the white of his eyes were red. He went to the Dr. and they sent him right to the hosp. The Dr.said for me to drive and to be very careful because if we had an accident he would probably bleed to death. They took bone marrow and found out what he had. We are in Oregon so they sent him to OHSU Oregon Health and Sciences Center. We had to move to Utah for bone marrow transplant. We got there and his counts were so low they were almost non existant.(some of you know about that i'm sure) Well he went through it all only to find out the day before the BMT that his counts were high wnough to where they would'nt transplant. So we packed up and moved back home. That was a blessing though because they gave him a 50 % chance of dying from the BMT. He was on a rip roaring dose of steriods and cyclosporine along with drugs to fight the affects of the drugs you know. In the meantime he has been in the hosp. a lot fot doses of the ATG stuff. He has done that twice but neither times took. He also went on GMCSF an injection given twice to three times a week at home. That is a growth factor. He is on clycosporine now and as been since 95. The Dr. still holds a BMT as a possibility. Although it is much safer now and we could have it done at OHSU. His brother and sister do not match him so they have to go through the registry to find donors. It is such an emotional thing to go through. David will be 37 this year but he often says he feels like he has the body of an old man. We have 5 children that he lives for. Two of our kids we had after they told us the drugs would affect him so that we could'nt have any more. There have been times when I have felt like "stop the world I want to get off" but you just keep going. Aplastic anemia doesn't run our lives like it used to. We go and do whatever we can and just take his pills with us. We know though, that if he gets sick it won't be a 4-5 day thing, but usually a 1-2 month thing.Anyway thanks for letting me share. It is great to know that other people are living with this too. Candace