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Hi all
Hi all my name is Scott
I had Aplastic Anemia and went thru the ATG serum which didnt work. The dr.'s at Dana Farber in Boston could not find a match so they used Umbilicol chord stem cells for my transplant. I kept a Blog of my time battling this disease. It was 1 year November 30th 2007 and except for some GVH on my skin that flares up from time to time i feel good. I do have iron overload it's 2600 now i give blood twice a week to get it down and ive talked to my Dr. about xjade which i will get when i see him. This journey is a tough one to go thru I wish everyone the best in dealing with your disease you are stronger than you think. Please check out my blog http://scorp37.wordpress.com/page/2/ if you have any questions please ask Scott Last edited by scorp37 : Fri Dec 21, 2007 at 10:47 PM. |
#2
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Hi and welcome, Scott.
I hope people will check out your blog, because you talk about aspects of a transplant that many of us experience, such as looking forward to the first day you don't have to wear a mask. You might want to post in the Cord blood transplant info? thread by the forum member named Martha M. |
#3
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Hi Neil thankyou i will I'm glad to see sites like yours because it helps to educate people on what to expect and have or will go thru. When i was told i had aplastic anemia and a transplant might be the only option i asked a lot of people in Dana Farbers waiting room who were wearing masks and gloves when they had the transplant and how they were doing. The wealth of imformation i got from people that had gone thru transplantation was huge. I did not feel alone and was able to prepare myself for it by seeing them from just getting out of the hospital to 1 year 7years and a woman who had hers 22 years ago. I saw the up's and downs and it helped me get ready and know what to expect. My wish for you and all the people that come here is the fastest recovery and a return to "almost normal" life.
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#4
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Quote:
As we were doing that one day, we heard the woman in front of us in line ask for a return appointment "a year from now." Our eyebrows went up and we looked at each other. A year!? It was hard to imagine being well enough to go that long without a checkup, but eventually our appointment intervals increased. We cheered the first time we were able to go a month between hospital visits, and today we go to checkups only a few times a year. Like that woman in the appointment line, we can now help others envision their own better futures. |
#5
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I know that schedule 3 times a week then twice a week then when they say once a month your so happy now it,s once every 2 months. And these trips to the Dr's involve everyones familys.
Someone has to take you until you can drive for yourself but i found my wife got used to going in and seeing the people we met while there so she goes in whenever i go. Our familys go thru this with us sacrifice their time and make sure your O.K They deserve a huge THANKYOU from every patient. I know they do it because they love you but it can be trying sometimes like those 1 oclock at night emergency room runs because you have a fever on a sunday with work in the morning for them. To all familys out there Thankyou for loving us so much. |
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