Originally Posted by DanL
Hi Srbmsr90,
I am sorry about the diagnosis, but as others have mentioned you have one crucial element on your side: youth. Young people tend to respond to most treatments better than older patients, and depending on general overall health are better candidates for treatment and transplant due to fewer comorbidities. There is mixed evidence about treatment with ATG prior to transplant. The keys are that you find doctors you trust and get to know your possible hospitals, doctors, and nurses that would be taking care of you should transplant be necessary.
Most doctors follow a version of a risk/reward analysis to determine whether immediate transplant is preferred over more conservative and conventional treatment. Their goal, not to be morbid, is to maximize your lifespan with the greatest likelihood of longevity. I waited almost 4 years for my transplant for MDS because of this matrix, my relatively young age (I was 36 when diagnosed with MDS whereas the average age of diagnosis in the US is close to 70), and because I trusted the team of doctors and the fact that their average BMT nurse has 8 years of BMT experience. They are your front line of protection during transplant and and subsequent hospital stays.
You are blessed with an ideal donor and believe that you probably made the right choice. I am not a doctor, but I am a 7 year allo-transplant survivor who has experienced and lived through just about every complication a transplant patient can have, from GVHD to relapse, to sepsis several times, pneumonia 3 times, cdiff, VRE, cataracts, 3 joint replacements and a slew of others. I have been the luckiest unlucky patient, yet I stand because of the team of doctors and trust that it can and will all improve with time.
Transplant carries relatively high risk compared to ATG, and some patients go years or even decades without the need for additional treatment. Take your meds, as somebody else mentioned, come off of the immune suppressants slowly, ask lots and lots of questions, especially why are we doing it this way, and what are the risks of this way vs that. Report all side effects, no matter how insignificant they seem, and feel free to seek out alternatives if the side effects are too much to bear.
Trust yourself, keep all appointments, ask questions, find the best Dr and team for you, and good results should follow.
Sorry for the long post
Dan
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