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Old Thu Jun 9, 2016, 01:40 PM
PaulS PaulS is offline
Join Date: Sep 2014
Location: New York
Posts: 247
Hi Data - you are going through a very difficult time in the recovery process - it was for me - I really had to learn patience - recovery takes a long time and is not a straight line. As my doctor says you did the transplant to live - not just to be kept alive - but it will take some time - recognize the milestones along the way - you lived through the transplant - you got GVHD (which will help prevent relapse) under control - your numbers are pretty good. That's all awesome. Not everyone does so well.

What helped me was setting ambitious goals for myself - six months to be skiing - then take my wife to a beach - then go to my son's graduation. With each one accomplished I felt stronger and better - next goal is to climb Mt. Whitney (highest peak in the continental US) in September and summit on the anniversary of my transplant. It keeps me focussed and forces me to notice progress - and to appreciate the ability to do things I wouldn't have been able to do without the transplant. Tell people what you want to do - makes it harder for you to not achieve them - I really didn't feel like skiing at six months and was afraid of traveling - but I had to do it or I'd let myself and everyone down - and it was great that I went. Not sure I really want to climb Mt. Whitney - but I can't back out now...

Going into transplant feeling good I'm sure was a difficult decision - but the idea of two good years and then death is probably not necessarily what would have happened - I had one good year post diagnosis and then two of slow and steady decline - gradually losing the ability to do the things I loved - hiking, biking, skiing - all got harder and then impossible - I became transfusion dependent - going to an infusion center weekly - barely able to do anything - walking to the kitchen was a chore. A steady decline filled with despair and sadness. With high risk MDS I suspect the decline would have been faster and maybe more brutal.

You did the transplant to live - not just stay alive- you are near the bottom now and should start to get better and stronger - try and stay positive and focus on your goal of being cured and healthy - try not to focus on the things that can go wrong or have gone wrong.

I really suggest you set goals for yourself - when do you want to start riding a bike - take an extended bike ride? travel somewhere - do something fun and physical that you couldn't have done if you were a professional patient dying of MDS ?? Tell yourself and everyone else what you plan to do - maybe its a long fun bike ride -The transplant Is like a long ride with some serious uphills - but trust you will get to the top and how good that will feel.

Believe me I know what its like to worry and live with depression and despair - but try and stay positive and focused on being strong and healthy and the end of all this. Attitude is really important.

I'm thinking you don't really like pep talks - but there it is anyway!

Stay strong
Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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