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Old Sat Feb 27, 2016, 12:54 PM
PaulS PaulS is offline
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Join Date: Sep 2014
Location: New York
Posts: 247
Hi Data - The statistics for transplant success, even under the best of circumstances, are daunting. For sure, you have a lot going against you that is out of your control - what's important at this point is recognizing what is within your control to help you end up on the right side of the curve - From my experience, and perhaps the best advice I had going in - was to believe you will be able to overcome any setback - believe you will be cured. Attitude is important - replace fear with determination and faith. The mind plays a big role in our health and recovery.

There are other things you can do to improve your odds - make sure you keep moving, exercise as much as you can - keep eating, keep hydrated, wash your hands and teeth, and maintain a clean environment before, take precautions, limit guest visits etc - during and after transplant - People die who stay in bed, don't eat, get infections - That won't be you.

Also - keep an attitude of determination, gratitude and love - a positive attitude greatly improves your ability to heal and overcome - you are loved and have a lot to live for - that too improves your odds - people are more likely to die if their angry, alone and filled with despair. That's not you.

Last bit of unsolicited advice - keep a goal - you don't want to go on one last bike ride - you want to be strong and go on many bike rides after you are cured. I'd set a goal for a good bike ride six months post transplant - start training for it as soon as you get in the hospital - make it an ambitious goal.

I told everyone my goal was to be skiing in Colorado in March - I told my transplant doctor and he said maybe next year - I said, no this March. I started walking and exercising upon admission and as much as I could during my stay - Inspired by Bailie, I ended up walking five miles around the hallway - but started with getting out of bed - breathing and moving my legs around. PT would come in to assess me and ask if I could stand up - I stood up and said the goal is to be skiing in March - then tried to out walk them in the hall - yes I'm very competitive - I believe this attitude helped keep me going, moving and positively focussed - and helped manage my health care providers expectations - even when things weren't so good - and there will be those times. While I am far from being able to declare myself cured - and I do have moments of despair - I feel that outcome is still within my grasp.

Don't let the odds scare you - believe you will be the guy who will be cured - really cured. Let your doctor know your expectations - odds are bad doc - but I'm gonna be the guy on the far side of the curve. Replace fear with determination and faith.

To paraphrase my transplant doctor - you are doing this so you can live - not just to keep you alive.

So - I'm expecting to hear about your epic bike ride sometime late summer.

All the best,
P.
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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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