[PaulS]

Hi Forum -

It's been a little over six months since my transplant for MDS and figured it was time for an update - I hope my experiences are useful for those undergoing or contemplating a transplant - and I thank the forum for much great advice and encouragement. I'll summarize briefly -

After nearly three years of watching and waiting - I became transfusion dependent - EPO didn't work - Vidaza didn't work - My Hgb would drop into the 7's without a transfusion - and got as low as 5 - platelets also started dropping - especially after Vidaza - but they were low before. Finally blasts started showing up in the marrow - maybe as high as 8% but probably much lower - a troubling mutation also showed up in my cytogenetics - although it disappeared in a BMB closer to transplant. At that point we decided it was time to transplant. A MUD was found and the transplant process started.

Pre-transplant screening showed some coronary artery disease and pulmonary hypertension - the former was addressed with a stent - the later was likely associated with a build up of fluids due to frequent transfusions -

As a result of the heart issues - they did non-myloablative conditioning w/o TCell depletion - Chemo and transplant were going smoothly when I got an infection in the hospital - ended up a couple of scary days in the ICU but recovered fairly quickly - from that point on it was a lot of waiting for my counts to go up - which took a very long time. Five weeks in the hospital and I finally left for an apartment near the transplant center - Counts took a long time to rise - and around 100 days GVHD showed up with a rash all over my body - and itchy red, swollen face. Mega dose of prednisone cleared it up somewhat - stopped the itching - but created a new set of problems - high blood pressure, diabetes, wasting muscles - Reached a stalemate - GVHD stable but not gone, counts still low (platelets 20's), taking too much prednisone -

Next tried Rituxin to get rid of the GVHD - four cycles and it worked! GVHD mostly gone - and they began to wean me from prednisone - counts started to rise. During this time - maybe 3-4 months - I was getting frequent RBC transfusions and occasional platelets - as well as IVIG. Had my central catheter in all that time - very unpleasant.

Finally the counts started to rise - didn't need transfusions, started to wean from prednisone and mychophenolate - lost the catheter - which made a huge difference in the quality of life and ability to exercise.

In February - around five months - my BMB showed 100% donor and no sign of disease or cytogenetic abnormalities - big milestone and very exciting news. My pulmonary hypertension disappeared. Counts continued to rise Platelets got to 75, WBC normal Hgb creeping up over 11 -- as a result I was able to achieve my goal going into transplant - going skiing in Colorado - I boarded the plane six months to the day post transplant - and slowly got back into skiing - a sport I love - Started slow - but by my seventh day of skiing bumps and really doing pretty well - felt great - almost normal. Sometimes I didn't think about my transplant at all.

I'm back from Colorado and my HgB is 13.5 - the first time I've hit normal in maybe five years! Platelets still low - in the 60's last time. My liver enzymes are slightly elevated and I have residual GVHD on my skin - little freckles and a red face - not too bad but as a result we are weaning from prednisone and MMF slowly - I'll probably be on tachrilimus for a while - but my goal is to be free from all those drugs eventually. I also need IVIG as my IG levels are all low. I'm gradually getting stronger and regaining my energy.

The transplant experience has been remarkable - I'm so grateful and humbled by the kindness and grace I have received - starting with my amazing donor - my awesome doctors, nurses and other health care providers - and especially my wife and family - People on this Board have also been very helpful and supportive - I especially miss Tracey as I write this - and am thinking of Data as he starts his transplant journey. Overall, I feel very blessed and grateful.

I still have a long journey ahead of me -

For those contemplating transplants now - there are a lot of scary stories out there - but a lot of positive ones too. Focus on the positive ones. Some lessons learned - Stay positive and stay grateful - attitude is very important. Don't be afraid, we all die sometime and we don't really control when or how, fear just gets in the way. There is power in faith and prayer. Keep moving. Enjoy taking showers.

Thanks again to everyone on the forum who have been rooting for me and offering great advise and insight.

Best to everyone
Paul