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Old Thu Jun 9, 2016, 03:50 AM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 587

I am sorry about the trials that you are facing. I had BK for several months which wasn't pleasant. I have been fortunate enough to avoid CMV thus far, but from what I hear, it is exceptionally common in MDS patients, and from what I read, about 62% of the population tests CMV positive by the age of 50 - meaning that they have CMV antibodies present.

Try to stay positive. It is said that the night is darkest just before the sun rises. I am about 27 months since transplant. I have relapsed, had acute and chronic GVHD, had 1 hip replaced and will do the other one next month due to avascular necrosis - shoulder will probably follow. I have had cataract surgery on the left eye, the right eye is next week. I was hospitalized for 85 or so days last year after not being hospitalized for a single day during the first year after transplant. I had PCP (pneumocystis pneumonia) cellulitis, random infections, and was put on so much oxycontin and oxycodone, that I was told that most elephants would not survive the dosage.

My point here is that transplant can be a rough process. My circumstances are admittedly different than yours, but there is not a day that I regret my decision to have the transplant, and there is not a day that I wake up that I am unable to appreciate the opportunity to live that I have been given.

Know that you are going to get through the difficulty and that you are going to live out a strong healthy life when you are done. Do the best that you can each day, accept the limitations that you have for now, push the boundaries as far as you can without putting yourself in danger.

Please know that my intent is not to be preachy, but to hopefully provide some encouragement during the challenges you face. You can win each day, and sometimes that means getting out of bed, enjoying breakfast or lunch (depending on when you woke up) and then watching some tv, hopefully laughing a bit. Other days you make it to the gym, exercise, sweat a bit, and then go golfing afterwards.

You can do this and make the disease sorry that it picked you to torment.

MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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