Ok,
So here is the deal. I realized I need to really keep things in perspective and stay positive. Before transplant I was headed and was only going to head in one direction. Downhill, and I was heading there quickly. The old saying is you trade one disease for another one. Ie. Cystic Fibrosis, for post-transplant CF. The good news is this new condition has the potential for upward direction. Alot of upward direction, but you are going to have to manage the condition and it's bumps.
That is what is going on with me. Yes, I was doing better 3 weeks ago, but still am doing very well. This infection is treatable and I can still breathe better then I have in perhaps 10 years. I sleep well at night, take walks, exercise, etc. And the potential for that upward progression is visible.
We have the green light to go home for thanksgiving and still am on pace to be done with Chapel Hill in mid-December and return home. I was also told I can eat basically all foods now... That means, Yes Aunt-Harriet, I can have the fruit salad!
Hope Everyone has a great Thanksgiving.
-Mitch
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7 comments:
Happy Thanksgiving. Enjoy the time at home!
Mary
Hi Mitch!
So I was directed to your blog after Rich Mattingly told my parents and me about your exhaustive research on transplant centers. I'm listed (and near the top) at Columbia Presbyterian in New York City. Congrats on your transplant and good luck fighting the infection. Hope that you're feeling amazing again soon!
Take care,
Piper
Hi Mitch,
I know what you mean - I struggle with the side effects of all the drugs and the ever changing levels of the Cyclosporin, but none of it is as bad as the pre-Tx CF. We lived with this scary idea of transplant on the horizon as the 'end game' of CF and now that scary monster is in the past we've got to hold on to the idea that things will get better. My doctor says people only really start to feel human at 6 months... Good luck and keep on fighting.
Hi Mitch - Have a wonderful time back home. Thanksgiving is a great time to share dinner with people we love and feel thankful for all the joy and shared memories we have with the people around the table. Hope your dinner is delicious to you. We will for sure raise a toast to you, Rebecca, Simon and Matias, Gail and Bill, Harriet and family and to all your hard work while you get to know your new lungs. Happy Thanksgiving!! xoxoxo love joan, roger, ann and scott.
Mitch, that fruit salad sounds awesome!!Have fun at home with family and happy thanksgiving !! Love Jean
Mitch, We're happy that you can go home for the holiday! Enjoy the family time. Brian and Steve are always asking for you, keep up with your journey and send good wishes.
Hope the love sent by all of us helps you to maintain your inner strength! Love, Lynn
Hey Mitch! I just found where to post a comment at. lol Im enjoying your blog. Sorry to hear about the infection but it seems like they are taking good care of you and are on the ball. I'm getting out of the hospital tomorrow. I was in for 3 days getting IV steriods for mild rejection. But have felt fine the whole time. Who knew? lol Are you going to Sweet Melissa?
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