|“At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.”|
At this 10 month mark I can not express enough my gratitude to my donor and his family for that spark I needed to light my fire again. I spoke at the CF walk yesterday, which coincided with my 10 month anniversary of new lungs. It was a perfect day and we had a good turnout. I encouraged everyone that with the current research going on today with CF, that children born with the disease today or even those young still will have a treatment that prevents them from needing a lung transplant and more importantly allows them to breathe normally. I actually think that this is possible in the future. Whether it be 2 years, 5, or 20. It will happen. There are just too many advancements being made and too many amazing people working on it. So, thanks to everyone for your continued support.
Here is a photo from the walk yesterday of my good friend Jess Gordon who I met in Nursery School!-
photo by Matias Greenberg
Sunday, May 22, 2011
A little spark...
Yesterday was the 10 month mark since my transplant! Wow, I can not believe how time has been evaporating. As usual, I have been meaning to provide an update on things and I end up getting lost in life. Even with a trail of breadcrumbs, finding my way back to this blog has been difficult lately. Perhaps that is a good thing. I continue to feel incredible. However, I should back up a month or so and fill you in on the medical side of things.
I went to Chapel Hill about 4 weeks ago for my 9 month check-up and bronchoscopy. I had an ever tiny cough that would present itself once a day, or even every other day. Not much right? Back to the pre-tx days if I only coughed one time a day people would have thought I was cured. I was coughing thousands of times by noon. Well, the results of the bronch actually showed that I had a very tiny RSV cold in my lungs and also had minor A1 rejection. This is acute rejection. It was not the best news, but not terrible by any means. The virus was treated with a 10 day course of anti-viral. Then I was put on a 2 week bump in my prednisone (steroid therapy) to treat the minor acute rejection. An episode of acute rejection is not uncommon in the first year or two after tx. This was my first indication and it was the lowest grade possible. My breathing tests remained unchanged at 70%! And despite the tiny cough I felt great. Fast forward to today. Cough is gone. Prednisone treatment is over. I feel fine. I return to Chapel Hill this week for them to do another bronch and see if everything is resolved from a pathology standpoint.
Now the good news. I continue to amaze myself every week on what I am able to do again. I have gained 24 pounds since my low-point after my second transplant. I have been going to the gym (not quite regularly), I have been playing tennis which is an amazing workout, helping coach the boys baseball team, and even started to play Adult softball again! First game tonight, lets see how that goes. My energy level allows me to do whatever I want. I don't shy away from any activities anymore. Whether it is simple things like going for a walk or being that Dad at the birthday parties who stays and plays with all the kids. It is all fun for me again. The boys went to a birthday party the other week and at the end I was in there playing kick-ball with them and running the bases, chasing down little 7 year olds and laughing. Other parents commented to me that it looked like I was having as much fun as the kids. Guess what? I was having more fun then them! It has just been too long since doing physical activity was a chore, a struggle like I was suffocating, and a disappointment, now it is a gift.
Now here is a photo of our 7 year old boys! Who would have ever thought this was possible back in nursery school!