How Are You?

My new lungs are pretty awesome. They've been thru a lot, and my immune system is doing it's very best to reject them, but they just keep on keeping on. This image is of my lung function over the past 4 1/2 years, from transplant to now.

Lots of stories in those dots. My early major acute rejection followed by a nice long era of improvement. Then we have the beginning of my chronic rejection, likely triggered by stomach contents getting into my lungs. A Nissen Fundoplication and lots of hard work by my team got that mostly stabilized. The chronic rejection continued to eat away at my lung function, so we decided to try a Thymoglobulin Treatment. That treatment got me stabilized for a nice period, until the upper lobe of my right lung collapsed. The collapsed lung seems to have triggered the progression of my chronic rejection again, Chronic rejection isn't something you can cure, it is just something that you can slow down or even pause for a bit if you are lucky.  I have been lucky.

I'm writing this post to answer the question "How are you doing" when asked by friends and family. When things are normal, I usually say "I'm doing well" or "I'm fine", and I mean it,  I feel that i am doing well, as a matter of fact, better than well.  I'm still alive and I'm feeling better that I did before my transplant. If I talk about my rejection, or how my meds are messing with the rest of my body, people feel sad or sorry for me. I want my friends and family to be happy that I'm still here and that I am doing well,  The rest of this stuff is just part of the package of accepting a lung transplant.  If you look at the numbers, about 40% of the people who were transplanted about the same time as I was have passed, and I'm still here.  Next weekend we are going to watch our granddaughter compete in a national Taekwondo tournament in Denver, then another granddaughter is going to stay a week with us.  Life is awesome.

UT Southwestern has been accepted to participate in a clinical trial involving using Extracorporeal Photopheresis to help slow the progression of one type of chronic rejection. My Team submitted me to be a part of this trial today. They tried to get this treatment for me awhile back, but Medicare would not cover it.  This trial to prove to Medicare that this treatment is helpful to lung transplant patients. If accepted, I'll be sure to post a lot about my experience.

So how am I doing?  I'm doing great :)  Yeah, my kidneys are having issues with all the meds (Stage 3 CKD) and my bones aren't what they used to be (Osteopenia on the verge of Osteoporosis). Lung function is trending down, but plenty of room to go before I start having 'real' issues :)  All stuff my Team and I are working on. 

How are you?