Passing of time

I was surprised when a friend mentioned my long absence from this blog. So few people check it now for updates. Very few seem concerned with my trips to Cleveland and so much time has passed they’ve forgotten I’m still not out of the woods.

Several months have passed since I last posted. Since my last post several people in my support group have died, including my friend Janet from pulmonary rehab and Craig, who got his transplant only a couple months after I got mine. Their deaths forced me to reflect on the horrors transplant patients face. Many transplant recipients seem to possess an essence—a deep quality that is never afraid to take life by the horns. I think it may have something to do with being swept out of the arms of death and having that second chance. So it really sucks when these wonderful people fight with everything they’ve got for their second chance and then they die. Five years later. Three years later. Eighteen months later. One year later. Five months later. It’s never fair.

As I approach my fourth year anniversary I struggle with several health issues due to the surgeries and immunosuppressant medications, but I continue to be happy simply because I have escaped death. As I get closer to the four year mark, my transplant friends continue to die, and my body continues to hurt and fail me in little annoying ways. I am now in stage three chronic kidney disease, have joint pain, IBS, chronic migraines, and osteopenia. But I try not to complain. With all the hurt in the world right now, I always feel like I shouldn’t overshare my problems. I just continue to do what I can to reduce my risks on a daily basis, like wearing masks out in public and constant hand washing. I take my medications and listen to my body.

Each day I hold onto the hope that I will outlive the statistics. I am thankful for my donor and his family who gave me his lungs and the team who works so hard to keep me alive. Thank you to those who continue to walk beside me through it all. You are the best of friends.

Three years

I made it three years.

It was almost three years ago I woke up. I had to relearn how to walk and how to swallow.  I have a reminder--a six and a half inch scar from a sternotomy--a cut made down the middle of my chest, from the top of the sternum to the bottom. My heart was stopped and I was put on life support while surgeons removed my diseased lungs and replaced them with donor lungs.

I live each day with the statistics of lung transplantation hanging over my head. Many people tell me to ignore the statistics, but I will be honest with you. It's difficult when I deal with the physical and emotional pain of transplant. I have, since transplant lost friends waiting for transplant and I have lost friends who have received their transplant. How quickly one and two years go by and how many friends have died, either of rejection or infection or some other transplant related complication. Lungs are fragile and they don't last forever. Lungs are exposed to the outside air, pollen, pollution, germs, spores, and can suck up whatever is floating around. By one year doctors expect about twenty percent of us transplantees to die off. By five years, about forty to fifty, and by the tenth year, only about twenty-five percent will be going strong. And, all too often we deal with other health problems because of the effects from the medications we take.

Year three has been full of wonderful memories. I've been able to do much more than the second year, even with my limitations. This past year I've logged several health issues, a couple more surgeries, Gamma Knife radiation, several trips to Cleveland for follow-ups, many blood draws, and more. I keep photos of my donor on my shelves at home and can tell you that I sense that I am a whole lot happier than most people I meet on a daily basis, even on my toughest days.