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.

New Journey

I had my six-week follow-up and another bronchoscopy this week. No rejection. How lucky I feel. I'm still sore from surgery and I'm still weak but I get stronger every day. Despite that and the side effects from all the medications, I can do more now than I did this time last year.

I'm still trying to wrap my brain around everything that has happened and is happening to me--the illness, the surgery (and the world I lived  in while sedated and on narcotics in the ICU), the new lungs, my donor, my new life. Honestly, I feel a bit lost. I'm finding my way back to a world I was part of. But everything is different--my life, things around me, what I can and cannot do, my friends and family... and my perspective. Another paradigm shift. This time, so great that I'm overstimulated and overwhelmed.

Since returning home I've spent most afternoons on the phone with mail-order and specialty pharmacies, doctors, insurance companies, etc. We had to switch insurance plans (long story). It's nothing short of a headache trying to to get all the medicines I need for survival. When I'm not on the phone, I take pills. I realize it will get easier and things will resolve. It already feels wonderful--producing the oxygen my body needs--even though I haven't done anything overly significant lately. Oh, but I suppose I have. I survived the greatest battle I've ever faced in my life. And, my friends and family, I could not have done it without your help and to my donor and his family. 

I'll never be out of the woods. I'll always have restrictions of some sort. I'll always be on medicines. My immune system will always be compromised. I'll always have the burden of medical costs. I'll always be tethered to Cleveland Clinic. But that's okay. I've accepted that. So please, my friends, have patience with me as I start this new journey.

Two roads diverged in a yellow wood...

Two roads diverged in a yellow wood and neither will lead me out. One goes straight to the cemetery... so I am taking the other one. I will journey on as long as I can and hope for a successful surgery and a speedy recovery. Transplantation is not a cure. But if all goes well enough, it will give me the opportunity to live for several more years.

A few more years in these woods.

In an earlier post I mentioned the amazingly talented Charity Sunshine Tillemann Dick, who has had two double lung transplants. After her first double lung transplant she did everything asked of her. She took her medicines on time, avoided crowded spaces, and did everything suggested to reduce her risks of rejection and infection. But, when she went for a regular checkup, expecting a clean bill of health, she learned her body was rejecting her new lungs. She was angry. "I feel like I've done my time," she wrote in a blog post, "and I was looking forward to doing some more pleasant time in the the coming years."

Charity explained that even though we do something well or we get through something challenging, it doesn't mean the work ends or that there won't be other challenges. She continued, "While I might not be "out of the woods," there is more beauty and love inside of them than I could have ever anticipated." Charity is right. Even though the road has been pretty rough so far, I have learned so much and have met some wonderful people. And, since I will never be out of these proverbial woods, I won't mind setting up my abode here for the rest of my life. I'll have plenty of visitors and some great neighbors.

Optimism

There is something I wish I had right now. It is something I miss that so many take for granted. And, that is health.

I realize I will never be completely healthy again. So, I will happily take the only option left for me... a few additional years on recycled lungs.

To prove how optimistic I am, I bought myself a gift... a five year journal and a seven year pen.