A DOUBLE WHAMMY

Those who know me well know that my glass is nearly always half-full. My theory of life is that if something bad happens, take time to grieve and then get on with you life. Even though you may not always see it at first, there’s usually another road to take and that road may even be better than the one you were originally on.

So it should not be surprising that not long after Gordon’s death, I convinced myself that, with Gordon gone, I would now get a lung transplant. And that lung transplant would lead to a whole new life, and so on, and so forth.

That positive thinking really helped me for a while. It gave me the necessary motivation to recover, to get my strength back and to get back on the transplant list. Three days a week for about six weeks I worked with a physical therapist and in between I exercised by myself.

My first big test was on Friday, July 5, when I went to the pulmonary rehabilitation center at our local hospital to do a 6-minute walk. In order to get on the list, or in my case to get back on the list after my hospitalization, you have to be able to walk 500 feet or more in six minutes. On that day I walked 800 feet!

My first visit to the Brigham and Women’s Transplant Center after Gordon’s death was on Wednesday, July 10. Coincidentally, that day I’d been scheduled to meet with Dr. Goldberg, the Transplant Program Director. After first examining me and asking me a series of questions, she said we were all set for another few months unless I had any questions.

And then it happened! I opened my mouth and asked Dr. Goldberg what priority I had on the transplant list. Her answer was, “No priority.”

Somehow I’d always known it, but it had never been spoken of so directly. In comparison to persons with every other lung disease, research shows that those of us with COPD, Alpha-1 and not, live longer pre-transplant. And that research is the rationale behind the 2005 UNOS lung transplant guidelines. Everything else being equal, UNOS guidelines give priority to those with all other lung diseases over someone with Alpha-1 or COPD.

For those of you who don’t know, UNOS is the United Network of Organ Sharing and it sets the guidelines for all lung transplants within the United States. In other words, UNOS sets the rules as to who get a transplant and who doesn’t and Brigham and Women’s Lung Transplant Program and Dr. Goldberg merely follow them.

Put simply, because I’d asked the question directly, Dr. Goldberg gave me the only answer she could. Only two things could help me get a lung transplant; getting much sicker or sheer luck. Sheer luck is usually when someone above you on the list gets a single lung transplant and you get the other single. But according to Dr. Goldberg, as of right now they weren’t willing to give me a single because in addition to COPD, I also had Bronchiectasis.  

Desperate, I now asked, “But what about survival? Isn’t expected survival supposed to be part of the equation, not just how soon you will die?” Yes, Dr. Goldberg replied, survival is part of the equation. But then she said that other research showed that Alphas post-transplant survival statistics were not any better than those of any other lung disease. Boldly, I told her that I’d recently read about a study that said it was and she asked me to share it with her if I could find it.

Thankfully, my daughter, Maura, and my stepdaughter, Rebecca, were with me that day. As soon as my appointment was over, we left to get a bit of lunch even though I wasn’t sure I could eat. I was so anxious I was literally shaking. An earthquake had shattered my glass half-full.

It was now a month since Gordon’s death and I had no game plan. But those who know me well know that I can’t live long without a game plan. So while we were having lunch, I made a new game plan. I’d buy a Tempur-Pedic adjustable bed. I’d sleep better; ergo I’d feel better.