The List

I'm part of a support group of over 1,400 people who are in different stages of lung transplantation. While a handful are caregivers or spouses, most are either waiting for lungs or have had a lung transplant. Last night, after spending some time on the support group page, I realized that in my last post, I may have made it sound like transplantation was an easy decision. I want to clarify... it isn't. It's terrifying. But, when the other option is death, it makes it seem easier. I also want to point out how fortunate I am to have the opportunity to make that decision because it's not offered to everyone who needs a transplant. There are plenty of people on the support group who are struggling to get listed.

Getting on the list is a chore and a privilege. Organs are in great need and approximately eighteen people on the list die each day waiting. These are people who were chosen to be good candidates and have completed all of the tests required to be able to be listed. That doesn't include the people who have been turned down, or are struggling to get listed by changing their lifestyle, their habits, trying to gain weight or lose weight, fix dental problems, etc.

Each transplant center is different. I can only tell you my experience, based on my doctors and my center. My center won't list one until they are close to death. But, they also know they have to list one before they are too ill. They have gotten pretty good at determining this window of opportunity. And, this is my window of opportunity. I'm sick enough to be listed but well enough to survive surgery.

Knowing I'd need a transplant, we started with the prerequisite checklist at a slow pace and worked our way through it... ticking off each test or requirement. One by one--lots and lots of blood-work; regular pulmonary testing; dental clearance; allergy testing; tissue typing; updated vaccines including the entire Hepatitis A and B series; updated and current annual exams; bone density scans; heart cath; and tests like gastric emptying, which involved a series of scans after eating radioactive eggs. (Ick!) They also require a psychological evaluation. The tests are daunting and the older one is, the more tests seem to be required. And, if, like in my case with allergies, if one test has some irregularities, there are additional tests scheduled to rule out other things. And, of course, the checklist includes approval from the insurance or some other guarantee that they will be getting money for all of this.

Once these requirements are met, one's case is discussed by all the doctors, the surgeons, and the social worker. At that point, if it is determined one will be a good candidate, a Lung Allocation Score is assigned and one's information is sent in for the list. All of one's information is entered into a database so that when an organ becomes available, the database is searched for the best matches.

Matches are based on several things--blood type, antigens, antibodies, proximity to regional center, body size and more. There is no guarantee. For some individuals, matches are harder to find. Even if one is first in line for an organ at their center or region, if the organ doesn't match well, it will be offered to the next in line... someone who is a better match. It's a system that assures people will get the best new start with a recycled organ.

It all seems complex, but it's a system that works as well as it can with a shortage of organs. It doesn't have to be this way. If more people were aware of the impact of organ donation, those eighteen people would not be dying each day. Instead, they would be given an opportunity to live longer, to be with their children, their grandchildren, their spouses. A mother and father would cry with happiness, friends would rejoice, and a community would be overjoyed. Someone, someone like me, would breathe again. She would be able to be a mom and wife again. She would be most grateful to her donor for that final gift of love... the last gift any person can give.