Lung Transplant Questions Answered

My last appointment with the lung transplant clinic ended with the founder of the clinic telling me that I was stable and asking if I wanted to check-in with them once a year. Yes, please.

Then, I became involved with the young woman in Southern California waiting for a lung transplant for a year, who suddenly was hospitalized with a collapsed lung. After four weeks in the hospital, her lung was healing on its own and she was looking forward to going home to her young daughter and her supplemental oxygen, something she thought she never wanted to see again. She wanted her life back. A life outside of a hospital. The good news was that her transplant waiting list number zoomed to the top of the list because of the collapse lung. She was in critical mode. Plans had changed again when I spoke to her a few days ago. She was being transferred to another hospital where she was listed (she was double listed at two medical centers), where they told her that she was at the top of their list and she should get her new lungs soon. All good news.

Around the same time I was speaking with her, the head coordinator at the lung transplant clinic phoned and left a message on my cell phone. We had developed a personal relationship so she phoned to just confirm my agreement not to be seen in the clinic for a year. It was in her tone that I had the feeling she was trying to tell me something. I returned her call and asked to have a conversation.

She phoned a couple of days ago. I told her of the journey of the young woman in Southern California and was wondering if I was being foolish not being seen in the clinic but once a year and maybe would miss my chance to get lungs if I suddenly crashed. Should I continue to be seen in the clinic every 3-6 months and have all the tests towards being listed? As I am functioning, I would have a big number on the list but I would be on the list. I asked if not being seen in the clinic more often would put getting new lungs in jeopardy?

There was an interesting reply. Since I am stable, they would continue to do the tests but if I were to suddenly crash, I would need to re-do all those tests. Being seen just once a year would make no difference in the long term. She said that I am now under their roof. I have a home with them, even though I am not being seen often. I would not have to start all over again if I suddenly needed to fast track lung transplants.

She then made a deal with me. If anytime in the next year I needed more that 2 liters of oxygen during exertion or if I needed any supplemental oxygen during rest, I am to phone her on her private number. At that time, she would review any latest tests I had taken through Dr. K. then order new PFTs. The process will begin from there.

I finally feel like I know what to look for before contacting the clinic. The question at that time will be whether my downturn is due to a virus, infection or a downward march of the disease.

Bottom line? I will not have to start from the beginning again. I won't have to take tests that I will be needed to be taken again if I begin to crash. I know specifically what to look for before contacting the clinic. All in all, I am really grateful for her time and conversation.