Why I Chose Not to Have a Lung Transplant
Last updated: February 2022
I have been quite happy with my general practitioner handling my COPD. On one visit he decided I should have a pulmonologist. He explained they keep up on new medicines and techniques, and with my severity, it might be a good idea. I love my doctor, but I begrudgingly agreed.
My first visit
Off I went to my first visit. I liked him well enough and pretty soon we were discussing my various options moving forward. First, we talked about lung volume reduction surgery. This is a procedure designed to help you breathe easier when your lungs have been damaged by severe COPD. The goal of the surgery is to remove the area of the lung most affected by the disease. This allows the lung to function more efficiently, and improve your ability and quality of life.1
We also discussed the Zephyr Endobronchial Valve System. This is an implantable bronchial valve used to reduce the over-inflation of the lungs due to severe emphysema. The device consists of a one-way duckbill valve attached to a nickel-titanium self-expanding retainer that is covered with a silicone membrane.2
After my doctor reviewed my recent X-rays and scans, I was told neither would be an option for me. The emphysema is fairly evenly spread out throughout my lungs, therefore there isn’t enough good lung available in one space. He said he felt I was a good candidate for a lung transplant and wanted to set up an appointment with one of the Boston, MA hospitals. This took me completely by surprise. I had not considered this option and what surprised me more, it upset me. I didn’t consider myself a transplant patient. My lack of knowledge concerning them led me to believe because I was only on 2 liters of oxygen and functioning around my home, I was not severe enough.
The interview appointment
Within a few months, I had an appointment with The Lung Center at Brigham and Women’s Hospital in Boston. First I had to complete another twenty-one sessions of pulmonary rehab and a more recent CT Scan to bring with me. The Center was impressive and I was put at ease immediately. My husband and I spoke with several doctors and watched a rather long video explaining what to expect. It was certainly an eye-opener. After much discussion, the doctors said they would continue working with me, but I had to lose sixty pounds. They also felt losing this weight will make a considerable difference with my breathing and a transplant may not be necessary then. So far I’ve lost ten pounds. It is coming off slow.
My next appointment was in three months. That gave me ample time to read over the large packet of information and make a decision. I think I already knew before leaving the hospital my decision, but it wasn’t final yet. I did a great deal of reading, research, and joined an online community with others considering a transplant or recipients.
About two weeks before my next appointment, I canceled it. I made the decision not to continue on with the process. Here are the reasons why:
Burden on others
It requires an incredible amount of help from other family members and/or friends during the recovery process, as well as being involved during the evaluation. Since each patient is very different, it is unknown just how long the recovery will take. There are routine visits to the hospital before and after the process. I no longer drive, so that burden is put on my husband or another family member. My son lives out of state, as do other family members. Friends that are close by are dealing with their own health issues. Beyond my own husband, I felt the time involved was a lot to ask. Each visit would probably be an all-day affair.
Fear of rejection
The fear of my body rejecting the lung is considerable, either immediately or down the road. I know there are medicines to help a patient through it, but I truly don’t know if I am willing to. Emotionally, I don’t deal with being ill very well. My two month hospital stay and long recovery took its toll on me mentally. At this time I am managing my COPD disease with the help of my husband. In many respects, it seemed like I would be trading one disease for another that required even more time and management.
Medication side effects
The possible side effects of all the medicines. Steroids are one of the medications and most of us that have had exacerbations know what steroids are like. Not only do they weaken the immune system, but the anti-rejection drugs may as well. Many recipients develop other issues, like kidney disease, diabetes, or an increased risk for cancer. Again, would I eventually be trading one disease for another?
My medical insurance would cover most, if not all the cost of the actual transplant. However, I know what insurance companies are like here in the United States. I have been on medicines for years and they suddenly decide to switch it to something else or not cover it. My doctor is very good at fighting them for me, but what if it doesn’t work? My husband and I are on Social Security and cannot afford the possibility of expensive medicines or co-pays.
Having a transplant is a very personal decision, and not one to be taken lightly. It is a long process, with a great deal of medical testing that is done before acceptance. For some people, their health has declined so much it is an easy decision. For others, their religion factors into it. At this moment, I am on 2 lpm of oxygen and life is manageable. I am working on losing the weight the specialists told me to. For now, I am at peace with my decision.
What are your thoughts on the subject? Would you get a lung transplant, or have you had conversations with your doctor about it?
Editor's Note: We are heartbroken to share that Carol passed away in February of 2022. Carol's storytelling and advocacy will be deeply missed, but her legacy lives on through her articles and in all the people she inspired.
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