We Tried For a Transplant
In the first few years after my mother’s COPD diagnosis, I spent countless hours researching the disease. The big thing that kept showing up was: “There is no cure.” Those words are so dark, aren’t they?
I did find a few blogs back then (around 1999) that were basically online journals. There was one in particular. It was a man with COPD. He had decided to pursue a transplant, and it was a success. I remember getting so excited about this idea. I talked to mom about it the next time that I saw her. However, she did not share my excitement.
When I was very little my mom had several surgeries that were almost as in depth as a transplant. She was cut completely open twice, and had a few other surgeries with shorter incisions. She was not excited about doing it all again. We talked about the advantages of a transplant, and we talked about the disadvantages.
Mom side-stepped the transplant talk for about eleven years. Her doctor had mentioned it several times through the years, but did not try to pressure her into it. It was 2009. She was in stage 4, and I had just experienced a miscarriage. I remember taking mom to the doctor, and she asked her if she was still possibly a candidate. I was so excited. I think her doctor was just as shocked as I was. Everything leading up to this moment had been pointing us away from a transplant.
Her doctor reviewed her case again, and decided that she still had a chance. She was on the edge of the the age cut off for Duke University, so we had to move quickly. (Duke no longer has an age limit, as long as you meet all of the other requirements.1) Her information was sent to the team, and while I was far away from home for work, she called to let me know that she had been denied. We were so disappointed.
A few months later, she received a letter in the mail from Duke. They had decided to review her case again, and she was accepted. Talk about a roller coaster of emotions!
At the consultation, we were given all of the reasons not to proceed. There were many different things that she would need to consider. The surgery itself is intense. The recovery process is nothing to take lightly, and the amount of medications that she would be on would be incredible. There is no guarantee that a transplant will work, and the medications needed to keep your body from rejecting the lung(s) may cause other problems.
They also explained the condition that she would need to be in before the surgery. There was a minimum that she would have to be able to walk. It was something like 1000 feet in 6 minutes, I think. She could do this with her oxygen turned up, so it was indeed doable. She was ready, and we were scheduled to return for the two week evaluation.
We learned about the financial commitment, and I began fund raising. I knew that nothing, so far, was out of reach. We could figure it out. We were getting more and more excited about the possibility that she might be able to breathe.
During week one, she completed more tests than I could possibly explain. It was incredible. During the second week, we spoke to the different doctors that would be in charge of her care, and each one was giving her a green light for the surgery. I cannot explain how excited we were.
Then on the last day of testing, the very last test revealed that mom had had multiple strokes. She was denied a transplant because they felt that she might not make it through the surgery. We knew that mom had a stroke when I was 14, and we had reported this to Duke. We did not know that she’d had multiple strokes.
We were definitely crushed. It was a very sad time, but after the dust settled from all of this, mom lived 5 more years. We will never know what her life might have been like with a transplant, but I can tell you that there is too much life to live to let disappointment keep you down. She pushed through it all and found ways to enjoy the two grandchildren and one great grandchild that were added to the family. If she could, she would tell you to keep living, no matter what life throws at you.
Do you have questions about your COPD diagnosis?