Living Well with a Bad Diagnosis - Lung Disease

Friday, June 12, 2015

Evaluation for Transplants

Lung transplants. No one wants them. They are a treatment not a cure for our lung diseases. As one person described the process to me: You are sick. Your lungs have a sudden crash. From that point forward, there is a small window of time to get evaluated for transplants before you are too ill to be transplanted. I have friends who have died during the evaluation process. I have a friend who died a year post-transplant. It is tricky.

My friend's husband, who had my disease, was not interested in a transplant when it was first mentioned to him. By the time he needed them, he was too sick to begin the evaluation. His wife just asked that I pass along to you, dear reader, that she so wishes that they had gone through the evaluation process earlier in the disease, even though he would have been rejected for being too healthy. She said that if you wait too long it can be fatal. She really feels that they were not guided properly by the doctors. It is a regret. They fought a long hard battle. Her husband's memorial service is this Saturday.

When Dr. K. first mentioned transplants, she told me I would have to lose weight to get between 25-30 BMI before I would even be allowed an appointment in the transplant clinic. I immediately rejected the whole idea of a transplant. No, thank you.

She looked into my eyes and said, "Sitting on a couch and needing 10 liters of oxygen is not living. With a transplant, you may have another five good years or even more. Educate yourself. Follow the process. When you are ill enough to actually need a transplant, you will have everything in place to make the final decision whether you want them or not."

I heeded her advice. I have made the decision that if I crash before I am 70-years old, I will go for one lung. If I can just stay stable for another eight years then crash, I will just let go and die.

If you are struggling with this decision, please be evaluated. Get the information. Learn the process. It may add active years to your life. Talk with your doctor. Here is a lot of information regarding the transplant process: HERE

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