CF Awareness Month: Cure? and transplant

There is no cure for CF. There has been leaps and bounds in research for medicines to help treat CF. They have made headway in research for a cure but nothing solid. The saying, “the cure is right around the corner!” has been around for many many years. My parents heard it when I was diagnosed 34 years ago and “they” (CFF, docs, etc.) are still saying it today. With that said, we are closer to a cure than we were 34 years ago. I don’t think I will see a cure in my lifetime but who knows, someone may surprise me with that. If I can live my life as an example and do my part for research then that is all that matters for the generations behind me. They are doing research with stem cells in hopes of helping correct the defective CF gene, which is promising.

Now onto transplant. Having a lung transplant doesn’t mean you are cured from CF. The implanted lungs don’t have the CF genes but the rest of the body still does. You are by no means “cured” from CF. What you do have, in a successful transplant, is healthy lungs in your CF body in which you have to take anti-rejection drugs to make your body not reject them as a foreign object in your body. You do trade one set of issues for another when having a transplant. You now have to focus on keeping those new lungs good and healthy by taking all your meds, which there are a lot of them. You trade breathing treatments and airway clearance for an anti-rejection regimen. That’s not to say you will never do another breathing treatment in your life because that is not always the case. Lung infections can still happen. Lung transplant is only an option when your lung function is low enough to qualify but when you are still healthy enough to endure the long surgery and recovery. In most CF centers evaluation for lung transplant can begin when you are around 35% lung function. There are a series of tests that are done to see if you qualify. When you qualify you are put on the list and wait for the call for lung lungs. There are some people who don’t want to go down the transplant route and some that do. It is a personal decision. There are living lobe donors, where part of one living persons lung is transplanted into the person with CF. There is also deceased lung donation. Survival rates after transplant have increased significantly over the years. No one knows how long you will be around after transplant. For some it could be 5, 10, 15, 20+ years. Others it could be months, you just never know in regards to rejection and complications.

With all that said, when the time comes for me to decide if I want to take transplant journey I will skip my happy little butt to the hospital and do all the testing required so I can be listed. If it means that I can have another 5 years with my family I am all for it. Have I mentioned that I am stubborn? Well, I’m not going down without a fight and with all resources exhausted.

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