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Double Lung Transplant?
A MyCOPDTeam Member asked a question 💭

Hello my name is Billy I am 51 years old from the gomery Texas I am stage 3 COPD what's 43%. My doctor thinks I should get a double lung transplant have any of y'all thought of getting a double lung transplant and what did y'all think about them?

posted July 11, 2020
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A MyCOPDTeam Member

Hi Billy. You may have clues on a recent blood lab results to explore more about the A1-A genetic condition. The amount af AAT protein may be listed there.
If you want to explore this condition deeper on your own, another site may also be helpful:
https://emedicine.medscape.com/article/295686-w...
OR to get free testing:
https://www.alphaid.com/en/hcp/alpha1-antitryps...
All the best.

posted July 12, 2020 (edited)
A MyCOPDTeam Member

Having a TX is currently the only known cure for COPD. Were that to be suggested to me, I would certainly consider the possibility. My first steps would be to review the TX centers that are fairly close to me and choose one where I could be evaluated to see if I'm a good candidate for the procedure. During the evaluation, you will be given many tests that you probably wouldn't otherwise have and will have the opportunity to learn a lot about your own disease, treatment plans and cutting edge practices for COPD, as well as social, emotional, family circle, financial and care requirements. If you're eligible, you'll be placed on a list. You will know enough at the end of the process to decide if this is something you want to do.

That said, my understanding is that in order to be placed on the list, you have to be determined to have less than two years to live. Unless there are many unknown circumstances that you're dealing with, it does not sound like you would be a listable candidate at this time.

Is your doc a pulmonologist? If not, I suggest you find a pulmonologist and ensure that you are getting the very best treatment possible. This should include good meds, daily exercise, weight control, pulmonary rehabilitation and education, flu and pneumonia shots, avoiding people with bugs and getting treatment ASAP if you do get something respiratory. There are a lot of things YOU can do to improve your situation. A TX may be in your future, but I suggest you get good treatment first.

posted July 11, 2020
A MyCOPDTeam Member

I am also an Alfa 1

posted July 12, 2020
A MyCOPDTeam Member

Have you been tested for Alpha-1 Anti-Trypsin Deficiency? It's a genetic deficiency that causes both liver and lung damage. Since your Mother also died of COPD, it's something that should be checked out. That's one of the first things I suspect would be done at a TX center. It makes a difference because the treatment is different. If you've been checked for that and you don't have it, I would ask if your pulmo has prescribed either roflumilast or azithromycin three times a week. Both have been clinically proven to reduce exacerbations and hospitalizations for people with COPD. Frequent exacerbations are definitely a concern, but there are ways to deal with them. I'm not trying to discourage you, but you have way more lung function and are in far better shape than most people who get listed, even with your frequent exacerbations. Just sayin........

posted July 11, 2020
A MyCOPDTeam Member

No I have not been tested for this should I ask my PCP on my pulmonologist for the test?

posted July 11, 2020

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