I had a double lung transplant. Everything is good. Lots of different stuff happening, but just about 3 years extra I was given. Don't listen to negative people like the one who said that 1 in 2 survive? That's a laugh. In November 2021 that month had i believe 18 surgeries that everyone survived and was during Covid.
Keep smiling humor is most important. Also felt great to have no tanks to lug around. Keep the faith Darlin, it will get better!

Believe what you wish, @A MyCOPDTeam Member, but facts don’t lie.

As for the rest of us, if you haven’t already come to terms with the crazy medical options that exist for folks who never give up and who can afford to pay for their care, my final question to them is: “Where do you want to spend your final hours?”

In my case, it’s not fighting simply to live, while all joy and finances have been drained from my life in pursuit of a few more days on earth, recovering or in fear of dying.

I highly recommend this book, “Being Mortal”, so that you can decide what sort of final years you may have, based on the choices we each make.

The only things I know are:

- No one lives forever, regardless of what care they can afford
- Quality of life and independence are everything
- None of us are getting out alive, LOL

Happy Friday night, 26-JUL-24

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Hi, @A MyCOPDTeam Member - my doc wants me to get a lung transplant and I keep saying, “No, it’s not for me.”

Mine is a birth defect, and I’m tired of fighting.
I’m allergic to or sensitive to most medications, so anti-rejection drugs are not for me.
Costs. Anti-rejection drugs and follow-up care is expensive, so not for me.

In general, you are only as good as your overall health or weaknesses, your willingness to fight, and your ability to afford to fight.

@A MyCOPDTeam Member is right, that - if you qualify before you age out - it can give you more years than you ever expected. But, @A MyCOPDTeam Member is also right - average survival longer than 5 years post-surgery is still about 50%.

In my case, the doc has been pushing lung transplants since at least 1992, but certainly since I went on disability in 2015, and my answer is, “No.”

Because it’s a loaded question, none of us are qualified to help you on this part of your journey. You’ve got to go through lots of tests to figure out if you can survive the surgery, as well as figure out if your age and finances will qualify you for a single or double lung transplant given any other co-morbidities you may have which will impact your health post surgery, as well as survival rates.

Given the limited number of lungs available for transplant, and the fact that they usually go to people with enough finances or fundraising ability, as well as prioritizing younger people as recipients, if you’re going to pursue this option, you need to do it sooner rather than later.

I think @A MyCOPDTeam Member has been pursuing this option for a few years. Carol, do you have anything you wish to add? Did I get anything wrong in my summary of USA-based healthcare options and your experience for trying to qualify?

Clearly, where one lives for nationalized healthcare (outside the USA) vs employer-based care for most folks in the USA, has a huge impact on the outcome of one’s options.

REF: https://www.verywellhealth.com/lung-transplant-...

Good luck. I hope I gave you accurate information to start your own research with the help of your pulmonologist.

Monday, 22-JUL-24

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Lung Transplant Survival Rate and Life Expectancy

https://www.verywellhealth.com/lung-transplant-survival-rate-5443254

@A MyCOPDTeam Member, it has nothing to do with being at death’s door. Rather, it talks about aging and choosing how to live, knowing that age and infirmity will come to us all in time.

Because we are mortal with chronic illnesses, finding a way to live, happily, without obsessing about it’s end - which isn’t today - is more the focus of the book.

Having spent most of the first 5 years of my life in the hospital, and suffering all the pain of repairs and the struggle to breathe, my viewpoint is quality of life vs quantity of life.

If I hadn’t put down my foot at 14 to stop all further unsuccessful surgeries, and had the tough conversations with my Mother about stopping her fruitless efforts, she might have unalived herself under the strain. She’d already miscarried a number of babies, she’d lost my younger brother to SIDS a very short 3 days after he was born. My baby sis had also required a number of reparative surgeries (mostly successful), and Daddy Dearest had been kicked to the curb while we were in year 3 of a 5-year battle to get them divorced and deal with what was in the best interests of the surviving kids who were being emotionally destroyed by their warfare.

My decision to focus on quality of life, and paying off the debt involved in my fight to live, became my focus over the subsequent 10 years, until I left MA and relocated to CA. The book is nothing more than a practical exploration of the costs for medical care in the USA, and advocating making a conscious choice (regardless of what choice you make) so that you will not have to live with regrets or feel like you were mislead at the end when you’re evaluating your next steps in terms of quality of life.

I tell you all that to say that I’m very happy for your late-in-life arrival at a very difficult medical situation and your choice to fight for and afford your care. Some of us have been carrying this fight burden since childhood (almost 50 years ago for me) and we’re tired spiritually, and older than we look. All the book does is educate you about the financial realities of affording medical care in the USA, as well as limitations on current medical science. For those of us in this fight for 60+ years, doing nothing aggressive may be the best choice we can make so that we can focus on doing other things besides merely waiting for our next medical intervention.

Ok, I’m going to stop talking about this. Sunday afternoon, 28-JUL-24

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Thank you for that link, @A MyCOPDTeam Member - I will absolutely check it out.

Happy Sunday, 28-JUL-24

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