Somebody know anything about pulmonary transplant?
Transplant : Somebody know anything about... - COPD Friends
Transplant
Written by
ajua
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12 Replies
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I am in the final evaluation stage now. The testing process is quite extensive, but my form of COPD is very progressive and I am only 59. Therefore this is my best option (hope) for extended life. Let me know if you have specific questions. I can try to give you some answers.
I'm about to start the evaluation process in a few weeks. I'm 61, with lifelong bronchiectasis that started getting worse over the last ten years or so. I'm down to 26% lung function now, so I finally heeded my doctor's advice and contacted the transplant team for an evaluation. It's a scary prospect to be sure, but lots of reasons to be hopeful if all goes well. I've got a million questions, most of which I hope will be answered when I finally meet with the transplant folks. But I'd like to be in touch with others who are going through the same experience. It looks like the first few days of evaluation are all about imaging: contrast mediums and CT scans, echocardiogram, imaging my carotid arteries. The second day is gastrointestinal imaging, which sounds like a whole lot of fun. The third day I get to meet with the transplant team at last, a social worker, even I think a transplant recipient. I'm very much looking forward to that. There's talk of an angiogram too, although I don't have that one scheduled yet. I'm wondering if I pass all these screenings, do I get on the list? I guess I'll find out in a few weeks!
@rduffy I have my evaluations tomorrow, Wednesday, and Thursday at UF Health/Shands in Gainesville, FL. I have all the tests you listed plus an appointment with a psychologist, an evaluation with a physical therapist (I guess a workout - they told me to bring gym clothes!), and a heart catheterization. I'll try to keep in touch and let you know how it goes.
Thank you for keeping me informed, I wish you the best of luck and hope everything turns out well. You are in my thoughts and prayers.
Thanks, I really appreciate that! They haven't asked me to show up in gym clothes yet but I'm still waiting for a package of information in the mail with details about my visits. This process strikes me as a bit of a contradiction. One the one hand we have to show we're sick enough to need a transplant, but on the other hand we have to show we're healthy enough to be able to deal with it. That's an interesting balance to have to strike. In the meantime, good luck to you! Hope all your test results come out exactly the way you need them to.
--Bob
@rduffy Two days of evaluations are complete. Tomorrow I have the heart catheterization. The "gym clothes" were necessary for the physical therapy evaluation. Be prepared to leg press 80% of your body weight. If you can't do it, they will not list you until you can. I passed with 83%, but now I have to work to maintain that or increase it. They re-evaluate throughout "the wait". You also have to be able to sit-stand-sit-stand (5 repetitions). Without using your hands or arms. They time you, so work to do it quickly. The psychological part and psychosocial evaluations were also quite extensive. The rest were your typical scans and recordings for your other organs. I'll keep in touch. Have a breathe easy night and God bless you.
That's really interesting! I'm pretty sure I can still do those things. I guess I'll find out shortly. In the meantime, you've inspired me to kick the exercise up a notch. I've been slacking off a bit of late. Did you bring family with you for the psychosocial evals? My pulmonary doc recommended I do that. Partly to keep them all in the loop and partly to show the team the kind of social support I have. Thanks for the update! Hope the rest of it goes well for you.
Back home, safe and sound. I had the heart catheterization today and I was a little anxious that they did not put me to sleep. I was asleep when I had it done in 2011. It was quite uncomfortable but tolerable. Yes, your primary care giver must attend with you and they prefer that your secondary are there too. My husband was with me all three days and my daughters came down for the psychological, psychosocial, and support group sessions. The support group sessions brought together both pre and post transplants. My group had 3 pre and 8 post patients. Very informative and you could ask any questions that you might have. Longest out was a post nine years and shortest was a man post six days. Amazing. My email is ldycatcoach@yahoo.com. It might be easier to stay in touch that way. Have a great night. I think I will sleep until noon tomorrow.
I belong to the COPD foundation they send a magazine .and when you call or join an line they send lots of information and lung transplant is in there hope this helps
A FRIEND OF MINE TOOK HER FATHER FOR A FIRST STEP TREATMENT AT A CLINIC IN FLORIDA WHICH SHE TELLS ME HER FATER SAID HE CAN FEEL A LITTLE CHANGE. SHE NOW WILL TAKE HIM FOR THE SECOND STEP WHICH IS SUPPOSED TO SHOW MORE IMPROVEMENT. IT SEEMS LIKE A LONG AFFAIR BUT IF IF HELPS ANYONE BREATHE BETTER IT IS CERTAINLY WORTH IT. LOOK UP ON LINE AT COPD HOSPITALS AND GET TESTIMONIALS FROM PATIENTS. THEN MAKE UP YOUR OWN MIND TO THE PROS AND CONS
Iam curious. What insurances will cover a Lung Transplant. And will they only perform this transplant only if that is the patients only option to live.
My insurance is Blue Cross / Blue Shield State Health Benefit Plan. They cover after yearly out of pocket is met. You will have to check with your individual company. Transplants are performed when it is the best option for life extension. You want to keep your own as long as your quality of life is good. Life years post transplant will vary from one individual to the next. It all depends on how well you body accepts the new lungs and how well you take care of them.
