Lung Transplant

M

marvin4239

New member
I know no one would like to give medical advice especially over the internet but I'd like to know since there is so much wisdom on this site if anyone has any experience with Lung Transplants. I just finished a 9 day cruise from Indiantown Florida across the Okeechobee Canal to the North end of Sanibel Island and it was a wonderful 290 mile trip. On my way back to Indiantown I overnighted at Moorehaven Marina. They were burning off the sugar cane fields and due to my emphysema I went into resperatory distress apparently from the smoke. This is nothing new to me it happens at least once a year due to my genetic form of Emphysema.

On a side note I'd urge anyone with a history of emphysema in their family to be tested for Alpha One Antitrypsome Syndrome which is what I have. If left untreated it destroys your lungs and liver. The test for it is just a simple blood test. Smoking has nothing to do with this type of emphysema. The treatment for it is and infusion in my case every two weeks of a drug called prolastin which is administered by IV. This disease is fairly rare but I believe their are alot who have it and it hasn't been diagnosed. In severe cases their are your children in severe cases who die from it. Forgive me for going on about it but I try to make everyone I come in contact with aware of it.

Back to my original question I'm currently in the hospital and will be back to normal 30% lung function but they are suggesting I get a lung transplant. At 61 I'm not really sure about this and have of course searched the internet where you can find a lot of information but I'd really like to hear from someone who has actually had a lung transplant.
 
First, I am sure that everyone on the forum wishes you the very best and are saddened to hear of your medical problem.

Since you have already searched the internet, and most likely found the American Lung site--which lays out the issues very well.

My own experience is with kidney transplants--and it goes back to some of the first in the1960's. Generally with transplants one considers the quality of life before and after, as well as the 1 2 and 5 year survival rates (with and without transplant. You will most likely be on Immunosupressive drugs for the rest of your life. These decisions are very difficult to make.

Our prayers are with you.

Bob
 
Marvin-

The majority of my professional career I worked on a medical research campus (Blood Research Institute, Milwaukee, WI) involved with a single enzyme involved in thrombocytopenia disease (a blood coagulation disorder).

I routinely became involved in the early developments of stem cell research & treatments for host-graft bone marrow research. My work involved diagnosis and research - I was not involved with treatments nor was I involved with MD/patient communications. None-the-less, based upon my experiences with a plethora of distinguished PhD/MD researchers, I came to make my own decision regarding transplants - it equates to quality of life.

I wish you all the best in finding comfort and solace in your decision - whatever your decision.

I wish for you fulfillment and happines in the years ahead.

Norm
 
My own Father had a dual lung transplant over two tears ago due to alpha one disorder, he went from 11% lung capacity to 85% within less than two weeks after surgery! There are obvious risks but when faced with a low quality of life it was an easy decision for him. In Canada it is covered under health care and the biggest hastle after surgery was all the anti rejection drugs, but hey small inconvienience! This surgery gave him a second chance at life! If he didn't have it he would't be with us today.
 
Thanks to all the kind and informative response's and pm's of support. And please if you know of someone with respiratory problems please get them tested for Alpha 1 it is definitely terminal if not treatd. And if you were a smoker don't let them blame it on that without the alpha test. This is in no way and endorsement of smoking but it simply isn't always the cause of respiratory problems.

Thanks again.

Now back to C-Dory business it's a really excellent cruise from Indiantown Marina to Sanibel. Tow rigs can be safely stored at Indiantown but I'll post more on my cruise when I get a few more pictures posted in my album.
 
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