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Gene Ensz had Lung Transplant

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I have some great news to share!


Gene Ensz, ISN Vice President (and my marvelous husband) had a very successful single-lung transplant on January 7th. He is completely off oxygen and has been recuperating at home since the 15th. He is feeling better than ever, and already back pitching in with some ISN responsibilities.


He does not have scleroderma; he has/had Alpha-1 Antitrypsin Deficiency which can cause early onset of severe COPD (Chronic Obstructive Pulmonary Disease, or emphysema) and asthma. He was originally listed for transplant over 6 years ago but chose to go inactive until last spring, when he requalified all over again (since it had been so long since his original listing) and reactivated on the list last summer.


We are enormously grateful for the transplant program, the deceased donor and their family, his world-class transplant team, and all the well-wishes which have been sent his way.


We hope that everyone whose religious and personal beliefs permit it are already listed as organ donors or will actively seek ways to come one, because thousands of people die needlessly each year, not due to a lack of available organs but due to a lack of pre-arranged consent. And sometimes our loved ones make decisions on our behalf that we would not wish, so making our desires (for or against) clear ahead of time can be very beneficial for all concerned.


Anyway, please join me in giving lots of warm wishes to Gene in hopes of a continued delightful recovery.

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Congratulations and warm hugs to you both, that's wonderful news. Is Gene nice and pink now? Does he miss his constant companion (the O2 tank)? laugh.gif I wish you both many more years together, enjoying life and loving each other.



I'd also like to urge everyone to consider blood, tissue, and organ donation and to make a living will that states that preference. If you'd like to be a donor but think your health may exclude you, please check with a transplant center. You might be pleasantly surprised.


Here in the USA many states will code driver's licenses to let emergency services know that the person wishes to be an organ donor. I believe there are also 'dogtags', etc. that, like a medical alert bracelet, will tell people that the wearer wishes to be a donor. In many places there are also facilities to pre-register as a donor.


The bodies of organ donors are treated with the utmost respect and dignity, as are their families. If you are considering becoming a donor but are concerned about the postmortem process, any transplant coordination center would be glad to answer any questions you might have.


With fondest regards to Gene and Shelley and best wishes to everyone awaiting a transplant.

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Hi Shelley


Just want to add my best wishes to you both and hope that Gene continues to make a speedy recovery.


It is amazing what doctors are able to do now and the difference that transplants can make to peoples lives.




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Yippee, Yippee, Yippee!!


I'm so happy for the both of you. What wonderful news. You know I don't think I knew that Gene had Alpha-1 Antitrypsin Deficiency and not Scleroderma. I have a friend here locally that her husband has Alpha-1 Antitrypsin Deficiency. He's refusing treatment :(


The best to you both!

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Thanks everyone for your well wishes for Gene, they are greatly appreciated!


Yes, Sweet, it would be a little too much if Gene and I both had scleroderma; although I do know of a few couples where that is the case, usually after meeting through our site or scleroderma events, so it's not out of the realm of possibility, either. And others assume that since he was the one on oxygen, he was the one with scleroderma. Makes sense to me!


As it happens, not everyone with Alpha-1 Antitrypsin Deficiency (A1A) can have treatment; it depends on what their levels are, since the A1A treatment is very intensive, extremely expensive, and goes on forever after it's started. Many people opt out of it due to the cost factor alone. In Gene's case, his A1A levels were too high to be eligible for A1A treatment (insurance coverage is often reserved for the worst A1A levels) but still bad enough to contribute to severe lung problems at a younger-than-normal age. A1A can also affect the liver and many other things. But his brand new lung should be plenty to last him a lifetime as he is already 66 (going on 30).

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Hi Shelley,


That is great news! I'm already an organ donor and a bone marrow donor too. Hopefully someday I'll get a call and they'll be able to use my marrow--what a privilege to help someone else live.


Congratulations, and best wishes!


All the best,



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Do you know how old the donor was? The reason I am asking is I am at the top of the list for a kidney transplant but all I've been offered is expanded criteria kidneys. These are donors that wouldn't have been accepted years ago but due to the shortage of kidneys are being offered now. The donor is usually in their 60's with underlying physical issues.I have been turning them down.


Once again I wish you and Gene the best.



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