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Shelley Ensz

Gene Ensz had Lung Transplant

22 posts in this topic

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.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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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.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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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.

 

 

Buttons

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Shelley,

 

That is great news! I am really happy to hear the transplant was a success. Best wishes for a happy life together.

 

miocean


ISN Artist

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Oh my Goodness Shelley! I am so happy for him and you also!

Sending him Get well wishes!

Hugs,

Shirley AKA Catty

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Hi Shelley ,

 

I will keep you both in my thoughts. Get some rest yourself, too. I have always had my license checked as a organ donor.

 

Take care, Everyone.

Margaret

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Hi Shelley

 

What wonderful news for you & your husband; I'm so pleased that the transplant was a success. :happy-day:

 

I do hope he makes an excellent recovery.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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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!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Wonderful news. Best wishes from a speedy recovery.


Kay Tee

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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).


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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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,

 

warmheart

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Shelley,

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.

 

miocean


ISN Artist

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Hello Shelley

 

Marvellous news! I am so glad you and Gene can now have a better quality of life with endless possibilities before you both!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Shelley

 

I'm thrilled for you both as well....here's wishing him a speedy recovery....you are both in my thoughts too!


Sending good wishes your way!

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:emoticons-yes: Shelley - Thank you for sharing and so happy to hear that Gene is doing well. Wishing him a speedy recovery. He has a good nurse.


Gigi08

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Congratulations, Shelley and Gene! Here are best wishes for a speedy recovery!

 

Mary in Texas

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Hi miocean,

 

We do not know and did not ask the age of the donor, or anything else about the donor. The only concern we had was whether or not his surgeon found the organ acceptable enough to offer it to him.

 

He was offered a lung last August, but just when they were going to wheel him down to surgery, his surgeon rejected the donor lung. Gene was very happy about that as he already had two bad lungs, what did he need with yet another bad one?

 

So we were both entirely comfortable leaving the decision in the hands of the transplant team. What they want is the very best outcome. Our attitude is, with such a severe shortage of donor organs, getting ANY offer of an organ the transplant surgeon finds acceptable is good, rather than to end up on the way-too-popular "died waiting" list.

 

The real key here is whether you truly trust your transplant team. Do they have a good track record? If not, you should switch your transplant center. If they do have a good track record, they cherish it, and will be doing everything in their power to have your transplant be successful. Thus, they would not be offering you a truly "bad" kidney. At your next visit, you might want to talk to them about what the minimum is THEY would accept, if the kidney was going to THEM. My guess is, if they are offering you a kidney, it is probably because it will be in good enough shape to last you a lifetime (if you take the best possible care of it). But if they say they would personally turn down the expanded criteria ones, if it were them, then keep on doing what you're doing, of course!


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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It is so great to read that Gene is continuing to improve so well. I am so happy for you both, Shelley!

It is so wonderful that Gene is progressing as he is...(Jack Benny would well up with pride...Gene 66, going on 30 :jump-for-joy: )!

 

Keep On Keepin' On, You Two!!!

Thanks so much for sharing the good news!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi Shelley,

 

I apologize for my slow response regarding your husband. Congratulations on his successful transplant! :) Best wishes to you both for a long and happy life together! :)

 

Annie


Diffuse Systemic Sclerosis, (Scleroderma). Lung, skin and gastrointestinal involvement.

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Just the concept of a lung transplant is amazing, but then to see how just one lung can make such a huge difference is miraculous! I join the others in saying how thrilled I am for the both of you.

 

Lots and lots of hugs to you both.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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