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Biomarker for Diffuse Scleroderma skin has been discovered!


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Lung Transplants And Gerd


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#1 Clementine

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Posted 26 March 2007 - 02:01 PM

I have an acquaintence who's husband has scleroderma. He needs a double lung transplant (he is only in his 30s) and I've learned a little more about it through her. I just learned that it is hard to get approved for a lung transplant if you have sclero WITH GERD. A weak esophagus apparently lends itself to organ rejection.
She also said her husband's insurance would not cover the anti-rejection meds that many of us take because it is experimental at this point. I just though others may wnat to hear this new information.

Also, I cannot find any information on Cellcept and it's outcome on this website. I found it for other meds but not Cellcept. Is this just because it is not proven yet?
Thanks everyone,
Jennifer

#2 Guest_Sherrill_*

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Posted 26 March 2007 - 03:19 PM

Hi Jennifer,

Here's some of the info about Cellcept on the website: Cellcept.

There's another item on the Medications page too so have a look. Is this the sort of thing you wanted?

Warm hugs,



#3 Clementine

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Posted 26 March 2007 - 04:01 PM

Thanks Sherrill!

 

I was wondering why Cellcept is not listed under Treatments and Trials, and if the reason was because it's not really proven yet to be effective.
Thanks for the Cellcept links.

 

Jennifer



#4 Shelley Ensz

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Posted 26 March 2007 - 04:24 PM

Hi Jennifer,

As you may know, my husband Gene is on the lung transplant list. In order to be accepted for it, he needed to have a Nissen fundoplication surgery, which tightens the neck of the stomach and relieves heartburn. In his case, it entirely cured him of heartburn.

While they were at it, they also used a portion of his stomach to lengthen his esophagus, because he is over 60, and people over 60 only get to have one lung. This enables him to be eligible for either a right or a left lung at transplant time, thus improving his odds of getting a good match. He is currently (knock on wood) inactive on the list; meaning he is on the list but not actively seeking a lung at this moment.

Transplants are now standard (in my understanding) and meds for it should be covered, provided they have medication coverage. If he has ever served in the armed forces, he may be eligible for medication coverage through the V.A. -- but there can be a long wait list (sometimes years) for eligible vets so he should apply for (free) V.A. coverage right away. Anyone who has ever served in the armed forces in any capacity, with an honorable discharge, is probably eligible for V.A. services and V.A. medication coverage (which is $8 per prescription). The V.A. also does lung transplants, at some of the centers.

Contrary to popular impressions, lung transplants do not really extend a person's lifespan very much. Rather, they generally improve what is left of it. Many people die during the surgery, from organ rejection, or as a result of being immuno-compromised from the anti-rejection medications. But at least it is an option, and there are some wonderful success stories of people who have fared very well with the transplants, for many years.

I hope your friends husband is one of the lucky ones!
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.

#5 Clementine

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Posted 26 March 2007 - 05:05 PM

Shelley,

 

First of all, my heart goes out to you, Gene and your loved ones. I did not know about Gene's condition. I guess I need to start reading more. I will keep him in my thoughts and hope that he never needs the transplant.

You really cleared things up for me and I will pass on the information to my friend. I am taken aback that she is not a member of this forum as I myself could not cope without it.

I am not sure why insurance would not cover his anti-rejection pills because it covers mine for scleroderma so you'd think it would definitely cover his.

Thanks again, and tell Gene he's going to be alright!!

 

Jennifer