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Biomarker for Diffuse Scleroderma skin has been discovered!


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Fibrosis Pulmonary Hypertension Fluid Right Heart Catherization Lung Transplant

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#21 Shelley Ensz

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Posted 16 May 2013 - 10:00 AM

Hi Miocean,

 

Oh, yeah, heartburn is a major concern for potential lung transplant patients. They have found there are much worse outcomes in people who have heartburn, so one of the criteria at the center Gene went to was that potential lung recipients couldn't have any heartburn.  However Gene had horrible heartburn and had had some esophageal erosions and had to have his esophagus stretched a number of times. So they refused to accept him for transplant unless/until he had a Nissen fundoplication surgery done, in hopes of alleviating the heartburn.

 

One of the transplant surgeons did his Nissen, and while he was in there, he moved Gene's stomach so that he would be able to also accept a left lung at transplant.  After that, the tests proved that Gene had no more heartburn, and he was finally accepted for listing (the first time around.)  Years later, it turned out that Gene got a single left lung transplant, so he was thrilled that all the groundwork had been laid for it.

 

I'm also surprised they picked the skin cancer, of all things, to focus on.  They probably just wanted to know if it was a fatal variety which is going to bump you off within 8 years.  Just in general, one of their goals for lung transplant recipients is that they want recipients to live as long as possible afterwards. Each center has its own running tally for longevity. Gene's center had an 8-year batting average, which means, on average, the lung recipients lived for 8 more years after surgery.

 

So, if/when they accept you, get excited, because you can figure they have figured out that you have, on average, at least 8 more years left on your warranty!  Most people might not figure that's so great, but when you are staring a few more weeks or months in the face, it sounds downright fantastic.

 

:emoticons-group-hug:


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.

#22 debonair susie

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Posted 17 May 2013 - 09:10 AM

Oh mi,

 

Despite your issues, you keep plugging along, taking care of business! :emoticons-clap:

As so many of us have said; You TRULY are an inspiration :thank-you:  We need that, especially when it really is much easier to just go take a nap; however, that doesn't take care of what needs to be done...as one of the BEST procrastinators, I know ALL about how it's DONE ;) ( I KNEW I should have made that my New Years resolution; To stop procrastinating.

 

mi, I'm just glad the ball is rolling, with respect to the lung transplant, albeit a tough area to wrap your head around, at this point in time. However, once you've jumped through all of the necessary hoops, I'm hoping you will feel a bit better about the concept.

 

Yes indeed; it does seem an "off the wall" query...asking about skin cancer; hopefully it pertains.

 

Just know you continue to be in my thoughts, hoping the best for you always. Sending you more hugs to tide you over. :emoticon-hug:  :emoticon-hug:


Special Hugs,

Susie Kraft
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#23 Shelley Ensz

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Posted 06 June 2013 - 03:44 PM

Miocean, do you have any more progress to report on the lung transplant issue? Is it all moving along okay?

 

:emoticons-group-hug:


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.

#24 miocean

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Posted 06 June 2013 - 06:59 PM

I saw my scleroderma specialist yesterday and am now enrolled in two studies, one for calcinosis in scleroderma and the PHAROS (Pulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma) study. They are tracking studies. I also filled out the paperwork for Adcirca which is the same as Cialas (tadalafil) for the pulmonary hypertension. She seemed to feel that getting fluid off me and treating the PH would help, even said I might not need oxygen anymore. She also said I test low on the antibody test which would show a high risk for lung disease. Of course, at the time I didn't think to ask her then why do I have lung disease? But I have had lung disease for 9 years now and I am still here!

 

​The interview at the first  transplant center is June 18th. I have not heard anything back from the second one.

 

Once again, I am hearing different things from different doctors (the cardiologist doesn't think it is fluid) but have just decided to go with the flow for a while. I look good and feel good and my kidney is doing well so I am not going to try to micromanage right now.

 

I'll keep you posted,

miocean


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#25 Joelf

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Posted 06 June 2013 - 10:04 PM

Hi Miocean,

 

Thanks so much for letting us have an update.

 

At least you're feeling quite good at the moment and things seem to be under control. I hope your appointment on 18th June at the lung transplant centre goes well and I shall be keeping my fingers and (everything else crossed!) for you.

 

Best wishes,


Jo Frowde
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#26 Shelley Ensz

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Posted 07 June 2013 - 10:43 AM

Hi Miocean,

 

Thank you for participating in several research projects -- that helps us all, eventually -- and good luck with the new medication. I hope it helps and wouldn't it be wonderful if it helps a whole lot?

 

But oh my, that all sounds confusing to me. Do you ever find yourself going cross-eyed in doctor appointments?  It's the fluid, it's PH but not the fluid, you don't have fluid, and here's a pill for the fluid. It's the lungs, it's not the lungs, its your heart, you have the lung antibody, you only have a low lung antibody, you have lung involvement, you need a lung transplant, use your oxygen, but take this handy dandy little pill and you won't need oxygen at all, but good thing your lung transplant appointment is next week, and oh my, you sure do look good, why I wish I had more patients as healthy-looking as you!

 

I'm exaggerating, of course! 

 

:emoticons-group-hug:


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.

#27 miocean

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Posted 07 June 2013 - 01:23 PM

Shelley,
Unfortunately you are not exaggerating. At least someone understands.
miocean
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#28 judyt

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Posted 07 June 2013 - 02:35 PM

Hi mio,

 

As usual Shelley has hit the spot.   I often wish I could put things as cleverly as she does.

 

However,most of us do know exactly what you are experiencing and every time somebody suggests to me to try this handy dandy little pill, I fall for it.

 

Best of luck and keep on keeping on.

 

Judyt



#29 Shelley Ensz

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Posted 07 June 2013 - 04:08 PM

Hi Judy and Miocean,

 

Probably the only reason I can nail some of these things is because I've experienced them myself, and it leaves me wondering sometimes if I'm the only person whose head feels like it is spinning in circles at some (okay, many) medical appointments.

 

Some days, or years, or doctors, are better than others. But generally there manages to be at least one source of mass confusion that can nearly derail my medical care for a spell. And even the best of doctors are seldom on exactly the same page, especially when there is complex illness at stake. Every specialist tends to look at parts instead of people and we are left juggling the big picture and trying to sort out exactly who we should really listen to regarding this, that and the other thing.

 

Sometimes, we have to take it all with a grain of salt, a shrug, or a "whatever, I am not going to micromanage this" approach, such as Miocean has so wisely assumed to resolve the conflicts.

 

:emoticons-group-hug:


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.

#30 miocean

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Posted 07 June 2013 - 06:17 PM

Did I ever tell you I love you all for being there and understanding?  :you-rock:

 

(oh yeah, I think i did but I'll say it again)    :D

 

:emoticons-group-hug:

 

miocean


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#31 msjess

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Posted 08 June 2013 - 10:38 AM

Miocean, I hope you're able to enjoy some of your weekend. It seems like you have more than enough on your plate, and I hope it all settles down for you soon. Try to do something just for you, something that will take your mind off from the health-stuff for a few minutes, or better yet an afternoon or so. My thoughts are with you. Keep us updated.