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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 miocean

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Posted 11 July 2010 - 11:29 AM

I hope I'm not boring you with my updates on my transplant. I am doing so well, it gets better everyday. Finally my Prograf levels are where they should be! My White Blood Cell count had dropped very low so my doctor changed the doses of my medications and took me off an antibiotic and it is now almost normal. I only have to go for bloodwork once a week now! Fortunately, the phlebotomists at the hospital are very good, I have only had a couple that haven't been able to get the vein.

I thought that the extreme exhaustion I was experiencing on dialysis was scleroderma fatigue. It is definitely better now, however NOW I know what scleroderma fatigue is like. I still get so tired but nothing like before! I am sleeping well at night, my bladder has finally settled down, yet by the afternoon I am very tired and I don't do that much during the day. My husband and I went for a short walk down the boardwalk the other day and I could barely make it back. But at least I am walking now. Little by little.

I had been lurking on a transplant forum since mine and today, in celebration of my so far successful one, I joined. The ISN forum has been so helpful to me, and the transplant one gave me so much needed information that I hope I can return the favor on both. It is scary to have a chronic disease that very few people have even heard of and the internet can make it worse. To hear real life experiences makes it so much easier to bear the effects of the disease.

Once again, thank you all. And today, as everyday, thank you to my donor and his family for this gift of life. I know more than likely they won't want OUR organs, but please urge all you know to become a donor. Besides having it noted on your driver's license, it is important to notify your loved ones of your wishes as they can override your request.

miocean
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#2 Jeannie McClelland

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Posted 11 July 2010 - 11:50 AM

More good news! That's just wonderful. I really look forward to your updates. I suppose this will sound funny, but I kind of think a success for one is a success for all. You've already given a great deal of hope and optimism to many of us, Miocean, so you are due thanks too. Sharing can be hard.

Big warm and happy-for-you hugs,
Jeannie McClelland
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#3 Sandy B

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Posted 12 July 2010 - 02:59 AM

Hi Miocean,

Just wanted to say I am really happy for you that you are on the mend, every little step forward is not a step backward and that is so important and it is very encouraging for everyone on this site to follow your progress. Progress no matter how large or small is important to all of us and it gives us hope that no matter what degree we are affected by this disease it is possible to move forward.

Best wishes for every little step you take, learning to walk before you can run is probably a very prudent approach at this stage, so don't over do, take care and enjoy.

Seize the Day

Sandy B

#4 Margaret

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Posted 12 July 2010 - 03:31 AM

Hi Miocean ,

So glad to hear the good news. Thanks for keeping us posted....I don't mind the updates at all. :happy-day:

Take care, Everyone.
Margaret

#5 janey

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Posted 12 July 2010 - 03:34 AM

Miocean,
It's always good to hear that you are continually improving! It's thrilling! Glad to read that you are starting to get up and move around. What a great attitude. We all know, or should know, that a positive attitude is one of the best medicines.

Even though half of my organs are worthless for donation, I have informed my family as well as indicated on my driver's license that I am an organ donor. You are so right - organ donation is extremely important (as you well know :VeryHappy: ), but right now, there are more people that need organs than the number of organs available.

Thanks for the update!
Janey Willis
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#6 Joelf

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Posted 12 July 2010 - 08:12 AM

Hi Miocean
I'm so pleased to read about how well you're doing and am really glad that the transplant has been so successful!! :happy-day:

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#7 Shelley Ensz

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Posted 12 July 2010 - 08:56 AM

Hi Miocean,

I'm thrilled for you and always eager to hear your kidney transplant updates.

Do they do any rehab after kidney transplants? My husband had 4 months of pulmonary rehab starting right after his single lung transplant. Within a few weeks of transplant they had him walking over a mile on a treadmill, and lifting weights. It was all structured so that he wouldn't overdo it or do too much, too fast, of course. Once he graduated, we continued the exercise program at home. I was aghast because just a few weeks post transplant, he had more physical endurance than me! But I exercise alongside him now, going through similar motions but with a lot lighter weights, speed, and distances. We even bought a weight set for home, for those times when I'm not up to going to the exercise room, like last week, when I overdid it one day (by just a little bit), but that was enough to do me in for a few days straight so I'll back off a bit and stay there for a few more weeks before trying to increase again.

Anyway, even if they don't do rehab, perhaps you could design your own mini rehab program, with your doctor's help, because it is hard to gain and keep endurance with scleroderma, not to mention recuperate after such major surgery.
Warm Hugs,

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

#8 Lynnie

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Posted 12 July 2010 - 09:55 AM

Hi Miocean

It's always lovely to hear how you are doing and great that even though scleroderma can take a lot away from us all, life and its joys can be given back to us in so many ways. The dear donor and their family have given you the greatest gift of all...life and that's wonderful, and long may it continue for you. :emoticons-yes:

Take things easy OK?
Warm good wishes
Lynn x :emoticon-hug: