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#1 miocean


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Posted 11 January 2011 - 05:37 AM

Hello everyone!

Well, we all know it is a special date today, 1-11-11.

:happy-day: But for me it marks the 10th month anniversary of my kidney as well! :happy-day:

I can't believe how this remarkable gift has returned me to "almost" my old self. I feel like I am a participant in life again, and a contributor :excl:

So many things besides the quality of my life have improved. My skin had started to soften and continues to, down to 8 from 45, my pulmonary function has improved, my echo showed no signs of Pulmonary Hypertension, and I definitely have more energy not having a dialysis machine, while giving me life, suck the life out of me three times a week. The calcinosis on my buttocks, while still there, is not as painful and the one area that was rough to the touch and really hurt, is gone.

All is not perfect, the transplant did not make the scleroderma magically go away. :( My GI system is worse and I am dealing with issues of diarrhea, probably medically induced and nothing I can do about it. I have more medicine to treat it. My lung fibrosis has increased. My hands are less swollen but seen to be curving more and I am back at Occupational Therapy. The joint at the base of my left thumb is extremely painful and I wear a splint most of the time. Surgery "may" be in my future but between the transplant and scleroderma it might not even be an option. It's not painful enough at this point to even consider it. I have times when I just crash. I do too much and then pay the price. All I can describe it as is my legs "just go." Then I am out of action for a while.

Don't get me wrong, I'll take it :excl: Anything is better than the "life" I had before the transplant. I realize now how very sick I was. People are telling me how worried they were about me. (I thought I was doing pretty good :P ) I still need to learn to pace myself. I tend to "use up all my spoons."

Well, after resting yesterday, I need to get a move on. Too much to do and not enough time. I try to pace myself so I don't end up with a day of not being able to do anything, like yesterday. Hope you are all doing well, thanks for all the support :excl:


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#2 Jeannie McClelland

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Posted 11 January 2011 - 06:33 AM

Happy Anniversary! It's a memorable day indeed and I'm sure the 10 months must have whizzed past. Your "success" and survivorship is an inspiration to us all. I look forward to sending you :flowers: on your 11 year anniversary!

Warm wishes,
Jeannie McClelland
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#3 Joelf


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Posted 11 January 2011 - 06:38 AM

Hi Miocean

Many congratulations on the 10th month anniversary of your kidney transplant!! :happy-day:

It's wonderful news that your quality of life has improved even if everything is not quite as good as you would wish. That's Sclero for you!! ;)

Your Sclero journey has been quite an inspiration to me and a lot of our other members as well.

May you continue to improve in leaps and bounds!! :VeryHappy:
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#4 Shelley Ensz

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Posted 11 January 2011 - 08:16 AM

Congratulations on your 10 monthaversary since kidney transplant, Miocean!

As you know, my husband Gene is just two months ahead of you with his lung transplant, and he just celebrated his 1 year anniversary for it. We got all dolled up and went out to dinner to celebrate. He's had many infections since transplant but finally got the word that he is free of all infections -- for the moment, at least, and hopefully for a nice long time to come. So I know what you mean about, some things better, some things worse, although with scleroderma, you have a lot of other 'worse' things to also deal with.

Please keep good track of your spoons. I've found there is no cheating with spoons. We really can't borrow spoons from tomorrow without our bodies forcing us to pay those spoons back (and often, then some) tomorrow. But great pacing does allow us to at least get something done every day, even if it's never as much as we'd wish, is it?

Here's hoping you enjoy many more transplant monthaversaries!

Warm Hugs,

Shelley Ensz
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#5 NorthStarHope


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Posted 11 January 2011 - 09:49 AM

Dear miocean, :happy-day:

You are truly an inspiration to all.

It's so rewarding to know that life can offer so much when you think all is lost. When I think of how many times I have almost lost my sister, and now to see her out shopping and doing some things I thought she would never do again really makes me believe there is always hope for everyone.

Thank you again for sharing your stories with us!! :thank-you:

northstarhope* :emoticons-i-care:  :thank-you: 

#6 debonair susie

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Posted 11 January 2011 - 12:08 PM

Happy Happy 10th Anniversary, miocean! So much to celebrate, with regard to your kidney transplant.

We have a very special friend who is nearing 70 years old and had his kidney transplant 25 years ago!
He's always been the kind of person to live life to the fullest too, I might add! ^_^

At any rate, this is really wonderful, miocean and I'm very happy for you!
Special Hugs,

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#7 susieq40


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Posted 11 January 2011 - 02:02 PM

Happy 10 month Anniversary!!! :happy-day:
It's amazing to feel better! I look forward to the day when I'm
feeling good enough to overdo it a little. :) So happy for you!!!


#8 miocean


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Posted 12 January 2011 - 06:48 AM

:thank-you: Aw, shucks :wub: Thanks everyone. :thank-you:

I am happy to hear Gene is now infection free, I know he went through a rough time. I have been VERY fortunate, not even a cold, and my doctor tests frequently for BK virus and CMV as well. My donor and I are both positive CMV so the chances of my getting it are "intermediate." I carry masks with me and if I think I need to, put one on. Lung transplants are much harder on the body than kidney, from what I've read.


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#9 Amanda Thorpe

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Posted 12 January 2011 - 12:03 PM

Hello Miocean

Congrats! :flowers:

You're right about not knowing how ill you are until you get better. I never realised how awful I felt and how ill I was because of the heart failure until I had my pacemaker defibrillator implanted. Boy I don't know how I got out of bed everyday before I had it!

Oh yes you slow down now and count your spoons...or else!

Take care.
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#10 erika


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Posted 13 January 2011 - 03:23 AM

Congrats Miocean!

:emoticons-yes: :emoticons-yes: :emoticons-yes: :emoticons-yes: :emoticons-yes: :emoticons-yes:


#11 enjoytheride


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Posted 13 January 2011 - 04:47 PM

Happy Anniversary. I hope that you find other problems are still improving with your new found health. It's still early days. (((hugs)))

#12 Sandy B

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Posted 14 January 2011 - 12:53 AM

Happy Anniversary miocean,

Wish I could send you a bunch of spoons instead of the customary bunch of flowers, wouldn't that be wonderful. I hope your recovery continues this coming year.

All the best

Sandy B