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Biomarker for Diffuse Scleroderma skin has been discovered!


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Another kidney


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#1 miocean

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Posted 04 March 2010 - 02:40 AM

This morning I received a call from the University of Maryland with an offer of a kidney. They wouldn't tell me the age of the donor but said it wasn't an expanded criteria kidney and that the person died of a head trauma. They have to test it for infection and match my blood with it. It has a very low creatin level which is good. There are two people in front of me and they are going to call another candidate. They told me to go along with my normal day and expect a call around 4:00. Maryland is about 3 hours away so we would have to make arrangements for my husband to stay at a hotel while I am in the hospital. I'll let you know what I hear this afternoon.

miocean
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#2 Amanda Thorpe

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Posted 04 March 2010 - 03:10 AM

Hello Miocean

What great news! I hope it becomes fantastic news, that the kidney is yours!

Take care.
Amanda Thorpe
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#3 alice1

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Posted 04 March 2010 - 07:45 AM

Wonderful, you're in my thoughts...alice

#4 Shelley Ensz

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Posted 04 March 2010 - 08:07 AM

Hi miocean,

What great news! Have you heard anything back from them yet?
Warm Hugs,

Shelley Ensz
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#5 Buttons

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Posted 04 March 2010 - 08:23 AM

What good news for you Miocean, I do hope this one is for you.

Take Care

Buttons

#6 warmheart

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Posted 04 March 2010 - 10:02 AM

Hi miocean,

How exciting--it's after 4 now, so hopefully you're already on your way to Maryland. You're in my thoughts, too! And of course the donor and his family. Hope this one's the charm.

Hugs,

warmheart (pretend there's a fingers crossed smiley here!)

#7 Sheryl

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Posted 04 March 2010 - 11:15 AM

miocean, I hope you are just to busy packing to write us with news. If we don't hear from you for several days we will know you are in having that new kidney put in place. Best of wishes blowing on the wind towards you.
Strength and Warmth,
Sheryl

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#8 miocean

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Posted 04 March 2010 - 11:40 AM

Well, the call never came and when I called them I couldn't get an answer at two different numbers so I guess the kidney went to someone ahead of me. I am disappointed and encouraged at the same time. Disappointed because it sounded like a good kidney and encouraged to be near the top of their list too. It also prepared me for traveling a distance for the transplant and the arrangements we will have to make. When it is the right time, the right place, and the right kidney it will happen. I will call Maryland for some more info and answers to questions. Tonight I have a dialysis/transplant support group meeting and a doctor from PA is coming to speak with us. Thanks for all your well wishes and support!

miocean
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#9 Snowbird

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Posted 04 March 2010 - 11:59 AM

Just wanted to wish you success as well Miocean. Will also keep you in my thoughts.
Sending good wishes your way!

#10 Sheryl

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Posted 04 March 2010 - 02:33 PM

Miocean, I hope you have a set of bags packed and set aside just in case you only have a couple hours notice once again. Your hubbies bag should be packed and sitting right next to yours. Then you can just say where do you want me to go for my perfect kidney. I sure hope no one bumps ahead of you and puts you farther down the list. Waiting for the perfect kidney could be troublesome. At least you have the opportunities to turn them down and still stay at the top of the list. Keep your hopes and dreams alive so that this can be done quickly and perfectly. All my best to you.
Strength and Warmth,
Sheryl

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#11 erika

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Posted 04 March 2010 - 09:57 PM

Dear Miocean,

Although stressfull it is good that you are at the top of the list. I wish that you get the best kidney.

Erika

#12 Shelley Ensz

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Posted 05 March 2010 - 03:48 AM

Hi miocean,

I'm sorry that kidney didn't work out. I had to laugh though when you said, "They told me to go along with my normal day". There is no such thing as a 'normal day' when you might be having a transplant that day!

I'm surprised that they were able to give you so much advance notice. Gene was called twice for transplant (the first one didn't work out, at the very last minute before surgery) and each time we had to be at the center within two hours. However, after we got there, each time it was a "hurry up and wait" thing because they have to find recipients for everything before they proceed, and the last time, they had trouble finding a good recipient for the heart.

We knew what center he was going to have the transplant at, and even though it is local, we scoped out the hotels near the center ahead of time. They offer special hotel rates for transplant families. And I also found out how to get transportation from the hospital to the hotel in the middle of the night, since most transplants occur then. In our case, we had to call hospital security for a van to the local hotel because the hotel shuttle was closed then. Even though we're local, when under stress and in the middle of the night, and exhausted, and in a snowstorm, there was no way I was going to be driving home nor straying far from the hospital the first few days.

Sheryl mentioned having the bags packed. Isn't that the greatest part about transplant? We had both our bags packed and in the car even before Gene's listing reactivated last year. And it worked out marvelously, as he was suddenly hospitalized several times in the interim -- and it was stress-free to just have to go to the car and bring in his suitcase.

We decided it was such a delightful thing to be so prepared that we still have our bags packed now, but it's in case we get a sudden urge to leave town for a mini-vacation! You too will be able to enjoy tons more freedom after transplant and not have to put the kabosh on spur-of-the-moment activities because of your dialysis schedule.

May your next transplant call be your best call!
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.

#13 debonair susie

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Posted 05 March 2010 - 09:59 AM

Hi miocean,

We all can imagine your diapointment, yet, you have the right attitude about this!
With you at the top, you have a great seat :emoticons-yes:

Along with the otherd, you will definitely be in my thoughts.
Of course we'll keep our fingers crossed for you!
Special Hugs,

Susie Kraft
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