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Got my lab tests back today!
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Topic: Got my lab tests back today! (Read 13321 times)
willowtreewren
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Got my lab tests back today!
«
on:
October 05, 2009, 08:30:21 AM »
I saw my doctor today about the lab work I had done last week. The transplant center agreed to retest me IF I could bring my creatinine clearance up. Of course it cost ME $500 each time I have this test done outside the transplant center!
BUT, with all the work I've done this year, I have improved my CC from 69 to 88! I lost 13 pounds, too. And I'm officially now just in the overweight category!
The bad news is that our transplant center requires a CC of 90!
I am simply going to tell them that we will take our business elsewhere if they will not allow me to give Carl one of my fine kidneys.
So, I'm feeling pretty good.
Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011.
paris
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Re: Got my lab tests back today!
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Reply #1 on:
October 05, 2009, 09:58:22 AM »
Good for you Aleta! You made a great change this year
Now, go agrue with the transplant center!! 88 versus 90 -- a difference of 2. I hope they reevaluate your situation. How soon can you talk to them? Keep us updated
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
thegrammalady
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Re: Got my lab tests back today!
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Reply #2 on:
October 05, 2009, 10:48:41 AM »
keep up the good work. i'm so happy for you.
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Jie
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Re: Got my lab tests back today!
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Reply #3 on:
October 05, 2009, 08:14:06 PM »
Great Aleta, if every esrd man has a wife like you, the world would have fewer depression men!
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sico
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Re: Got my lab tests back today!
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Reply #4 on:
October 05, 2009, 08:38:20 PM »
Thats great Aleta, hopefully the transplant center will grant you your wish.
I agree with the previous posts too.
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Brad
"Got myself a one way ticket, going the wrong way" - Bon Scott
6/11/08 diagnosed with ESRF, dialysis that day
HD and PD
8th of April 2010 Live kidney transplant from my father.
Jean
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Re: Got my lab tests back today!
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Reply #5 on:
October 05, 2009, 08:43:27 PM »
Aleta, good for you, go and inform those people to give you a break already!!!
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One day at a time, thats all I can do.
willowtreewren
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Re: Got my lab tests back today!
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Reply #6 on:
October 06, 2009, 11:31:26 AM »
Thanks, everyone. My transplant nurse has not been in her office yet.
But my doctor says that I should get extra points just for shear determination!
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011.
Mizar
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Re: Got my lab tests back today!
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Reply #7 on:
October 06, 2009, 01:29:35 PM »
Good News! I hope this Works out for You and Carl and Quickly too.
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Sunny
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Re: Got my lab tests back today!
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Reply #8 on:
October 06, 2009, 02:11:13 PM »
Wow! You've done really well and I hope things will work out so you can give a kidney. It's not easy to losing 15 pounds.Congratulations.
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Sunny, 49 year old female
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willowtreewren
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Re: Got my lab tests back today!
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Reply #9 on:
October 06, 2009, 05:09:36 PM »
So, I talked with the TX nurse today and she pretty much pooh-poohed that they would let me donate.
"after all, 88 is still pretty low..."
And when my doctor called them yesterday (I LOVE my doctor), the receptionist said that the transplant doctor did not know who she was calling about and said that 88 was "iffy."
Carl and I are pretty fed up with our center. He is generally easy-going and laid back about things so I did not realize how disgusted he was feeling about them. We talked long and hard about it. I'm calling two other transplant centers tomorrow. Both are near enough that we could handle going there. So I'm going to find out what their cut-off is for creatinine clearance for living donors.
I am ready to
I never thought it would be easy, but this is getting ridiculous. I haven't shared all the crap that we have gone through with our center....
Time to move on to another one.
Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011.
Romona
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Re: Got my lab tests back today!
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Reply #10 on:
October 06, 2009, 08:27:25 PM »
You are amazing!!!
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Des
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Re: Got my lab tests back today!
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Reply #11 on:
October 07, 2009, 12:06:39 AM »
WTW...
I think they are just being carefull.... they don't want you harmed when they remove one of yours ....and they don't want to give hubby a "not so good" one either.(afterall it is secondhand) The one he gets needs to work twice as hard to get rid of build up toxins and that can strain it even more. He needs a super, above normal kidney. (don't we all)
You know 90 and above is actually the "normal". (if there is such a thing as normal heheh)
Good luck my friend... I hope you get this sorted out.
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...
South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
willowtreewren
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Re: Got my lab tests back today!
«
Reply #12 on:
October 07, 2009, 06:43:02 AM »
Well,
I talked with another transplant center that is only 2 hours away this morning. They were VERY helpful. Their cut off is 80 for creatinine clearance. AND they said that UNOS changed their rules this year so that you can be listed at more than one hospital in a procurement area (my next step would be to go to Atlanta's Piedmont where BountyHunter is listed).
I have already put in motion the transfer of records.
Of course this doesn't mean that I will pass all the other tests, but I had my EKG last year and it was GOOD!
I've had a colonoscopy (when I turned 50), but will need another - ugh! I'm healthy, healthy, healthy!
Des, I appreciate your concern. But in terms of living kidneys versus cadaver kidneys, a 1/6 living kidney match is better for the recipient than a 6/6 cadaver match and I am a 6/6 living match!!!!
Carl and I talked long and hard about it. I hate surgery. I really, really do. I had so many surgeries as a kid that I have lost count. But the outcome would be sooooo worth it.
Fingers crossed.
Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011.
willieandwinnie
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Re: Got my lab tests back today!
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Reply #13 on:
October 07, 2009, 09:51:42 AM »
Aleta, my fingers are crossed too. Len had 6/6 cadaver match and his doctors said a living donor would of been much better for Len. I am sure that no matter where you go they will make sure you are healthy enough to donate. I'll keep saying a prayer for you.
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Jie
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Re: Got my lab tests back today!
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Reply #14 on:
October 07, 2009, 08:00:16 PM »
Even 0/6 match, a living donor is still better than 6/6 a cadaver kidney. Aleta, you and Carl is 6 out 6, the likelihood is extremely low for a couple, what a God-making couple!
I wanted to say the same thing as Des yesterday, but I did not send it out. Anyway, just to be careful and picky. The 88 may be good enough if it is a true CC. However, it is from 24-urine collection only, I would be concerned.
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bountyhunter_ga
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Re: Got my lab tests back today!
«
Reply #15 on:
November 10, 2009, 07:13:48 AM »
I know how you all feel, My donor and I have been going through this same stuff over a year now. Emory Hospital pull the weight card after we where all finished testing just to keep the office visits going.
We fired Emory hospital after 10 months and went with Piedmont Hospital here in Atlanta. After less than 3 months both of us were finished retesting.
However my donor who is much better shape than me still needs to loose a little weight before we have a deal.
Now we are over a year and still waiting with a donor that is a match.
The most frustrating of all is the hippa laws that wont allow us the privilege of understanding each other's medical condition.
you and your donor are in this together until the end but not by the laws of the land.
We must change the way the medical field looks at transplant victim's and their donor as a family if they want to.
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Bountyhunter_ga
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