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Author Topic: Transplant evaluation  (Read 3551 times)
Kayholio
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« on: April 15, 2012, 11:36:34 AM »

Hey all. Good news, I go in 10 days to the transplant hospital for my evaluation. I'm kind of excited and nervous at the same time. I'm more nervous about how much blood they need. 20 tubes of blood sounds like a lot. Hopefully I don't pass out or get woozy. Good thing is, I'll have my most recent labs as I have to go to the clinic the 19th for my results, and I'll get to know how my PET test went :) Just thought I would share my experience with others :)
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December '99 : Diagnosed with kidney disease
September 15th '11 : Went into stage 5 ESRD
September 19th : Started hemo with permacath, PD cath inserted
September 28th : Started manual PD
November 9th '11: Started PD on cycler
jeannea
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« Reply #1 on: April 15, 2012, 12:40:01 PM »

When they took my blood for the evaluation, I walked out of there and almost threw up. It was so much. But the rest of the day was fine. Good luck!
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Chris
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« Reply #2 on: April 15, 2012, 04:20:06 PM »

It's not the number of tubes, it's how big some of those tubes are. Some are small, but some are like those small liquor bottles they have on an airplane.
 
Just don't look as they draw the blood, you'll be fine (er maybe in a few hours after the draw tho if you get whoozy). :P
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Kayholio
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« Reply #3 on: April 15, 2012, 04:40:53 PM »

I really have no problem when they take blood, I usually sit there and watch the blood go in the tube while they're doing it. But it just seems like they need so much x_x
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December '99 : Diagnosed with kidney disease
September 15th '11 : Went into stage 5 ESRD
September 19th : Started hemo with permacath, PD cath inserted
September 28th : Started manual PD
November 9th '11: Started PD on cycler
Chris
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« Reply #4 on: April 15, 2012, 07:47:27 PM »

Wait till post transplant, seems they take even more soon after surgery ::)
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
paris
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« Reply #5 on: April 16, 2012, 06:43:51 PM »

Chris is so right.  Non-ending blood draws!    The number of tubes they take at my transplant center is about the same amount as when you donate blood.  Pack a little snack  (because you will have been fasting), a bite of a sweet and a bottle of water.  Go back to the waiting room and just rest for a few minutes.  I laugh when others say "oh I know -- the last time I had 5 vials drawn"!  Oh please -- amatures!!  LOL  :rofl;   Hope it all goes well.   I look forward to reading how the evaluation goes. 
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Kayholio
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« Reply #6 on: April 20, 2012, 08:09:56 AM »

Hrm, I just got off the phone with the transplant hospital and they said I don't need to fast. I suppose I should probably still take something with me though.
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December '99 : Diagnosed with kidney disease
September 15th '11 : Went into stage 5 ESRD
September 19th : Started hemo with permacath, PD cath inserted
September 28th : Started manual PD
November 9th '11: Started PD on cycler
MooseMom
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« Reply #7 on: April 20, 2012, 09:53:20 AM »

There was never any talk of fasting when I went to my first eval at Rush.  When Madison sent me a letter confirming my appt next month, they specifically said that I would not be fasting but that the appointment would take 4 to 6 hours and that I might want to bring a snack along.  Alternatively, I could make use of the cafeteria.

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Kayholio
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« Reply #8 on: April 26, 2012, 05:48:10 AM »

So a little update. I went to my transplant evaluation yesterday and everything went pretty good. No major findings were found, at least for some of the blood work that came back. They had to take 14 tubes of blood, around tube 10 I started feeling lightheaded. They gave me some water and a damp paper towel to dab my face with, that seemed to help. I'll probably hear more about the tests and whatnot on Tuesday.

I think I'm closer to getting on the list. Now I just have to give people that want to be a live donor, the number for the lady at the hospital that takes care of that. :) Oh! And I don't have to do any fundraising \o/
« Last Edit: April 26, 2012, 05:52:36 AM by Kayholio » Logged

December '99 : Diagnosed with kidney disease
September 15th '11 : Went into stage 5 ESRD
September 19th : Started hemo with permacath, PD cath inserted
September 28th : Started manual PD
November 9th '11: Started PD on cycler
paris
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« Reply #9 on: April 26, 2012, 12:34:41 PM »

Surprised about the no fasting.  Some of the lab values are influenced without fasting.  Each transplant center seems to do things so different.   For the past 8 years, monthly I have had fasting lab draws and hold medicine until draws are done. That is why I always have early appointments.   Hmmm, curious.   

Good luck with everything Kayholio.  It will be a great day for you when you are listed and the potential donors get tested.    :2thumbsup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
jeannea
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« Reply #10 on: April 26, 2012, 12:35:03 PM »

Yeah 14 tubes sounds familiar. I didn't even know there were 2 separate tests for toxoplasmosis. It's incredible how much they want. Glad you survived.
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MooseMom
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« Reply #11 on: April 26, 2012, 01:07:33 PM »

Surprised about the no fasting.  Some of the lab values are influenced without fasting.  Each transplant center seems to do things so different.   For the past 8 years, monthly I have had fasting lab draws and hold medicine until draws are done. That is why I always have early appointments.   Hmmm, curious.   

Good luck with everything Kayholio.  It will be a great day for you when you are listed and the potential donors get tested.    :2thumbsup;

Now, I will say that when I get my regular labs done (every 2 -3 months), for THOSE I have to fast because my neph wants to check my blood sugars (which have never been abnormal).  I am assuming that this particular test isn't all that important to tx centers, and maybe THEY are assuming that this is regularly checked by my neph, anyway.  I know that tx labs test for different things that my regular labs don't check for, like hep and CMV and EB and TB and stuff like that, and you don't have to fast for those. 

I've been to three evals at Rush, and they yabber on at you for 3 hours and THEN get your blood, and if I'd had had to fast, I'd be incoherent by the time I had to actually give blood.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
Deanne
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« Reply #12 on: April 27, 2012, 07:28:18 AM »

I had to fast for mine, too. They divided the appointment across two days. The first day was for non-fasting stuff, then I had to fast (including nothing to drink after midnight) and had 20 tubes drawn first thing the next morning
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Sax-O-Trix
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« Reply #13 on: April 27, 2012, 04:10:32 PM »

Post transplant, I estimate I have had well over 200 tubes of blood drawn.  It's never ending.  I had to have weekly labs for the entire first year and then more when I landed in the hospital three times for rejection and infections.  I just spent three days in the hospital for my second UTI that traveled to the new kidney and made me very sick.  I HATE NEEDLES that's why I pushed for the preemptive transplant!  I just pray my children are grown and on their own when this kidney gives up the ghost because I really can't see myself getting stuck with 15 gauge needles...
« Last Edit: April 28, 2012, 03:52:39 AM by Sax-O-Trix » Logged

Preemptive transplant recipient, living donor (brother)- March 2011
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