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| | |-+  advise whether to be active on the list
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Author Topic: advise whether to be active on the list  (Read 215 times)
jenb
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« on: July 09, 2018, 06:22:05 PM »

I'm sort of confused.  I have been on the kidney transplant list for about 3 1/2 years inactive.  I have not started dialysis.  My gfr is about 11.  I feel great!  My doctor recently said I should go active.  I guess I am questioning why I would take a kidney at this point in my life if I am feeling good.  Does anyone have a suggestion on this?   I know a lot of you have been waiting and are in a lot more need of it then me.  My doctor said if we could get one before going on dialysis it would be better.  However, from what I have been reading here, it could be another year before I need dialysis.  When they do my transplant they will remove one kidney because of cysts there isn't room for three so I guess a little bit bigger deal than regular transplant.  Anyone experienced that?
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iolaire
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« Reply #1 on: July 09, 2018, 06:42:31 PM »

I would think that the healthier you are when receiving a transplant the better the odds for you post transplant recovery.  Especially if they are doing more major surgery to remove a kidney.  I was told to list prior to going on dialysis by a few years and still waited a full six years for a kidney.  I probably would suggest being active, you donít know how you will react to dialysis and for many itís a struggle. 

The best reason to wait for a transplant to me is to postpone the failure of the new kidney. Transplants last say 15 years on average so do you want say 2 of those years to have been easy pre-dialysis years? 
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Marilee
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Hubby's a PD Person - I'm 'support'

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« Reply #2 on: July 10, 2018, 07:34:18 AM »

Hi Jenb - I'm guessing that the doctor is seeing a trend in your lab work - not just this month's numbers, but all of them taken over time - and perhaps the trend shows a decline in progress that leads the doctor to think that timing is about right to go active. As Iolaire mentioned, just because you go active doesn't mean there's a donor kidney with your name on it - it can take several more years for your turn to come.
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As my hubby would say, "Don't let what you can't do get in the way of what you can."
MooseMom
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« Reply #3 on: July 10, 2018, 07:42:57 AM »

Following on from what Marilee said, you can be on the list and refuse a kidney if you are called.

The ideal is to be lucky enough to have a pre-emptive transplant.  The very process of dialysis is very stressful on the body, so being able to avoid it would keep you fitter for surgery.
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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."
cassandra
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When all else fails run in circles, shout loudly

« Reply #4 on: July 10, 2018, 08:49:54 AM »

I agree with all that's been said above. Go active!!


Love, luck and strength, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
jenb
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« Reply #5 on: July 13, 2018, 09:29:27 PM »

Thank you all for your advise.
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Simon Dog
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« Reply #6 on: July 14, 2018, 06:24:15 AM »

Learn about KDPI and activate.

If you get an offer for a really good kidney (what is really good depends on what you are eligible for based on your EPTS), go for it.   If you are offered a mediocre one, pass and wait for choice meat.
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