I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Lillupie on April 03, 2010, 09:23:40 PM

Title: How long did you wait until your first kidney transplant?
Post by: Lillupie on April 03, 2010, 09:23:40 PM
I am trying to see how long other patients have to wait until they got a transplant and I have been waiting close to 3 years now.

Lisa







TOPIC MOVED to appropriate section - Bajanne, Moderator
Title: Re: How long did you wait until your first kidney transplant?
Post by: jbeany on April 03, 2010, 09:48:44 PM
It varies depending on location, from what I've read.  I was told 3-1/2 years for a kidney/panc transplant was the average wait in Michigan.  I was D for 3 yrs and 8 months, but I didn't get approved for the list until I had been on D for almost 3 months, so it was just about as close to what they told me to expect as I could get.  The kidney/panc list is actually a shorter wait than the kidney list, so that helped.
Title: Re: How long did you wait until your first kidney transplant?
Post by: Wallyz on April 03, 2010, 10:42:37 PM
Just over a year.  I was on D for 2 1/2, but I had to wait for a year before the insurance would allow me to get on the list, than there was a couple months after that expired before they could get me processed onto the list.
Title: Re: How long did you wait until your first kidney transplant?
Post by: okarol on April 03, 2010, 11:09:46 PM
If you're talking about deceased donor kidneys the wait time depends on location, length of time since listed and tissue match, so it can vary quite a bit. The average wait time in Los Angeles is 6 - 8 years now, but if you bring a living donor then obviously it depends on how quickly the evaluation process takes.
Title: Re: How long did you wait until your first kidney transplant?
Post by: Chris on April 03, 2010, 11:53:49 PM
For me I was on dialysis for a year and 5 months. I was first on the list for a kidney then put on the list for a kidney and pancreas transplant which comes out to be less than a year.I also found out it varies by location which upset Wisconsin Governor at one time because more organs where going to out of state residents than in state. It didn't work out what the governor wanted to do.
Title: Re: How long did you wait until your first kidney transplant?
Post by: lou on April 04, 2010, 03:42:40 AM
I had my kidney transplant from a deceased donor last month. I was on dialysis for 6 months but had been on the list for 18 months. Here in the UK they say the average wait is around 3 years on the list so I know I was very lucky to get the call after only 18 months. x x
Title: Re: How long did you wait until your first kidney transplant?
Post by: *kana* on April 05, 2010, 08:12:03 AM
They say 3-5 years for us O+ people.  Have you considered duel listing in Ohio?  They don't have a helmet law so the wait is shorter.  My sister got her O+ kidney after only 4 mths on the list, and she has very high antibodies.  Her neph kept telling her that she would probably have a kidney within 1-1/2 years, but my neph tells me I'll have to wait 5 years or so.  I don't understand that since my antibodies are much lower then hers.  Oh well, we must just wait and learn the lesson we are meant to know before getting the "gift". 
Oh yeah, and my sister complains that she can't have grapefruit, mushrooms and shellfish because of her transplant and she expects me to fee sorry for her ...... :banghead;   I sometimes wish she had to deal with D before getting a transplant so she'd understand my agony. 
Title: Re: How long did you wait until your first kidney transplant?
Post by: paris on April 05, 2010, 08:18:41 AM
Been listed over 4 years.  Waiting............
Title: Re: How long did you wait until your first kidney transplant?
Post by: Stacy Without An E on April 05, 2010, 11:12:26 AM
My first two kidney transplants were less than a year because I had living donors.  The latest wait has been excruciating.  I'm O- with common genetic markers and its 6+ years and counting.  I'm very surprised at the variety of wait times across the country.  Although UCSF is one of the best transplant hospitals in the country, they told me 5-8 years at the orientation meeting all those years ago.
Title: Re: How long did you wait until your first kidney transplant?
Post by: jennyc on April 06, 2010, 01:22:42 AM
7 years. No one capable in family of donating. Had some half hearted offers over the years but i never really got too excited about the prospect becuase i understand how people want to help but then get scared when they really sit down and think about it.

The ironic thing is that i had the transplant 7 years and 13 days after i suffered acute failure and the same Dr who put in my PD cath (2nd time) is now a transplant Dr and he did my surgery.

I also had a tissue typing issue, hence the longer wait (rare tissue type so my kidney is only a blood match)
Title: Re: How long did you wait until your first kidney transplant?
Post by: hotnspicyazgirl on April 06, 2010, 04:30:44 AM
I was the second shortest wait in the state of Arizona....at the time. It was 1989, and I waited 2 days for a cadaver donor. I am blessed for sure.
Title: Re: How long did you wait until your first kidney transplant?
Post by: Beth35 on April 06, 2010, 06:37:52 PM
I waited five years on dialysis for a kidney.  I am B+ and they say it is the rarer of the blood types.  I think four out of 100 people have B+.

Now that I will be going for my second transplant, who knows how long it will take.  My brother is willing to give his kidney for the swapping program they have.  Share/Pair I think it's called.
Title: Re: How long did you wait until your first kidney transplant?
Post by: mike22 on April 06, 2010, 06:45:35 PM
I waited for my first kidney for 8 months. It lasted 8yrs.  Now im waiting for my second kidney on two waiting list. My blood type is also B+
Title: Re: How long did you wait until your first kidney transplant?
Post by: kellyt on April 07, 2010, 03:18:39 PM
I was fortunate enough to have never started dialysis.  I was, however, on an "any day now" schedule for dialysis, but fortunately my sis-in-law was accepted after they denied my first three donors tested.  I pray this is the only kidney I'll every need.   :pray;
Title: Re: How long did you wait until your first kidney transplant?
Post by: rookiegirl on April 08, 2010, 11:24:03 PM
I was 7 months into PD before I made it on the kidney waiting list.  10 months after being on the list, God answered my prayers and I received my cadaver kidney.
Title: Re: How long did you wait until your first kidney transplant?
Post by: Tracy on April 09, 2010, 11:03:17 AM
I was on the waiting list 3 days when I got my K/P transplant.  They failed 5 days later and then were removed.  I have been waiting 1 1/2 years so far for another one.  I'm in DFW, Texas area.  I think they didn't do a thorough match on the organs as they said it was the worst rejection they have ever seen.
Title: Re: How long did you wait until your first kidney transplant?
Post by: Mizar on April 09, 2010, 05:13:47 PM

 My Husband, has been on Dialysis, for Two and a Half Years. His Decision, has been, not to even, Apply, for a Transplant. He gives no Reason why.
Title: Re: How long did you wait until your first kidney transplant?
Post by: kitkatz on April 11, 2010, 08:02:48 PM
California wait lists are often up to eight years long or longer, depending on where you are located.
Title: Re: How long did you wait until your first kidney transplant?
Post by: The Noob on June 01, 2010, 05:01:40 PM
we're in michigan also, were told the wait list is 4-7 years? just called place in WV, said 2-3 years for A+/
we're going to get DH on both lists.
Title: Re: How long did you wait until your first kidney transplant?
Post by: Dragonette on June 01, 2010, 07:40:21 PM
They say 3-5 years for us O+ people.  Have you considered duel listing in Ohio?  They don't have a helmet law so the wait is shorter.  My sister got her O+ kidney after only 4 mths on the list, and she has very high antibodies.  Her neph kept telling her that she would probably have a kidney within 1-1/2 years, but my neph tells me I'll have to wait 5 years or so.  I don't understand that since my antibodies are much lower then hers.  Oh well, we must just wait and learn the lesson we are meant to know before getting the "gift". 
Oh yeah, and my sister complains that she can't have grapefruit, mushrooms and shellfish because of her transplant and she expects me to fee sorry for her ...... :banghead;   I sometimes wish she had to deal with D before getting a transplant so she'd understand my agony.

The wait is NOT shorter in Ohio, at least not for us poor unfortunate souls with Medicaid/Medicare. I am a B+ with no antibodies or co-morbid conditions, and I waited nearly 5 years, with 34 months on Dialysis.  Some say it is due to the kind of insurance you have,but I cannot prove this.  And as for your sister's complaints about what she canoot eat, it's a helluva lot less restrictive than the renal diet, I'll tell her that. I would have given my right arm to have only a 4 month wait. Tell her to stop snivellin'! I can't eat or drink certain things myself because of transplant and you don't see me crying. Oh yeah, and I'm still on home health care, but you don't see me whimpering like a kicked puppy. Some people have no gratitude, I guess
Title: Re: How long did you wait until your first kidney transplant?
Post by: Stoday on June 02, 2010, 06:38:28 AM
I got this from a UK NHS document. I thought it might help you.

Data from the Renal Registry shows that a
large proportion of patients currently wait
6-12 months after starting dialysis before
being listed for transplantation. Fewer
than 40% of dialysis patients are on the
national transplant list (UK Renal
Registry, 2006)
Title: Re: How long did you wait until your first kidney transplant?
Post by: kevno on June 02, 2010, 03:24:09 PM
Started dialysis in Jan 77 had my transplant Nov 11th 1981. So nearly 5 years. lasted till May 88  :waving; still waiting  22 years for 2nd  :banghead; Which now told my veins are too thin to have another transplant.  :sarcasm; But will not let it get me down   :boxing;
Title: Re: How long did you wait until your first kidney transplant?
Post by: Ang on June 02, 2010, 07:45:51 PM
still  waiting  after  4  years

told  by  the  head  honcho  from  the  transplant  team  if  i  get  my  bp  issues  fixed  anytime  in  the  next  18  months  as i'm  on  the  top  of  the  list  or  very  near

last  6  weeks  we've  had 6 transplants  from  the  1  dialysis  unit
whats  the odds
Title: Re: How long did you wait until your first kidney transplant?
Post by: staceyand joe92 on June 02, 2010, 07:57:56 PM
I was on dialysis for 15 months and on the transplant list for 13 months when I received my kidney transplant.
Title: Re: How long did you wait until your first kidney transplant?
Post by: Meinuk on June 02, 2010, 07:58:02 PM
UNOS listed when my GFR was 20% in June 2005 (St Luke's, NYC)

Dialysis in Jan 2007

First call for kidney Summer 2008

Second call and transplant, November 2, 2008.

Total wait time:   a month under 3.5 years
Title: Re: How long did you wait until your first kidney transplant?
Post by: RichardMEL on June 03, 2010, 09:17:36 PM
still  waiting  after  4  years

told  by  the  head  honcho  from  the  transplant  team  if  i  get  my  bp  issues  fixed  anytime  in  the  next  18  months  as i'm  on  the  top  of  the  list  or  very  near

last  6  weeks  we've  had 6 transplants  from  the  1  dialysis  unit
whats  the odds

That's interesting Ang - around the start of this year there were a rash of transplants from Sandringham - my nurses were joking that they should transfer me there. Sounds like they come and go in waves.

Hopefully ours will be soon! Good luck with the BP issues! That almost suggests that if you are having some that maybe they're not considering you for tx at this moment? What's with that? Have they put you into hold or something while sorting that out? I've never had BP mentioned to me as an issue that could affect potential transplantation (I'm on light meds though and it's pretty well controlled).

Title: Re: How long did you wait until your first kidney transplant?
Post by: skyedogrocks on June 07, 2010, 06:56:25 AM
Rob was on dialysis for 3 1/2 years before he received his living donor kidney.  He was listed a few months before he started dialysis.  Average wait time for his O blood type here in Massachusetts is 5-7 years.  He received 1 call 2 years after he was listed and never called again.

It definitely depends on your blood, tissue type and # of antibodies.

Not sure why one member's sister has to avoid mushrooms & shell fish after transplant.  Rob was never told this, is that true??
Title: Re: How long did you wait until your first kidney transplant?
Post by: Dragonette on June 17, 2010, 01:31:31 PM
Rob was on dialysis for 3 1/2 years before he received his living donor kidney.  He was listed a few months before he started dialysis.  Average wait time for his O blood type here in Massachusetts is 5-7 years.  He received 1 call 2 years after he was listed and never called again.

It definitely depends on your blood, tissue type and # of antibodies.

Not sure why one member's sister has to avoid mushrooms & shell fish after transplant.  Rob was never told this, is that true??

Maybe this person was on meds that those foods interacted with. Who knows?
Title: Re: How long did you wait until your first kidney transplant?
Post by: -Lady Noir- on June 17, 2010, 03:55:22 PM
Mikes been on the list over 4 years now... still waiting.
His Mum has been doing the tests to be a donor for a year & a half. Slack Nz system!!
Title: Re: How long did you wait until your first kidney transplant?
Post by: bette1 on June 25, 2010, 02:34:28 PM
I waited about 2 years for my first kidney transplant in Chicago.  I have O- blood.  I was double listed at the time in Illinois and Wisconsin.  I actually got the call first in Illinois, but it didn't work out.  I got the transplant in Wisconsin.

I waited three years for the second transplant and was again double listed and got a kidney in Wisconsin.  The Governor of Wisconsin must hate me. ;)
Title: Re: How long did you wait until your first kidney transplant?
Post by: murf on June 25, 2010, 04:51:51 PM
Been waiting about five years. Could someone please tell me what blood groups are hardest to match for a transplant. I'm O+. TIA.
Title: Re: How long did you wait until your first kidney transplant?
Post by: okarol on June 25, 2010, 08:54:03 PM
O is the most common blood type, therefore it is the largest group of patients waiting for organs.

A recipient with blood type O can receive a kidney only from a donor with blood type O. A recipient with blood type A may receive a kidney from a recipient with blood type O or A and a recipient with blood type B can receive a kidney from a donor with blood type O or B. A recipient with blood type AB can receive a kidney from a person of any blood type.
Title: Re: How long did you wait until your first kidney transplant?
Post by: Lillupie on June 27, 2010, 08:17:57 AM
Been waiting about five years. Could someone please tell me what blood groups are hardest to match for a transplant. I'm O+. TIA.

I am O+ too. They say that is the longest wait because over 50% of the population is  O+, that many more people waiting for the same kidney.
Lisa
Title: Re: How long did you wait until your first kidney transplant?
Post by: Des on June 28, 2010, 03:06:23 AM
and the O is a universal donor so... the O kidneys are proratally given to the other bloodgroups.
Title: Re: How long did you wait until your first kidney transplant?
Post by: okarol on August 06, 2010, 12:41:52 AM
In the US, the rules are that "O" kidney and "B" kidneys must go to their blood types.

Of course, with living donation, there is no restriction.
Title: Re: How long did you wait until your first kidney transplant?
Post by: Jie on August 06, 2010, 08:33:45 PM
In the US, the rules are that "O" kidney and "B" kidneys must go to their blood types.

Of course, with living donation, there is no restriction.

The exception to this rule is the 6/6 match. A 6/6 match O kidney can go to other blood types.
Title: Re: How long did you wait until your first kidney transplant?
Post by: -Lady Noir- on August 07, 2010, 04:55:16 PM
A recipient with blood type O can receive a kidney only from a donor with blood type O.

Mikes Dad is blood type A, and Mike is blood type O.. yet they still completed all the tests for his Dad to be a donor. I don't get it!
Title: Re: How long did you wait until your first kidney transplant?
Post by: Dragonette on August 08, 2010, 11:48:31 AM
A recipient with blood type O can receive a kidney only from a donor with blood type O.

Mikes Dad is blood type A, and Mike is blood type O.. yet they still completed all the tests for his Dad to be a donor. I don't get it!

Maybe they were hoping for an ABO incompatible transplant..I don't know.
Title: Re: How long did you wait until your first kidney transplant?
Post by: -Lady Noir- on August 08, 2010, 04:27:05 PM
Eek what on earth is that??  :lol;

Hahaha... i hate Fred Durst too  :2thumbsup;
Title: Re: How long did you wait until your first kidney transplant?
Post by: Dragonette on August 08, 2010, 07:52:14 PM
Eek what on earth is that??  :lol;

Hahaha... i hate Fred Durst too  :2thumbsup;

Go here http://www.abokidneytransplant.com/ (http://www.abokidneytransplant.com/) to find out more as I really don't know how to describe it to you.

And we all know that you :guitar: Fred Durst, don't lie lol.
Title: Re: How long did you wait until your first kidney transplant?
Post by: -Lady Noir- on August 08, 2010, 10:16:17 PM
 :sarcasm;

 8)
Title: Re: How long did you wait until your first kidney transplant?
Post by: huldafolk on September 02, 2010, 09:44:33 AM
Waiting 7 years for O+ in Manitoba Canada.  Had two calls in past 2 years. no call for about one year.  Told I am at top of list.but still see people disappear out of D getting transplants before me, can't all be other blood groups can they.  Small population in all of Manitoba(1Mil.) so odds are low each year for donors. :Kit n Stik;