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Author Topic: How long have you had to wait for a transplant?  (Read 3841 times)
Cordelia
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« on: April 11, 2011, 09:18:49 AM »

Hi, I'm from Ontario, Canada. I'm currently on dialysis, been doing this since August of 2010.

I'm just wondering for people who have had a kidney transplant in the U.S, how long did you have to wait for your transplant from the time you started your testing to the time you receieved a transplant?

I'm just curious to see the difference between the countries to see if the wait time is as long as it is in Canada where I'm from.

I know everyone's answers will likely vary, but I'm just curious. :)
« Last Edit: April 11, 2011, 10:09:38 AM by Cordelia » Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
bette1
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« Reply #1 on: April 11, 2011, 10:29:31 AM »

The wait can very a lot.  I am type o negative.  I waited two years for the kidney I received in 1994, and I waited about 3 1/2 years for the kidney I got in 2010.  Wait times can be long in the US. 

I don't believe that there is an age cut off here.  Is there one in Canada? 
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
Elvis
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« Reply #2 on: April 11, 2011, 10:37:12 AM »

It varies from different areas. I was on two list in the states before I got called. I moved my Dialysis time from one hospital to another and it put me on the top of the list. I was on PD for about 3 and 1/2 years. it was tough but I did it. God was beside me evertime I hooked up to the cycler. Without him nothing is possible. Again after I moved to the new list I got the magic call about a month later after all of the test were run again.That was the bad part. If I could get my knees and legs back  in order I would feel 100% better. That is a real probelm for me right now. God willing I will get through this too.
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Cordelia
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« Reply #3 on: April 11, 2011, 12:26:11 PM »

It's interesting to hear one another's stories. :grouphug;
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Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
willowtreewren
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« Reply #4 on: April 11, 2011, 12:37:18 PM »

My husband went on the list in May of 2008 and got his kidney in February 2011. The average wait for him was listed as 5 years.

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. :)
Ang
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« Reply #5 on: April 11, 2011, 07:55:29 PM »

about 4.5 years from dialysis to transplant,about the average for australia
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live  life  to  the  full  and you won't  die  wondering
okarol
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« Reply #6 on: April 11, 2011, 09:29:35 PM »


In Los Angeles, when Jenna first started dialysis, the wait for a deceased donor kidney was 4 to 6 years. (2004)
One year later the wait was 5 to 7 years.
She got a transplant from a living donor after 3 years on dialysis. (2007)
She has had that kidney just over 4 years, but after rejection episode 15 months ago, she only has 17% function, and will need another kidney.
The wait time in los Angeles now is 10 years. (2011)
We hope a living donor will come through.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
lou
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« Reply #7 on: April 12, 2011, 02:04:30 AM »

In the UK I was told the wait is around 2 - 3 years. I was very lucky as was on the list for about 18 months and dialysis for 6 months of that.
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Sax-O-Trix
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« Reply #8 on: April 12, 2011, 04:02:02 AM »


For a preemptive living donor, it took me 14 months from the very beginning to the transplant.  Scheduling the tests in a timely fashion was the biggest obstacle (two potential donors).  I almost had to have some tests done again because it had been over a year since I started the testing.  I was listed with UNOS for 6 months at the same time we were testing the live donors.
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Preemptive transplant recipient, living donor (brother)- March 2011
WishIKnew
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« Reply #9 on: April 12, 2011, 07:10:37 AM »

I've been listed for three years - the wait time for O+ here in NE Ohio is 5-7 years.  I've had and do have a number of friends and relatives try/ing to be living donors.  No matches yet, but always hopeful!
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RightSide
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« Reply #10 on: April 12, 2011, 07:43:34 AM »

Here in the U.S., the wait for a cadaver transplant can vary tremendously, depending on your blood type and tissue type.

My blood type is AB, so my wait time was shorter than average.  I believe I waited around 18 or 19 months.

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bette1
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« Reply #11 on: April 12, 2011, 08:33:15 AM »

I was shocked by the difference in wait times that I experienced in 1994 and 2010.  In '94 the average wait time in Chicago for type O was 3 years and now it's 6 years.  They say that the difference is due to an aging population and the rise in diabeties.   

I was double listed both times and got my kidney in Wisconsin, one state over, where the wait times are shorter.
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #12 on: April 12, 2011, 09:56:28 AM »


In Los Angeles, when Jenna first started dialysis, the wait for a deceased donor kidney was 4 to 6 years. (2004)
One year later the wait was 5 to 7 years.
She got a transplant from a living donor after 3 years on dialysis. (2007)
She has had that kidney just over 4 years, but after rejection episode 15 months ago, she only has 17% function, and will need another kidney.
The wait time in los Angeles now is 10 years. (2011)
We hope a living donor will come through.

I should have added that Jenna is O blood type (the + and - do not matter in organ transplants) and O's are the largest population waiting as they can only receive from O donors (unless they get treatments for ABO non-matching transplants.)
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Jie
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« Reply #13 on: April 12, 2011, 11:34:59 AM »

We have constant increase of patients on the waiting lists over time, while the donor population does not increase much, so the waiting times increase every year. With more safety cars in the road now, there will be less donors resulted from auto accidents. Another 10 years, unless there are break through on the artificial kidneys, there will be a lot more deaths from the waiting lists than getting transplants. 
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Cordelia
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« Reply #14 on: April 12, 2011, 03:08:22 PM »

Here in Canada, waiting for a cadaver kidney can be years-up to 7 years. With a living donor, it can be much shorter than that. It has taken me 8 months to even begin the testing process. My living donor (my husband) it has taken the same amount of time waiting for testing to even begin for him to see if he's a match for me.
Logged

Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
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