I just heard that one has to wait at least one year for the surgery although one has a living donor! Apparently that is to make sure the donor REALLY is sure they want to give a kidney… Shame for the recipient since they have to be on dialysis longer…
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Transplant Patient
I've never heard of this, nor can I find any Canadian sources to back this up. My living donor experience was with liver, but it was always an emphasis on moving potential donors through the evaluations as quickly as possible.
Do you know what province this was in, @Karin? That might make a difference, but it still sounds really odd to me. Everything I've found says average wait time in Canada with a living donor is only a few months as the evaluation process is completed.
@Aklowak do you know? I know you had experience with living kidney donation.
Here's some info from the official blood and organ transplant foundation in Canada on living kidney donation.
https://www.blood.ca/en/about-us/media/kidney-paired-donation/backgrounder-kidney-paired-donation-program
Transplant Patient
I’m not sure where your info is from, @Karin , but I just checked national stats for Canada and it says all patients with matches received surgery in under a year. Do you have sources for your info?
Transplant Patient
Yes - it came from a father of a girl to whom he wanted to donate a kidney and it took them over a year (there is no written law about this but centers keep dragging out the timeline on purpose to allow the donor to truly believe hunk about it). If you look at average time to living donor transplant from time of signing up or rather entering into the evaluation process in kidney you may find it… as a comp - NYU tries to do the process in less than one month! There are advantages w the US system sometimes …
Transplant Patient
I would love to hear from someone who has lived experience with this. I’m sure it does happen, I just can’t find anything about it nor have I known anyone in Canada who has had a similar experience.
i don’t think this can be taken as something that happens in every situation, and I don’t have the personal information from the people involved to know one way or another. I don’t believe this is just a one country problem, but a great talking point for in general why transplant centres and physicians are failing patients. No system is perfect, terrible things happen everywhere.
@fern22 @Berriosa1234 what are your thoughts?
Transplant Patient
Here is a good article describing the experience in different countries including Canada…
Hi, I received a living donor kidney just over a year ago- and I actually am aware of this policy- and it is not true for all of Canada. each health region has its own policy and this one was specifically for the Ontario health authority but is outdated and no longer in practice. you do have to have an interview with the surgeon and a social worker as part of your screening and they asked my husband several times if he was sure he wanted to do this and if he was being forced to do this- I am in the Alberta health region in Canada and once my husband had all of his screening completed (this took 3 months to complete) he was able to set a surgical date within 24 hours of learning he was a match. 2 weeks later on July 15th, 2022, I received my husband's kidney. he started the screening process on April 9th, 2022 with a phone call to my social worker.
I will also add this was during the push to eliminate covid back log so we where slowed down in the screening process it would usually be under 90 days for my province. but there where people ahead of us that had started the process
post Covid and had to wait for openings.
Transplant Patient
Thanks @Aklowak for sharing. I find it so valuable to divert to people with lived experience and authority in these areas, rather than just making assumptions. You explained this better than I ever could!
Interesting my experience with my transplant was different. My living donor was able to start her tx evaluation in february of 2007 and may of 2007 we had the date set for June 2007 for me to have the surgery. It apparently takes about a year or so to get through all of the testing i was told.so for her to be able to do it in 5 months is pretty impressive.
Transplant Patient
@AliEm14 i am not sure I was making assumptions )).
I shared an article from a peer reviewed journal, and had spoken w a father of a girl to whom he had given a kidney to…I do believe there is great variation across centers in the US and across the world… I also believe the US is excellent at specialty care where reimbursement is high, while Canada and Europe are excellent at preventive care. Pure economics….
Transplant Patient
@Aklowak thank you for sharing, and so good to hear your province had it down right! Sad for those w the “wait” policy though who get dialyzed longer…. and most importantly congrats to your transplant!
Transplant Patient
@Karin that statement was actually less about you and more about me.
personally I believe we all internet things through our own experiences and lens of seeing the world. In situations like this, I’ve found it’s very important for me to be aware of my privilege. I don’t have this lived experience. I have transplant experience, but my story is unique. I can read material, but that doesn’t translate to personal experience necessarily. So I’m trying to get into the practice of recognizing my privilege and defaulting to the authority of the people who have that lived experience, rather than making my own speculations
Transplant Patient
Thank you @AliEm14 and I think we all struggle w that! So easy to google and do research while everything is so individual and averages are just that / averages….
I am just now coming around to this discussion after @AliEm14 tagged me! Btw, Ali, the link you added about the canadian paired exchange, very helpful for me as I am having to learn a lot more about other countries policies and not just limiting my knowledge to the US. So, thank you! My immediate thought was that with living donation, I feel the longest part for the donor process is waiting to get results that are specific to the person you wish to donate too and then, if you are able to donate, trying to get the surgery scheduled based around the hospitals schedule and the donors.
Transplant Patient
Interesting - I feel the longest period was getting all the tests done and scheduled…. The actually matching was done fast in our case…