IamA Anonymous Kidney Donor from Canada AMA!

'For safety reasons I'll never meet them - is this in case you want it back?

Congratulations though, very honourable thing you have done and im sure whoever has the kidney is thankful.

Sort of..

There have been stories of donors harassing the recipient for money or if the donor thinks the recipient isn't living a healthy lifestyle.

Also goes both ways though, some recipients will harass the donor with their thanks when the donor just wants to do a good deed without the praise.

Personally, I want to meet my person but I respect the rules and that's that.

I think it's more like if something goes wrong, sorry to be gloomy but that's what i think , though that is a Brave move kudos on you for doing it, wishing you many healthy happy years to go !

I definitely think that's a big part of it.

Not gloomy, they probably have a suite of health issues, that's just the reality.

As a Chronic Kidney Disease Stage 3 patient, I want to thank you sincerely for giving someone a chance at life. It’s unlikely I will be a candidate for donor surgery (other issues) but selfless individuals like you provide hope to patients and their families. I forgot to ask a question... whoops! Why did you decide to be a living donor as opposed to donating after death? And to add further, would you also consider donating after death?

I'm sorry to hear about your health :(

I genuinely don't know what prompted me, I don't know anyone personally with kidney disease. I've been donating blood for years (more than 30 times) and I just never felt it was enough, so I looked for bigger ways to help and found this.

I'm 100% committed to donating after death and am excited to help even more people.

First off you’re a hero and thank you for being so generous. I was born with only one kidney, but everything worked out fine for me.

Secondly, do they pay you for your time you have to take off work and other expenses, or do you have to prepare for all of those things ahead of time?

That's cool! Most people can live a regular life with only 1 kidney.

My expenses were basically nothing, I think I paid maybe $15 for parking and a couple of coffees from trips to the hospital.

Insurance paid for 6 weeks of paid leave with a cap of $5k. The hospital works with you to deal with all of it, it's really easy.

With it seeming to be this easy I’m surprised that more people don’t do it too. I’m sure pain must be a factor but knowing you’ve saved a life must be indescribable and ultimately worth it. It’s amazing of you

I'm sure it's a more selfish reason - only having one remaining kidney means that if it fails, you're at a major risk, rather than waiting for a transfer (if even possible with only one kidney?)

They bump you to the top of the list. (My understanding is that a parent/sibling is ALSO bumped to the top if you're not eligible to donate, because you clearly would have). People live a long time with very little kidney function, they just need regular dialysis, so it's a possibility.

In Canada family isn't bumped to the top of the list, only the donor.

Didn't you worry a family member might need one later?

Yes and no.

No because my family doesn't have a history of kidney disease and we're all pretty healthy individuals. Yes because there's always a chance. It's a little self-serving but I'm willing to gamble that chance.

How's it self serving? Were you paid?

No, you aren't allowed to be compensated in any way if you choose to donate.

I just meant it was self-serving by donating instead of not donating and having the kidney around for them potentially.

I was under the impression that donating an organ put you higher up on the list for receiving one in return if you ever need it - is this true? Could you trade that slot to someone else?

Yes and no.

I got priority if something ever happens to me, but I can't give that privilege to anyone else (not my spouse, children, etc).

Was it your provincial insurance covering your wages or your employer?

Employer!

They gave me 6 weeks paid medical leave!

I have wanted to do this for a long time but I’m a single mom so I struggled with the money factor for being off work. You mentioned insurance pays 6 weeks off work? Is this private insurance or Msp?

Private insurance through my work, not sure how/if it works with MSP.

Wow - that's an amazingly generous gift. Great job on being what the evidence suggests is a pretty fantastic and selfless human.

You seem to have mastered one of the traits I admire the most: you're someone whose actions match their convictions.

Do you have any advice that could help people learn to live by their own convictions, and be more true to their ideals?

Good luck with the recovery, and I hope your kidney and it's recipient are doing great too!

Wow! That's really high praise, thank you so much!

finding people that support your decisions no matter how small was the biggest encouragement for me, I wouldn't have done this if family and friends didn't encourage me.

The first thing to surgeon told me was that the recipient's body accepted the kidney :)

I am considering donating a kidney to a family member and have a lot of questions! How did you prepare for the procedure (both physically and mentally)? How will your diet and lifestyle need to change? How has recovery been so far? Any regrets? Any surprises you weren’t prepared for? Things you wish you knew before you committed to this?

Edit: thank you so much for your selfless act of heroism. The idea that a kind stranger like yourself could save the life of someone whose family loves and needs them to keep living is beyond amazing.

I spent over a year mentally preparing for this, from when I decided to do this to when it actually happened. Physically, I'm already in relatively healthy shape so that was no problem.

Diet and lifestyle are almost no longterm changes, I can't play contact sports and but never did anyways. I also have to be careful of what drugs/medication I take since some do stuff in the kidney and that can be an issue, but I have friends who are pharmacists and they're happy to help.

Recovery was fine, The first 2 days were constant pain and the pain-killers really helped but after that I was able to walk and 2 weeks later I can do anything except exercise.

No surprises, the staff was annoying thorough. They would tell me everything 3 times to make sure I understood. Only thing, I handled the pain a lot better than I expected which I'm proud of.

Nothing I wish I knew before committing, they were unbelievably thorough.

I had actually looked into anonymous kidney donation but as someone with chronic headaches I don’t know if I could live without ibuprofen. I literally always have it with me. Are there any other drugs you can’t take after donating a kidney?

Congratulations on considering being a donor!

If donating causes you any pain in any way, don't do it. Throughout the entire process, the staff always explained that the donor is the absolute highest priority and as such, you need to be taken care of the most.

You actually inspired me to check out the list since I didn't know all of them:

Aspirin, Ibuprofen, things that treat heartburn, acid reflux, ulcers, and some anti-biotics

Tylenol is perfectly fine

I can't play contact sports

Why?

Besides this, do you feel/see the "depression"/hole where the kidney was taken of?

I think it's called Acute Kidney Injury.. and I'm guessing the doctors just want to be overly safe, doesn't bother me though, that stuff isn't for me.

There's sort of a sunken area on my stomach where the kidney used to be, I think it'll eventually fill out but right now it's not even.

How difficult were the psychological questions they had? I've looked into the process before and it seems they only want people who are doing it for the right reasons and state of mind.

Not very hard!

I spent a few hours with a psychiatrist talking about why decided to donate, if I had suicidal thoughts, my family and romantic relationships, etc.

She was friendly!

That’s awesome! I’ve planned on being a partial liver donor for a few years but I’m going to wait until I’m older.

Do you worry about permanent effects that could negatively impact your health? Like if (God forbid) something happens that is bad for the kidneys and you are at a disadvantage because you don’t have a backup? Or you aren’t able to filter something in your blood good enough because there’s only one? One of the reasons I want to donate part of my liver is because it will regenerate eventually but I’m interested in hearing your thoughts?

wow! That's a really brave thing to do! Congratulations!

I genuinely don't worry about the permanent effects. From all the tests I had to do, I'm statistically more likely to live longer than the average Canadian even with the missing kidney. I also did it while I'm younger (26) so that my body is able to heal faster. The hospital has conditions where if something does happen to me and I need a kidney, I get priority which, I hope never happens.

Liver donation is so cool! They can regenerate almost fully! I heard liver is a longer stay in the hospital and recovery. I thought about donating my liver but the way kidney pair donation (KPD) works is that I was able to help more people by giving a kidney.

A solo kidney works at 60-70% max function, where 2 kidneys work at 100% and the doctors say that 60% is enough to keep anyone healthy. I'll be bringing a water bottle with me more often though, haha!

I read that your expenses were covered. But did you in general get paid for it or have you done it for free?

How did the matching happen? Who found that you would fit and approached you? Maybe a silly question but I have no idea of it...

Don't you think it is a bit risky to publish your photo and the donation date while there are only 15 people doing this per year and it should stay anonymous?

No. Canada is very, very strict with the rules that the donor will not be compensated in any way.

I reached out to the hospital network and they put all donors and recipients into an algorithm to find as many matches as possible. If you check out the proof album I have an infographic that sort of explains it? If it doesn't I can try harder.

I mean, a face doesn't really do anything - they need a name/hospital/etc. My donor doesn't know anything about me. If he/she/they see this they see someone donated but they don't know who their person is, not my age/race/gender/etc. There's 15 anonymous donors per year, but there's another 80 people that donate to other people to help their person (it's complicated, sort of like trading kidneys).

You are a hero, and also a mind-reader: I was just thinking about kidney donation yesterday evening!

To clarify, even considering organ donation (even upon my death) makes me feel all kinds of wrong I can't seem to put in to words right now.

I did, however, sign up for organ donation upon death after watching a compelling YouTube video some years ago. But all the same, just to think about donating any part of my body makes me very queasy.

I was wondering how it feels once you are fully healed and back at full strength; do you sense something is missing from inside? (Whether a physical absence or in a psychological sense.)

What sorts of pastimes many of us indulge in with reckless abandon, e.g. alcohol, drugs etc. are now off-limits for you?

Thanks!

You're brave for even considering it, and congrats on signing up for the death organ donation!

When I touch stomach I can feel that there's something physically missing; the left side of my stomach is a little smaller than the right. Psychologically, I don't miss it at all maybe that'll change, but I doubt it.

I can drink/smoke (those are the only drugs I use) just as much as before, I was told I could drink the day I left the hospital.

No contact sports. No advil (because of the way it breaks down in the kidney).

No contact sports? Ever or just for recovery period?

No contact sports ever.

I can't even run during the recovery period.

That's awesome! You're a hero. My husband has a rare genetic kidney disease. Right now he's fine and living a perfectly normal life - he takes like three different pills every day before bed and has to see a nephrologist every year for a checkup, but otherwise it doesn't affect his daily life at all. However they told us that it's likely he'll need a new kidney some day.

Sorry if this has been asked before, but what made you decide to do this?

I'm sorry to hear that.

I've given blood for several years (30+ times) and felt I wasn't doing enough. I started to look for other ways to help my community.. volunteering, joining groups, etc. Eventually I read about these people in need of organs and decided that this was how I could help!

You are a great homo sapiens and make the world a better place.

Have you ever wondered if your mystery donee now exhibits aspects of your personality?

I expect the recipient to slowly start growing a beard and play more Magic: The Gathering. Otherwise this will be a wasted experiment.

Hi, I have no words to describe how much I admire your generosity and thank you very much for doing this AMA.

I have been donating blood and I have had a strong urge to do something bigger like you. So, an anonymous donation is something that I've been considering since few months now. However, at the same time a small part of me wonders if I'll regret it in the future.

To be honest, I don't have any second thoughts about it to do it now but I would like to be mentally prepared and know how to deal with future me if in case I have to. I don't know if it makes any sense.

Did you feel this way? or Did you had any second thoughts? In either case, what helped you to sort out your thoughts?

You're describing my feelings perfectly.

It's like a pendulum the way my feelings would swing from terror to relentless pushing. Even the morning of surgery I was scared and anxious.

Ultimately I knew that it was what I wanted deep down - that always guided me. I spent over a year working for this, going to appointments and doing blood/urine tests. I did it for me, because I believed in what I was doing.

Aren't you worried about the long term increases to your health?

It's a little ignorant, but not really.

Obviously the surgery will have long term impacts on my health but based on all the tests (and there were a lot!) I'm in the top 1% of Canadians in terms of health. Statistically, organ donors live longer than non-organ donors.

So I may be giving a kidney to my dad. What do you regret about donating? Thanks for what you have done!

Congratulations! That's a really brave thing to even consider!

It's still recent, but I don't have any regrets right now. I'm a healthy person that eats well and exercises, we can't see the future but all the tests I've done say I should live a long and healthy life. I'm so proud of what I've done and don't have any regrets.

Saw this pretty late, so I'm not sure if you'll even see this.

As somebody with ADPKD who will need a new kidney in 2 or 3 decades, I just wanted to say thank you!

My dad got a transplant several years ago, with my uncle as the donor, and both of them are doing great.

Being an organ donor if the unexpected happens is great, but being a living donor for someone you don't know is fucking INCREDIBLE. So selfless.

How's the recovery? I know when my dad had his impacted kidney removed and then the replacement put in, he lost a lot of abdominal strength. Not sure if that was specific to his case, since the kidney that was removed was pretty severely deteriorated and much much larger than normal.

Thank you so much!

I've never heard of the kidney being removed or losing abdominal strength so I have to guess it's specific to him, glad they're doing well now!

Recovery is going great! I'm back to 95% health, and the last 5% is the ability to exercise. I feel like I have normal abdominal strength but I haven't had a chance to test that yet.

Does this create internal pressure for you to live a healthy lifestyle since you don't have a kidney to spare at this point?

Yes and no.

yes because I need to live with more awareness and caution which is something I struggle with. No because I don't do dangerous things and already live a healthy life, you need to be really healthy to donate in the first place.

Got it. How does your family feel about you donating your kidney? i.e. Did your spouse/parents approve?

You've done a wonderful thing here, by the way. I hope you get to meet your donee one day. Maybe you'll cross paths innocently and discover each other's true identity!

Family was the least supportive of (almost) anyone I told at first; they were mostly worried about my health, which is reasonable. They turned around and became huge supporters, my dad was with me in the hospital when I was recovering.

Haha, I hope so!

Simply wonderful.

Will this adversely affect your future years in any meaningful way?

The surgery will have long term impacts on my health but based on all the tests (and there were a lot!) I'm in the top 1% of Canadians in terms of health. Statistically, organ donors live longer than non-organ donors.

No contact sports, and careful around medication.

How long do you have to wait till you can exercise? And what kind of exercise/vigorous activity you must not do, even long after the operation?

Can't exercise for about 6 weeks.

After that I'm told that I shouldn't play contact sports.

How can you be anonymous? What if your kidney sees this and recognizes you? /s

Seriously, this is great. Real question: how much pain is there in donating?

It's been about 2 weeks since the operation and the only pain is when I move too fast, like light jogging.

The first day you can barely move and it's a constant 5-8/10 pain. It's also hard to concentrate on conversation, really the only thing to do is breathe. They provide as many pain-killers as any reasonable person could want, and it's genuinely scary how good they feel.

For about 2 weeks it's a constant 2/10 pain, which is really manageable.

Do you see yourself doing it again in the future?

I plan on giving a second, third, and maybe a fourth.

If you have one kidney can you only drink half of what you could drink?

That's the liver! I can drink like a fish!

The kidney loves liquid so I've been drinking like 4 liters of water a day, I almost live in the bathroom.

I’ll be doing this in October. Do you have any advice? Anything you didn’t expect due to the pandemic situation?

Holy shit! Congratulations!

You know, just do what the staff says and you'll be fine. When I was in pre-op, there was a patient arguing with the nurses because they ate/drank after their cut-off time. You recover faster then you expect, then slower than you expect.

No covid surprises for me, just quarantining as much as possible and wearing a mask as much as possible.

You’re probably not still answering questions, but in case you are: how incredibly healthy do you have to be? What tests did you have to take and “pass”? I was looking into this for a friend who needs a kidney, but my liver numbers are abnormally high and dr’s don’t have a diagnosis on it. I wonder if that would preclude me?

Very healthy!

Tests: 10+ blood, 3 urine, CT scan, x-rays, psychiatry, family medical health, and a covid swab.

If they don't know something, it generally precludes you. Here's hoping the doctors can figure it out!

What was your inspiration to do such a thing?

I used to donate blood (30+ times) and felt I wasn't doing enough. I found out about organ donation and decided to participate! Just trying to help people

Hi there!! What an amazing gift to give! I am recently approved to donate my kidney to my husband who is in end stage kidney failure. The surgery will be early next year. Can you give me a summary of the recovery afterwards? What to expect when waking up and the first few weeks afterwards?

Wow! Congratulations!

The recovery was faster and slower than I expected.

The first 3-5 hours were 8/10 pain, couldn't talk, couldn't listen, couldn't move. Only focus on breathing.

The next 20 hours went from 7/10 pain - 5/10 pain with occasional flairs of 8/10, could talk, could listen, couldn't move my torso, but could move my arms.

They ran tests every 2 hours and would wake me up at 2,4,6 am to take temperature, blood pressure, and heart rate.

By about hour 30 I could get up with help and walk - I was hunched over, and in pain, and each step was less than 6 inches.

The next 20 hours the pain went down to 2-4/10. I could get up on my own with a lot of effort.

The next 4 days I could walk and get up and move on my own but very very slowly, pain was 2/10.

It's been 2 weeks and I still can't jog but I'm living 95% normally (5% for the exercising).

Would you be eligible to receive a kidney from someone in the future if your remaining one has issues?

Good on you for doing this ... it’s scary to me but I applaud anyone that goes through with it for sure.

Yep, donating gives me (and only me) priority if anything ever happens.

The hospital does as much testing as possible to ensure that it's as unlikely as possible though.

Was that iPhone 6 worth it?

Nope, I did it to get off work for 6 weeks.

Heya!

I've been thinking about tissue donation a quite a bit lately.

Where can one go to sign up to be a tissue donor in Canada? Or should I just just google that....

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Looks like it varies by province!

https://www.canada.ca/en/public-health/services/healthy-living/blood-organ-tissue-donation.html#a2

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This is kind of a pain in the butt! I looks like there isn't a central registry at all but a registry per organ/tissue.

Congratulations on taking the first step!

Canada is annoying because each region/organ has their own systems. Mainly, because they don't want to fly you somewhere to donate (even though they do that sometimes) to someone you match with, and would prefer finding someone nearby.. I think.

Even if you only ever consider donating, that's a huge accomplishment!

Anyone can donate one kidney. Do you plan to donate a second? Sorry, I couldn't help myself. Thank you for your kindness and generosity.

When you said that the age of Canadian donors is typically 40-60, are you implying that it's a bad thing for that age group to do most of the donating?

Second, even third hopefully!

Now that I reread that line, it sort of does seem like I'm implying that.. While it is better to get a younger kidney, the biggest thing is being a living donor vs deceased. A kidney from a living donor will outperform deceased 9/10 times.

How did you convince yourself to step up? It must have taken a lot of courage.

I'd love to donate a kidney, but I made the mistake of watching a kidney transplant on TV. Also I could never afford the medical expenses, and heaven forbid if my other kidney failed.

Thanks! It's scary but I really felt it was the right thing to do, and that's what pushed me.

Other people have said in this post that in the USA, the recipient's insurance covers the whole cost. In Canada, I paid almost nothing in medical expenses.

What was the scariest part of the whole process? Did your family or anyone else try to say that you shouldn’t do it?

Scariest part for me was getting wheeled into the OR. I was laying flat down and could only see the generic white ceiling. Once in the OR I felt calm and 2 minutes later I was unconscious.

Family was the least supportive of (almost) anyone I told at first; they were mostly worried about my health, which is reasonable. They turned around and became huge supporters, my dad was with me in the hospital when I was recovering.

What's your favourite potato based dish?

I'm Canadian, and legally obligated to say poutine.

Thanks for doing this, both donating and taking the time to answer our questions!

My friends mom had a kidney transplant a few years ago. Before that I didn’t realize they don’t remove the damaged kidney from the recipient.

It sounds like your team thoroughly explained the procedure to you. Did they also explain what the procedure would be for the recipient?

I've heard some people have like 5 kidneys in them. There's gotta be a limit but idk what it is.

They explained it briefly, I know the recipient is in the hospital longer than me and will most likely need medication for the rest of their lives. The body may try to fight the new kidney and kill it, hence the meds. They swell up with like 10-20 lbs of water weight for a day or 2. Their scar(s) are way bigger and in more visible spots.

I didn't really need to learn about their stuff so I didn't, maybe I should have.

Wow this is absolutely the most courageous thing I’ve heard in a long while!

What was the selection/matching process like? Do you know how they matched you with your recipient? I’ve always been lead to believe that it’s a matter of blood type but I’m not entirely sure!

It's complicated but an algorithm picks my recipient based on compatibility. Blood type, cell similarity (whatever that is), immune system reactions my cells.

As far as my activity during the matching, it was 0.

Blood-type is the most important one, but if the other conditions are bad then it's a no.

Hey thanks for doing that it’s trily a great sacrifice. I’m a canadian and have always wanted to do that. I registered through OneMatch to be a donor but how do i go About donating a Kidney?

OneMatch is great! I got the swab too a few years ago, haven't gotten called yet!

Congratulations on considering being a donor! All depends on what province you're in, they all have the same but different services.

https://www.blood.ca/en/organs-issues/living-donation/kidney-paired-donation-program

This page has all the contact information you need!

As someone who will probably need a kidney in the future (stupid genetic diseases), I just want to say you're awesome! It's comforting to know there are selfless people out there.

I'm curious, in the US if you're a live donor and end up needing a kidney yourself, you're immediately moved to the top of the list. Does Canada do anything similar?

You've done your research!

Yeah, it's top of the list in Canada too!

What's your name?

seniordoodle ;)

I'm sorry, but I don't feel comfortable giving that information.