IAmA person who donated their kidney 3 weeks ago, AMA

As a kidney transplant recipient*, I just have to say, THANKS!!!

*Not yours though.

how long ago was yours? my sister just had to go into hospital over that last few days, for increased creatinine levels and severe headaches. but just got the all clear from a biopsy that she is not rejecting it so far, and they just need to adjust the drugs. did you have any scary situations like that?

Hi,

I know your post about the transplant was quite awhile ago.. But I was hoping to ask a few more questions if you had a few minutes.

I'm debating being a live donor, and really want to, but I'm kinda scared of what my life will be like after the surgery. What if I develop kidney disease? What if something happens, essentially you would be just switching places with that person..

Did you go through this stage? My donation wouldn't be for a family member but for an old employee of mine that is just so young and has so much potential.

He doesn't know I'm considering even getting tested and I know the likelihood of me being a good match are unknown(we have the same blood type is all I know so far) but I want to go get completely tested to find out... But then again, I don't want to, because if I AM a GOOD match for him and I chicken out, that would be horrible for him.

Ugh idk. Did you experience any of this?

Thanks

James

First up, you are not a chicken, elective major surgery is not a joke, and should be thought about properly like you are doing now.

I'll try to answer your questions as best as I can and then ask you some questions.

If you are a healthy Individual, you will be just as likely to develop a kidney disorder (if not less so) than an average human being from your area. And even if you do develop a disorder having one or two won't make too much difference as most kidney diseases effect both kidneys. (If you get stabbed in your only kidney you have left, then I suppose it's just tough bananas)

I did go through it a little, as I said I was concerned about it all (most of all having a tube put in my bits while I was asleep, but as soon as I realised that stuff like that are just slight inconveniences then I was ready to go ahead.), but figure out what will be an inconvenience to you, you will have to take 3 months off and need a helper for the first two weeks out of surgery (my mum made me tea and biscuits when I was in bed), or if you lift weights, you will have to take at least 3 months off your routine. Just figure out what worries you, ask someone in the hospital to give you answers, and if it is too much then don't donate, it's your body and you can do what you want with it.

Also a good test about whether you want to donate would be if you knew that in the future that this guy wouldn't thank you and you would never see him again, and you would still want to give it to him because you really thing he is an awesome dude, then go for it. Would you still do it if no one knew that you did it?

Good plan, don't tell the person you are interested in donating unless you are certain that you will. I'm pretty sure that you can get tested in secret, and that way you won't let anyone down.

Please feel fee to ask more

Which kidney?

it was my left kidney, my right accounted for 55% of my total kidney function and my left the other 45%. My right kidney has an accessory artery (which means it has 2 arteries) and my left kidney only had 1, so they took my weak one out.

Did you know who it was going to?

went to my sister, it was a blood type incompatible transplant, meaning we were different blood groups, however out kidneys were very close genetically, they score out of 6 for matchiness, and we were 5/6.

did any unicorns operate on removing your kidney?

I was passed out, so I didn't see any unicorns operating on me, although I didn't see any unicorns not operating on me, therefore maybe. ಠ_ಠ bloody unicorns up to their tricks again

What was required post-surgery (like medications, etc)?

after surgery you wake up in a sort of recovery room, and are a bit dopey and you have a person check your vitals almost all the time. don't remember too much of this as they pump you full of morphine before you wake up and give you a buzzer to press that allows you to have intraveneous morphine every 5 minutes. then i got wheeled upstairs and put in a ward. at this point you are feeling okay, so i was making jokes and stuff, as was i for the next day while i was still on morphine. when they take you off, thats when things change. they put me on tramadol and paracetamol, but tramadol made me retch (which hurts like hell as they have cut your tummy muscles). so i got put on oxynorm (oxycodone) and codeine phosphate and paracetamol. even with them, the first week sucks. you can't really concentrate on anything and sleep only comes when you pass out from exhaustion

damn thats rough. youre one hell of a brother

it took about a week before i started feeling better. still at this point i couldn't really be bothered to read or do anything, but for some reason, i could watch extras, and that made me feel better. maybe i associated with the lead character (andy millman - ricky gervais) for being so hopeless and rubbish. and i sat there laughing away to extras, and that was the turning point. (i say laugh, not laughing as that hurt way too much, but breathing strangely in accordance with the witnessed hilarity)

-_-

all I see looking at your scars

oh and <3 for your sister :)

brilliant, i didn't even see that. you have made me see my body in a new way forever, you have ruined me

Do you feel different with one kidney? Tired, thirsty, in pain?

at the moment, the nerves next to where i was cut open are starting to grow back, so my stomach feels tingly and a bit sore. i am still quite tired at the moment, and need to pee more than usual, as i drink a lot more than i used to (actually i probably the normal amount now, before i only really drank when thirsty). pain, when i cough, laugh, cry, sneeze, hiccup (less so than when i got operated on, but still a little bit). and can't do a sit up yet, i am just about at the stage where getting up out of a lying position doesn't require gymnastics, and i can lift myself up with my stomach muscles

Hey, thanks for doing this! My SO will need a kidney transplant in the next 5 years or so, so this is incredibly interesting to me.

I'll be unable to donate my kidney to him due to incompatible blood types (although pheresis is an option), plus mine are just too physically small for him. We'll go through the testing process together to check on the antigen match level which will most likely be low, but my guess is it will end up being a paired donation process.

Can you talk about the testing process you had to go through? My understanding is that it's a fairly in-depth process, to say the least. From the perspective of the person who donated, can you talk a little bit about your experiences? That may be too general, but as someone who will most likely go through this process in a couple of years, I'm just curious about it from the donor's perspective.

yeah, i am british, so can tell you what the nhs does. initially when you put your name in a hat, you come and and give blood, urine and vitals. this checks your genetic similarity and blood type, hiv etc etc. this process doesnt take long, about an hour or so.

if you make it past this stage, and they are seriously considering you as a candidate, you come in for a full day of medical testing, and here they check everything, which is kind of neat, as full body check ups are not free in most countries and they don't do them willy nilly in the uk as they are unnecessary for most people. turned out i was healthy and fit (i cycle a lot, and am pretty thin which makes surgery easier and more likely to not have complications). at this stage you also meet the surgeon and doctor who explain everything and take you through some paperwork.

if you make it past this stage, we had to do an independent assessment, to prove that i was not being paid or coerced into donating and if i was mentally ready and understanding of the situation. you need to bring photos and proof that you know eachother, this was easy as we are related and get on really well.

this whole process can last a while as the donation day may be changed or set months after any of these stages depending on the person recieving the kidney really (when their kidney function really goes downhill).

this is just the stages, obviously their is a lot of family stress and emotions that come as well during the process, which is good and bad (brings you together, but is rubbish at the same time)

yes, will do. just need to go pick my dad up from the train station (i am driving again - woo) and will answer your question properly

If you ever have a kidney problem in the future causing you to need another kidney, do you get bumped up on the list?

I think it would factor into the list if I didn't have anyone to give me kidney for a direct transfer, or a paired donation or a group paired donation. If you are on the list, they have loads of factors that determine who is top of the list, one of which is compatibility so luck is involved as well. Although to answer your question completely, I am not 100%. Although it is unlikely that I would need a new kidney, statistics say my chances of kidney failure are the same as the general population

Very awesome! Were you scared at all? What was the condition your sister had? How has the recovery been? For anyone who is interested in organ donation or kidney disease, you can learn more here too: http://www.kidney.org/atoz/atozTopic_Organ-Tissue-Donation.cfm Sign up to be a donor if you can!

iga nephropathy. recovery was hell for the first week, better for the second and now at the end of third, things start to get boring, i want to cycle and run around, but can't yet which is frustrating; but in a few weeks it will be a thing of the past and i will start doing fun stuff like cyling again.

as for being scared, i was okay. i am prone to being heavily anxious, my last year of university can attest to that, but i had a few sessions of counselling before the operation (not specifically for the operation, but to help with my anxiety and how to deal with it better). i actually felt okay, i just focussed on the day to day stuff, and cycled a lot and went the gym and got fit. cycling is my form of meditation and i would just go out for a few hours a day to do some heavy duty climbing, or do time trial style riding around london to relax myself. on the morning of the operation, i was okay, until my parents came in the room to send me off, i could tell they were just barely keeping it together, and i started feeling really nervous, but as soon as i was out the room and being wheeled out by the nurses to go the the anaesthetics room, i started joking about with the nurses and chatting with the anesthesiologists

I thought I recognized you from r/peloton. Any worries about getting those climbs in with one kidney?

right now yes, but not in a few months i reckon. when i get back on the bike in a few weeks, it will be hard; as 6 weeks off for anyone sets you back. but ill build it back up, and after a while i should be back to normal, and the same as anyone else, as the kidney you have left grows, and will perform 75-80% of my original kidney function before the operation, which is way more than enough to do anything. although i think i have definetly put pro cyclist off my career list by doing this.

although i want to do climbing challenges more than ever now; i now have the pittsburgh dirty dozen on my list and also to do a mountain stage of the tour, giro and Vuelta in a week (a challenge i made up)

Does it hurt to go peepee?

When they took the catheter out after a few days, I tried to go pee (which sucks in its own right as walking to the toilet after a few days takes a hell of a lot of energy) and couldn't, then tried again and still couldn't. They then ultrasounded my bladder and saw I had a lot of pee build up, so they put the catheter back in, it feels really weird as they are putting it in, then a massive sharp pain as it passes the prostate and then weird again. The thing was I needed a pee so bad, I didn't care about the pain, the release was amazing. They took it out the next day and thank goodness I could pee (no pain). A fit young female doctor came in with a guy doctor (I had come to know her okayish, and fancied her a wee bit) so when she said she was going to put the catheter in, I was like "NO thank you very much please, thank you, can I have the guy do it"

It'll grow back, right?

If you believe in miracles (or for the scientific - events not expected to occur, that have infinitesimally small odds of happening), then yes, it could grow back

do you miss it?

now and then, i have stange realisation moments, when what i have done suddenly feels really weird. the other day i was talking about space and atoms with someone, and then i thought about how i was a collection of atoms, who moved a bunch of my atoms to someone else made of atoms to make them work better. at that point i felt really odd, and could sense there was a bit missing, but i didnt miss it

Does your urine have a different color now? I heard that could happen.

nope, my pee has been fine. donating a kidney will not change your pee colour unless there was a problem during surgery. this is because you are taking a completely healthy person and just taking away a little part of them, this shouldnt change things like pee colour. kidneys are responsible for making pee and if there is something wrong with your kidneys your pee can change colour (brown, dark orange etc, kidney stones can cause your pee to turn red (blood)). but there is nothing wrong with my kidney that is left.

the only thing that might happen is that if you don't drink enough water you overwork your only kidney you have left and turn pee darker

Will your sister need to take some specific medicaments for the rest of her life so her body won't reject your kidney? If yes, would she need them if your blood types were the same?

yes, she takes all sorts of medications throughout the day, and will do for the rest of her life, less over time but rejection is still a possibility at the moment so she has to take a lot. amongst the anti rejection there are anti-virals, anti biotics, blood thinners, pain meds and a few others

Is it true that donating your kidney can make you infertile?

i got warned of all the risks in a very long meeting with the doctors and surgeons, and infertility was not on the list. so i very much doubt it, i just googled as well, and can't seem to see any links for infertility in men if you donate a kidney. you can develop Hydrocele testis, which is basically an accumulation of clear fluid in your balls that causes a painless enlargement in the scrotum. this hasnt happened to me yet, and wouldn't make you infertile if it did - i was told to just see a doctor immediately if that happened. i suppose if they had a catastrophe in the operating theatre then maybe going infertile would be possible, but that would be very unlikely

What happens if you ever get sick and you need a kidney, will you be upset because you would have been better off with two kidneys?

my odds of having kidney problems are the same as anyone else. and even if i did have kidney problems, then having one or two wouldn't make too much difference.

What's you're favorit juice?

homemade oj is pretty good. although in terms of just drinks in general, coke is the most delicious beverage of all, i rarely drink soft drinks, so when i do it makes it all the sweeter. although i shouldn't drink too much at the moment, as caffeine is harsh on the kidneys

This might be a stupid question, but can you drink the same amount of alcohol as before, or is it more damaging/dangerous than before? I've just heard of someone who was only born with one kidney and he couldn't really drink much.

no, i havent had any alcohol since the surgery, even though i am off pain meds. i have done a lot of drinking since i was younger, and to be honest, i can't be bothered getting shitfaced anymore, getting so drunk that you throw up is not what i call fun anymore, i still like getting drunk and partying but i don't plan on do 8 shots in a row and then downing a beer ever again. plus i have got to the age when hangovers really hurt and anymore than two days in a row of heavy drinking makes me a zombie. so in a couple of months when i am back to normal, i will drink about the same as before, although i will drink more water through the night to help my single kidney filter alcohol and will drink more when i get home and probably take rehydration salts as well. but to be honest i will drink less than before, and i am okay with that. i am only 24, so for some people that would be a travesty, but we are all different

Yeah, I don't really drink more than a few times a year, I was just wondering if your doctor had said anything about it.

yeah, he did. drink lots of water when you drink alcohol, and don't go completely mental, but other than that, just do like you did before (within reason)

If your sister's body rejects the new kidney, what will they do with it? Does it go to someone else who it should be compatible with?

It would not go to someone else, it would either go in the bin or go to research students. They would take it out and either replace it with another kidney or put her on dialysis. But I think dialysis is more likely, although this is more a medical professionals area

As a recipient of a kidney transplant this really touches me. you are an amazing person for being so giving. No combination of words can really express what it means to basically have another chance at life because of the good nature of another person.

As far as a question what has your recovery experience been like? I'm curious of the difference between donor and recipient

she left hospital one day after i did, which was surprising to me i thought she would have to be in for 10+ days like the doctors said, but she was out in 5. at this point i thought she was doing better than i was, but in reality she was on more painkillers and had a bit more grit. the reason why is that she has spent 8 years on a casual decline with the last year having lots of days where she feels shit and has to push through, whereas i was perfectly healthy (physically) and very fit, so i wasnt used to feeling shitty. although recovery for me has been much quicker i hit all the milestones before her, walking outside, showering, driving, going off pain meds.

she also had to go into the hospital for a rejection episode the other day, she was suffering from severe headaches and they had seen that her creatinine was going up. they ended up having to take a biopsy the other day, but luckily the results were negative for rejection, the doctors just have to adjust the meds.

i have 6 weeks off, and after that the doctors say almost everyone is back to normal. she has 6 months paid leave of absence from work, and this really shows that she will need it, going to the hospital twice a week (more if she has to go in voluntary), and slow. but she is trooper of a calibre i don't understand

Weird! I donated a few years ago, and my scar is WAY higher. Right under my belly button, not gone-wild-worthy at all. I wonder if that's a male/female difference or just doctor preference? Anyone know?

It's just above the top of my pubic hair, so not completely raunchy, but ain't nobody got time for that

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I was up hobbling in a few days. However I did not just have laparoscopic on its own, I also had an incision above my pubic area to remove the kidney once they had finished with the keyhole bit. But yes keyhole on its own does have significantly less recovery time then plain old slicing as you said. Why anyone would leave before they needed to is beyond me (free healthcare I the uk), but I was able to leave after 3 days, but left on the 4th day. I can walk down the street now and nobody could tell. If they took a piece of my liver I think you would have to add a day on to the hospital visit, so they could guarantee you are working fine, but recovery time should be similar. I am someone who would know, you don't just turn up at a hospital one day and do this, lots of questions first (only one I a am not 100% about is the liver question)

Do you miss drinking?

I don't have to give up drinking, and it has only been 3 weeks since the operation with no drinking. which for me isn't really an issue, but I understand that it might be for some, if missing drinking would really be an issue, I would think that donating a kidney would not be a good idea

Did they ask you if you've ever passed stones?

Yes, they are very thorough in background and testing. You get a full day of body tests and interviews for one of stages where you use almost every machine in the hospital and do every test

How much weight did you lose?

About 2kg in muscle and fat (5lb roughly). The kidney fully drained of fluid weighs about the same as a 1/4 pound burger (just the patty). But starting to put some weight back on. But tha

Who pays for your pre-transplant testing, operation, follow-ups, etc?

The NHS, which means the government pays for it, which means I indirectly pay for it

I'm looking into donation myself. I'm American, though.

Okay, who is it for?

An anonymous donation. No one in my life needs a kidney.

It's sounds very generous, but be aware that this is major surgery, and you will need a lot of help getting back to health. Since it was my sister, my family pulled together, I suppose your family/friends don't have to take care of a recipient which is harder, but you will need waited on hand and foot for two weeks, and then be out of work for the next four. If you can handle that, the next step, is actually getting approval, I remember the doctors saying that a lot of altruistic donors get turned away, not because they don't want them, but because it is unnecessary surgery and there can always be complications (the cumulative odds are about 1/6 that something will happen, from teeny tiny problems to death) so you need to be physically and mentally fit. What made you want to do it? Are you mentally fit and stable? These questions are ones that they will really push you on, so try to be as honest as possible (you don't have to tell me the answers if you don't want). It may seem like I am telling you not to do it, i think it is a great thing to do, but because I know how hard it can be on you (for example the first week is hell, godamn hell) you need to have as many facts as possible from both sides

I am disabled and don't work. I've had surgery before-- back surgery.

Well you should always go in to a hospital and get more information from professionals if this is something you feel strongly about, because they can give you loads more information. Good luck on your journey.

any other questions? I can't answer everything but I do know a lot about it, the kidney journey is long and rigorous and you end up learning loads about all aspects of donation in general

I am mentally ill, and wonder if I'd still be allowed to donate. What's the policy on that in the UK?

It doesn't give you great chances, but it won't rule you out altogether, altruistic donations are going up in the uk.

And all this for no financial gain, and quite possibly no other reward than self satisfaction, you could always have your kidney go to someone who doesn't make it.

I am up because I have to pee during the nights, and then can't get back to sleep, (I am from the uk too), how come are you up at 5 o'clock asking about kidneys?

It is just before 10 pm my time. I'm in California, USA.

Ah, edit, you don't know who your kidney goes to if it is altruistic in the uk

Anyway thanks for the questions, it has been a pleasure talking to you. I think it is always good for potential donors to speak to people, from all steps of the donation process.

Lastly I think the most important people to speak to are people who have your best interests at heart, this is your decision, and your priority should be you. A phrase I have stolen and sometimes say is "put on your own life mask before helping others", I can't think of better advice to give a potential kidney donor. Good luck

I donated a kidney in 06. around 3 weeks post-op is when things start to feel better by the day. i still wouldn't recommend rolling over in bed. when i did, about 2-3 weeks post-op, i could literally feel organs flopping around in there and it almost made me puke. as for what to expect later on? nothing. you will never know, physically, that you only have one kidney. drink the same eat the same and do all the same stuff you did. not sure if it's from the pre-op prophylactic IV antibiotics but, i have not even had a simple common cold since 06. one strong recommendation though, always (for life) remind your doctors that you only have one kidney. so many common meds are nephro-toxic, even aspirin. my question to you, do you feel different mentally, emotionally,spiritually??? i know it changed me in some ways. oh, and by the way, thanks for being part of what's right in this world!!!!

the "feeling better day by day" comment resonates; it has now been three and a bit weeks since the operation, and two days ago i tried to do a press up and a microsecond in i could feel my core say "nope, not going to happen", and today i just did 5 without bother. haha, the flop and plop of internal organs ended after two weeks for me.

---

To answer your question - i think it is too soon to tell if i have changed my outlook on life. A trait of mine is that i don't readily accept compliments, so i have a tendency to undervalue my achievements so i don't like people telling me how awesome i am, as i don't feel what i have done is worthy of such praise. this is something i have to work on.

i suppose it is because, i did a good thing, but that good thing totals about 6 weeks of my life that i will spend getting better and after that if i go back to normal. now, how long can i hold on my donation to justify to myself that i am helping the world. that may not have come out right, to sum up what i mean - basically in 5 years time, if someone asked me what is the last awesome thing you did for someone, i want it to be something else.

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just read your ama, it was really good, becoming a nurse is such an awesome thing, you became the change you wanted to see in the world. i suppose, i want to do something like you, use what i am good at to help others (although i will help myself for a bit, skiing and cycling are my passions and they don't come cheap)

well, like you, I don't take compliments well. people say what i did was awesome, i'm a great guy, you're a hero, etc, etc...my go to now? The doctor was the hero, i just laid on a table and went to sleep for a few hours. as far as how i feel? i didn't do something great in the world, i did something great and selfless for someone else and for all the people who love and care about her. but it changed me. i am different. i see all the potential for good in each person, in one simple act. i am more confident in myself, as a person, knowing that i have it in me to be kind, thoughtful, selfless, caring. I'm a 44 year old guy, a former steel worker, former power plant mechanic for fucks sake. i'm supposed to be a tough-guy. i am, but i'm softer. 3 years after donating, i quit my job, went to college and became a nurse (i actually start my first position on monday) because now i feel a need to help people, to make a positive difference in peoples lives. ten years from now, when someone asks you what the greatest thing you ever did for someone was, hell yeah, talk about the donation. but don't forget to smile and say hello to the old lady in the store, to open the door for someone, to offer your seat to a stranger, to smile and give a little nod to the people you walk by on the street. the donation is the great thing you did for your sister, all them little things, being kind, is the great thing you do for this world. not many people are willing to do what you did, can't blame em. but you did it, you showed what you're really made of. sleep well my friend, you are awesome.....

just to let you know i edited my comment a little since last time, but excellent reply

I've been living with 1 kidney since birth. Anything the doctor said about living with 1?

Said that you if you never got tested for it, had a ct scan etc, you might never have known, as differences between you and a twofer because of this are tiny.

If you could provide advice to anybody about to undergo a kidney donation surgery, what would it be?

Prepare for the worst hope for the best

[deleted]

good to know

The word they and its inflections (their and them) can be used in the singular to refer to yourself. His title was grammatically correct.

http://en.wikipedia.org/wiki/Singular_they

Brilliant, i thought it was fine, but would not have been able to defend myself about it. (Although this is a terrible attitude to take in life for most things, if not everything)