I'm coming up on 12 years since I had my stroke on my 18th birthday. Spent around 10 days in the hospital recovering, gaining the use of my left side back. It was then that it was noticed my kidney function had started to deteriorate. From about 18-23 I was a pretty normal at that age, although I was pretty tired and had to go for blood tests 2-3 times a week, (mostly because of the blood thinners). When I was 22, traveled for a month to Montreal (which pissed off my nephrologist, for not keeping in good enough contact, so he dropped me as a patient, and forced me to find a different one who is an amazing guy/doctor!) About a year later at 23 years old, went from being 5'3 and 120 ibs, to down to 97 ibs, and with my kidney function being below 10%, my docs took that as the sign it was time for me to start dialysis. I started on Peritoneal dialysis Did that for 2 years, (I was a terrible patient and admittedly I didn't do it regularly) and then it stopped working for me altogether, the same week I had just started a new job. Now, i'm approaching my 4th year of Hemodialysis. I've been on the transplant list, approaching 7 years, (In Alberta, (where i'm at, that's the average wait time for a kidney). Since starting Hemo, i've since become a model patient. I've made amends with the nephrologist that gave me the boot, (he's the head of the transplant team so it just made sense to play nice with him). I live at home with my mom, as I need some assistance and so does she. They never really knew what happened to my kidneys, (it was idiopathic glomerulonephritis, which means they don't know the cause either) which is why I've been super hesitant to take a kidney from family. It has been one heck of an interesting journey and my 30th b day is a time for reflection, which is why i'm doing this AMA; feel free to ask me anything.

Proof that is my fistula, where I needle my arm for dialysis.

Tl;DR Turning 30 tomorrow, been 12 years since I had a stroke and I've been on some sort of Dialysis for almost 6 years and haven't peed in 3 years. Have watched tons of TV and read many magazines in my life. Ask away!

Some kind person out there has gone and bought me Reddit Gold for my B day. i didn't think it would be such a big thing, but I have tears in my eyes. It may not be a kidney, but it'll do. Thank you very much.

Comments: 109 • Responses: 50  • Date: 

superherocostume12 karma

I don't have a question, but I just want to tell you that you're doing a great job, and that I really really hope for a speedy transplant and recovery!

Kidney disease is in my family, and while I'm not at risk, I've seen too many of my close family members become sick and lose sight of who they once were. However, my uncle got his transplant a few years ago and has made a wonderful recovery and is full of life and health at a little less than 60 years old.

I'm so hopeful that you will get your transplant and that you will recover nicely and quickly, and that you can be free from all these terrible, life-draining things. I would never wish dialysis on my worst enemy.

Also, Happy Birthday! Maybe by your next one you'll have someone else's body part stuffed into your back!

smoothpops7 karma

HAHA that's the greatest birthday wish ever! Thank you very much for the kind words, and here's to your uncle living it up!

ScoliOsys8 karma

Happy Birthday

For my 30th, we got kicked out of a karaoke bar. I hope you find a match soon!

smoothpops6 karma

HAHA well done. we celebrated last night, and we got kicked off the patio for having too many people :) havent been kicked out of a bar in quite a few years.

qx96504 karma

I'm diabetic, not on dialysis but I have poor kidney function. I wish you the best, I really do, but you honestly have a better attitude about your situation than most already!

smoothpops6 karma

I really hope that you are able to keep the diabetes in check and are able to keep your remaining kidney function! When i first started dialysis (i'm a non diabetic), one of my nurses said he had diabetes but since he ate so healthy and exercised so regularly, his diabetes was completely in check. i hope that's the case with you. people say dialysis is the worst thing that could happen to someone, personally i think it diabetes!

If you do ever end up, on dialysis, please feel free to pm me. I have tons of experience and tips to make life easier, and i wish i had had someone to help guide me through the early goings.

dearsweettea4 karma

Happy birthday! Thank you for sharing your story. You, and others like you, are what keep me going on those long days at work. (I work with organ donation.)

smoothpops4 karma

Thanks! Doing this AMA has been great. Keep up the good work bud!

paranoidjoo3 karma

  1. Happy birthday, kick butt!
  2. How can we help you? Have you found a donor yet?
  3. Is it okay to ask what your blood type is?
  4. Would you get a donor quicker in the USA?
  5. I wish you the absolute best!

smoothpops3 karma

Thanks homie! I'm still on the list, tis been about 6 years and they say it takes about 7 years average to be matched up. i'm O-negative, so the list is pretty long. not sure about wait times in the USA, it does seem you guys are more efficient when it comes to finding matches, but everything here is covered (money wise) from my surgery to the expensive drugs i have to take post surgery until the donor kidney stops working. I Appreciate the words of encouragement! i hope your out there kicking ass and eating mean people's cake

brownsfan7603 karma

No question just wanted to wish you a very happy 30th birthday!

smoothpops2 karma

Thank you kind sir! I was getting worried that no one was going to

LeahBrahms3 karma

smoothpops2 karma

that's phenomenal! I'm gonna hafta learn how to bake, so i can make kidney cakes for my fellow patients

sundaymetakat3 karma

How have you coped with facing your health troubles at such a young age? (Happy birthday and hang in there!)

smoothpops3 karma

That's a great question! From 18-25 i didn't cope well at all. I had the same positive attitude, problem was i was hell bent on pretending i was 100% healthy. I didn't take my pills, skipped doc appointments and skipped doing dialysis runs (i was on home PD, so i was my own administrator). Eventually my nephrologist gave me the boot. I couldn't cope with facing my mortality. Now i'm 30, and have worked to become a model patient. The nurses send the new patients to come chat with me.

belligerent_bear1 karma

Did you feel sick from 18-25?

Was it easy to just ignore?

smoothpops1 karma

Never really felt sick, it was more just lethargic and slightly zonked out. But you get used to it, and move on.

taragregson3 karma

Good luck to you!

smoothpops2 karma

thank you! I expected a lot of questions (which i welcome) when i submitted the IAMA, what i didn't expect was all the well wishes. they do mean a lot though, internet friend.

BillP_DSEN3 karma

What could be done to lessen CKD stage 5 disease burden and/or the incenter hemodialysis treatment burden?

smoothpops3 karma

There's only a couple things I could think of; better communication between doc/patient while my kidneys were failing. While my kidney function was failing, there wasn't much education/support. It wasn't until I was on dialysis, did the support, nutrition, education aspect really became a part of it. Also better education on our 2 dialysis options would have been much appreciated. Had i known just what was entailed with PD, i never would have taken that route. Those were probably my lowest days (which lasted 2 years).

As for my incenter care; i'm totally spoiled. I go to a satellite clinic, but the condition for being accepted there is that you have to be in relatively good health. The nurses there are some of the best in the country and we always joke that i basically gained 20 moms, they really do look out for me. Once a week a doc comes bye, to advise us on any issues/write prescriptions, and my nephrologist gave me his personal cell number for any reason i may need it. we have a social worker that comes bye once a week, incase we need to talk/help with paper work...a kinesologist comes bye to make sure we're exercising enough, and once a month we have a nutritionist stop by with our blood work results and helps us with our diets. like i said, as far as my situation goes, i'm totally spoiled. When i first started hemo, i did it at the hospital and that was super depressing. The only negative about my incenter place, is 2 years ago i mustered up all my courage and took a trip to kenya for my best friends wedding. the clinic there had wifi and a chef, whereas my clinic in Alberta has neither.

BillP_DSEN2 karma

How long are your treatments?

How long did you stay in Kenya? Were you able to go on safari?

smoothpops3 karma

I go 3 times a week, 4 hours at a time. Each chair gets their own 20inch tv, and i also bring my laptop to watch tv shows/movies. I went to Mombassa, kenya for 2 weeks for my bud's wedding. I didnt go on a safari, as they were 3 day trips and i was worried about getting back in time. But i vowed to go back one day, after i get kidney!

NGAqpezy2 karma

Just want to say good luck, I'm 17 and just around two months ago i was at the hospital for kidney failure. Mine were only working at 3% so they instantly gave me a perma hemo catheter. i finally got that out acouple weeks ago. and they also gave me a PD catheter that i use know. With all the factors i have they said im a golden example for a kidney donor so I should be getting one in around 3 months. I really feel for yeah man. Good luck with you're operation when you get you're kidney!

smoothpops1 karma

sorry to hear you're going through all this. You are waaay too young! but since you're so young, i fully expect you to go out and kick some major kidney failure ass, show us old folk how its done. I can't wait for you to get kidney, i'm rooting hard for you. Make sure you take good care of yourself, and I wanna hear about your post transplant recovery soon.

Ramen442 karma

What's it like to have not peed in 3 years?! How do you think it would be when you pee again? Do you miss the sweet relief of having to pee really bad and then going?

smoothpops1 karma

Oh man, i miss a good long pee. especially the ones out doors! I heard that's one of the best things following a transplant, taking wicked pees! It's not all bad though, i never have to stop during road trips to pee, (unless there is other peeps in the car), and i never have to get up in middle of the night to pee!

Maximillian6662 karma

Any idea what caused the stroke?

smoothpops3 karma

I believe it was a chain reaction from the declining function of my kidneys. It caused my gall bladder to over stimulate, which sent a clot up my right side

AudgieD2 karma

Good luck to you. I hope your match comes soon. I'm just over 10 years since my kidney transplant. Come join us over at /r/transplant some time.

smoothpops1 karma

What's it like? Do you get to drink water, eat cheese and peanut butter all day? :) in all serious though, what's life like post transplant? Any limitations?

nae322 karma

Do you feel your route to a kidney is fair, or do you think gaming the system, knowing the right doc, going to the right facility, or having money would get you an organ faster?

smoothpops10 karma

Over the years i've read plenty or articles of people going to Isreal/india, and all sorts of places where the black market on organs is thriving. The way i see it; there's no guarantees on how long a transplanted kidney will last, (it could be a week, it could be 30 years). Not only do I not have the funds to do it, but I live in Canada, where my dialysis treatment ($1400 a run, 3 times a week) is fully covered. And my mom allows me to live at home, rent free. There are ways to game the system, but in my case it would be needlessly unethical, too expensive and post treatment I get free access to immunosuppressant drugs, which i pretty sure I'd lose access to, if I cheated.

I'm also blessed, that because i'm young/somewhat fit, that dialysis is a lot easier on my body than it is on a 60 year olds. Not to mention I can drive to my appointments, instead of having to wait for the handibus like they do.

dbackbmx32 karma

My dad was waiting on a kidney for 15 years. Finally got one and it failed within 6 months due to a rare bacterial infection. I get what your going through. Stay strong. Stay positive.

smoothpops1 karma

I am so sorry to hear about your dad! how'd he take the news? Here's to hoping major strides in stem cell research make kidneys more compatible and last longer!

SaffieLaRue2 karma

Happy 30th - hope you can live it up a bit! This sort of post encourages people to be organ donors - doing your bit for the world. Big hug for you and your mum!

smoothpops1 karma

Haha thanks. Ill pass it in to her!

TheAwkwardest2 karma

If you could buy a kidney, would you?

If the state could buy kidneys and disperse them via Canadian healthcare system (spend the dialysis money on a kidney instead) would you like that?

smoothpops3 karma

Honestly, I don't know! I really do hate dialysis and the lifestyle surrounding it. At times i feel downright miserable, and that's just they way it is with kidney patients. So i guess yes, yes I would. unless the kidneys were being harvested in super unethical methods.

my provinces did just pledge approx. $45 million to research on how to shorten transplant list wait times.

TheAwkwardest2 karma

-_- I'd sell Canada my kidney for less then what they have to pay out in dialysis, just sayin'.

As it is now, I can't even afford to donate, that is, I'd be fired from work because I'd have to recover from the operation.

smoothpops3 karma

Werd. at $1400 a run, 3x a week, that's $218 400 for just one year. even if you charged, $400 000, that would still be a huge savings to Canadian tax payers! On the flip side though, places around the world are known for drugging people and selling their kidneys on the black market, so the Canadian Gov. is wary of that.

Edit; The Alberta Provincial gov. is looking into implementing a system where the donor would be paid their full salary by the gov. during the recovery time off to encourage donations.

TheAwkwardest1 karma

I would go as low as 50k, honestly. I'd submit to background checks to ensure I have not been drugged or whatever, lol.

I want to pay for my college and I only need 1 kidney!

I bet you could find some Haitians that would go as low as like 3-4k. It would probably increase their life expectancy too... medical science has proven that 2 kidneys will not prevent you from starving to death

smoothpops2 karma

If I had the $$ id total take you up on that. Since I don't, i'll be honest with you; it's a seller's market. $50K is super low, for the risk/reward. If it were me, i'd make the receiver throw in a package of sour skittles.

TheAwkwardest2 karma

Oh, I wouldn't do it since its illegal, and it would be hard to enforce/make sure the doctor is legit/ all that jazz.

Here is the horribly depressing yet, also happy truth: Donation doesn't lower life expectancy, except if you somehow get stabbed in your remaining kidney, or some such (pretty unlikely) or get an infection or something during the operation (also unlikely).

Its just that people can't really get over the fact that losing a kidney doesn't lower life expectancy that nobody donates. Its not intuitive.

Why people don't sign up to be donaters for when/if they die. I don't know. My hypothesis is that they suck

smoothpops2 karma

I hear ya! it sounds like you have plenty experience with someone waiting for a transplant. you seem to get it. hope all is ok

badjujupoo2 karma

How badass does it feel to kick Death in the face and say "You can't get rid of me that easily"?

smoothpops1 karma

Hehe i out ran natural selection.

kikikillfy2 karma

Happy Birthday! For my 30th birthday I got my peritoneal catheter put in! I have now been on PD for almost 3 years. High Five kidney cousin!

smoothpops1 karma

Stay strong kidney brother! Hope the pd is treating ya well, miss swimming?

ManicParroT2 karma

Before you got sick, were you signed up to be an organ donor?

smoothpops2 karma

Most definitely. here in Alberta, all you have to do is check a box and sign the back of our provincial health care cards. I still am, from what i've been told i can still donate my liver, spleen, etc. as long as I don't take blood infusions

Geronimo152 karma

Sorry if you already answered this somewhere but how much of your time is spent at a Dialysis Machine?

Can you do it at home or do you need to go in for it?

smoothpops1 karma

no worries. my treatments are 3 times a week, at 4 hours a session. luckily my center runs on sundays, so I run tue, thurs. and sundays. Whereas most centers make people run sat. nights, which would be super depressing. WE can totally run at home. for me personally, i like to keep the dialysis separate from my house and not only do my nurses take really good care of me at the center, i got a couple ridiculously hot ones there. Super fun to flirt with them

BillP_DSEN2 karma

If you met someone who reminded you of you six/seven years ago, what would you tell him/her? Is there something someone could have told you when you were facing starting dialysis that would have helped you? You mentioned in comments that you wish you hadn't started on PD - why? What do you know now that you wish you knew then?

smoothpops1 karma

Honestly, i'm not sure if there were any magic words that would have turned me around. My nephrologist certainly tried before he gave up on me. The best attempt would have pointed out that doing nothing, (pretending i was healthy when i wasn't), has its own consequences, and i could have possibly gotten a few more years out of my kidney with immunosupressents (steroids).

smoothpops1 karma

Oh, and the PD was terrible for me. The way it works as the implant a catheter into your abdomen, which sticks out by 30ish centimetres. You can't get it wet, so you couldn't wash your stomach properly (i was on it for 2 years). Using a machine, they pipe in 1.5 litres of fluid through the catheter, (keep in mind i was 97 pounds) which gets sucked out and replaced multiple times throughout the night. This is done by a machine that beeps more than r2d2 and sounds like darth vader, but with a breathing problem. No matter how clean you kept things, infections were inevitable and those were actually super painful. Hemodialysis is a much better option, and even then some people really suffer on it.

invadethecity2 karma

I don't really have a question, but I've been on dialysis for about seven months, with kidney failure relating to my juvenile diabetes. I hate it so much. I hope this doesn't sound insensitive, but I hear all these stories about people on dialysis for years and if it comes to that for me, I don't know if I'll have the endurance. I've started the transplant process and even have a friend who wants to donate, but they won't test said friend or put me on the list until my diabetes is under more control. I hope you get your transplant.

smoothpops1 karma

You'd be surprised at your inner strength! I wish you all the luck controlling your diabetes and that you get ur kidney soon. In the meantime, are you doing hemo fellow kidney brother?

D2sWorld1 karma

What's the moral of your story ? What advice would you give to other and what have you learned about life ?

smoothpops4 karma

I'm no genius, nor do I claim to be. From my experiences what I can only offer is; Pride, take it in everything you do and act accordingly. I see so many people come in for treatment, that are just as healthy as me but they act so pitiful. one day, they're going to receive a kidney, get better, but they'll never recover from being pitiful, once that stain gets on your character there's no getting it off.
Live! At 17 I was a super healthy active kid, the day I turned 18 my body/mind became one of a 70 year old. So many people put limits on themselves for so many ill conceived reasons, (worried what others will think of them, laziness, fear...) The clock is ticking on your health, one day it will break down. take full advantage of life while you can.
My last lesson; Your Mind! it's a freaking gift! whether you choose to share it with the world or not, it's just like any muscle, it needs to be constantly worked out. After my stroke, I've noticed that it was never quite the same. That's a confidence that most people don't recognize they have. Flex that mind muscle of yours!!

Edit; oh and if you have the chance to make someone laugh, you best take it. There's really nothing better in life then seeing someone you love laugh. And enjoy the shit out of water! seriously, I had BBQ for dinner, which was amazing, but it paled in comparison to the glass of water i had with my din. once you're on a fluid restriction, water will taste better than any drink in the world

D2sWorld2 karma

Thank you very much sir , you are inspiring in your words and I wish you an amazing birthday may you have many more

smoothpops1 karma

Thanks! It really is your world and i'm just living in it :P

IhateToronto1 karma

So are you just completely tied to your town since dialysis is daily right?

You can never go away for a vacation?

smoothpops1 karma

Its every 2-3 days, and every major city has dialysis centres that accept travellers. I actually did a 2 week trip to kenya 2 years ago and did hemo there. Ive never felt tied down

IhateToronto2 karma

Oh, so you can just go to a centre? That's helpful!

I always thought that would be the worst part of it. Just NEVER having the option to go away.

It's like being in a prison.

smoothpops1 karma

You're sorta right. The prison isn't a place or a center. The prison i'm in, is my body.

mraddams1 karma

What do you do for a living? And what does your everyday look like?

Happy birthday and best of luck! :)

smoothpops1 karma

I was working in finance, worked my way up. Realized i hated it, now im back in university finishing up my poli sci undergrad

aloharoad1 karma

Are you still on blood thinners or have those been phased out?

smoothpops2 karma

i had a long chat with my second doc when i was around 24, and simply told him that I was not going to take them for the rest of my life, as the dialysis decreased the risk of me having another stroke. after a bunch of tests, he thankfully agreed and took me off them.

Danmax1 karma

Do you think people should be permitted to sell kidneys? Donate college tuition for a kidney? Things along those lines. Also, a friend of mine needed a kidney, his doctor told him to go to China where they would let him get the kidney of a convicted criminal. He did not do that. I'm curious what your thoughts might be about such a method.

smoothpops1 karma

I'm so conflicted about this. The same offer has been made to me, i've been told to go there, India, Israel, Mexico, you name it. The quality of my life would be infinitely improved, by diminishing the quality of someone else's. For me personally, I couldn't do it. If I lived somewhere where health care wasn't a basic right, then maybe my attitude would change, but here in Canada I can still maintain a life because my health care won't put me into enormous debt.

The college tuition idea seems to be pretty recent. My thoughts on this are that college/university is too expensive and that needs to be addressed first before any kidney for tuition system could be implemented.

micabebecca1 karma

Hey birthday buddy! I am 30 tomorrow (July 21st) as well. :)

smoothpops1 karma

EH EH! you me and Robin Williams! Happy B day homeslice! Got big plans?

Edit: not Chakka Khan's b day tomorrow, she just once gave an iconic concert on our bday, back in the day

micabebecca2 karma

Nope. I'm recovering from some abdominal issues from a ruptured ovarian cyst. Woot for medical bullshit. It's all very exciting. Pain meds though!!

smoothpops1 karma

That sounds terribly painful, I hope you and your lady tubes recover super soon. Happy b day!! I on the other hand am going golfing tomorrow afternoon and then to a patio (i moved my dialysis treatment to monday night, so i'll be looking super puffy soon). Hopefully Robert Williams is out there somewhere planning to have normal b day tomorrow.

simplyaria1 karma

Happy birthday :)

smoothpops1 karma

Much appreciated my future King of the North!

[deleted]1 karma


smoothpops3 karma

No, I play the piano so I'd hate to get banana on my keys. Also, as part of the dialysis super special hero diet, I can't eat bananas often. They don't last long around me, as they are my favorite fruit so I'd have to replace my fingers too often for my liking.

Can you imagine what it would be like to have shoes as mittens?

[deleted]2 karma


smoothpops2 karma

you sly bastard, you had me at fuzzy

tupperwear1 karma

I know a woman who gave a stranger one of her kidneys. They are now like sisters.

Don't you wish someone could do that for you? I mean, it must be tough to know that there are plenty of people out there who would do it if they could, but they know nothing about donating and wouldn't know where to start.

I'm not talking about the screening process, etc. I understand why it's so in depth. I just mean I wish more people know how to get started in it.

smoothpops3 karma

I've had some friends and family offer to give me a kidney. That is exactly one of the problems that we face; we have no idea how to proceed. there's very little/to no information on what to do next. At the same time, i don't wana push to hard because donating a kidney is a very big and personal decision.

PS I also know a woman :)

tupperwear1 karma

If only there were some sort of registry, like for bone marrow. Sure, a lot of people willing to donate would be weeded out, but you might just get lucky.

Good luck. I wish you a full recovery.

smoothpops2 karma

I really appreciate the good wishes, thanks!
As we head into the future, I believe there is going to be plenty of changes being made to organ donation, that will make it more efficient and offer some sort of rewards for the donor, without delving into unethical territories.

tupperwear1 karma

The reward for a donor should be giving life to someone who might lose it. That's all. I would donate in a heartbeat if I could. I'm an organ donor now, and I would gladly do it now as well.

I understand the idea of rewarding donors. I also worry about those with more money bribing people into giving organs while those like you may nto be able to do that.

smoothpops2 karma

That's true, the act of giving should be its own reward. one of the problems is; the recovery for the recipient is around 2 weeks, while the recovery period for the donor can be upto 6 months. they usually can't work during that period. the logistics of that alone, holds a lot of people back from donating (which IMHO, is totally fair).

PS thank you for being an organ donor, the act of making that conscious decision is much appreciated.

Tomeu1 karma

Haven't you thinked about suicide? No offense, I would have.

smoothpops1 karma

I really had a hard time with PD, but it never came to that. I'm much too stubborn to give up

ala-akbar1 karma

Why can't you just tell me your real name, sir? You in trouble with the law or something?

smoothpops5 karma

No trouble with the law here, i'm too pretty to go to jail. Honestly, as an east indian, I was raised to be super private and pretend everything is A-OK, even when its not. I have some long term friends that don't actually know I'm a dialysis patient. other than being super skinny and disappearing 3 nights a week , most people would never know.

[deleted]1 karma


smoothpops6 karma

At 5'3, i'm sorta like Tyrion, I was blessed with a normal sized person's averigity. I'm just happy that I've been able to use it on other people throughout the years.

edit; The guy asked me about the size of my penis.

mc_E2 karma

So like 4.5 inches erect?

smoothpops11 karma

I'll go get the tape measure, send me a pic of your mom riding a unicorn singing Queen's Bohemian Rhapsody in the meantime, so i can achieve full erectness.

goldenkmusic3 karma

You sir after that comeback can have BOTH of my ex-wifes kidneys. >I'll go get the tape measure, send me a pic of your mom riding a unicorn singing Queen's Bohemian Rhapsody in the meantime, so i can achieve full erectness.

smoothpops3 karma

I'll be waiting bye my mailbox!