21 year old recently diagnosed with end stage kidney disease. AMA!

What kind of symptoms did you have? How did you find out!

Last year (August 2017) I went to the emergency department because I had excruciating stomach pain. The hospital I went to didn’t really tell me anything but after some bloodwork I was told I would be admitted. So I stayed there for a week, had a biopsy on my kidney, and the day later I went home.

About a week after that I had an appointment with a nephrologist who told me my kidney function was at about 15% out of 100%, he told me I would need to follow up and watch my diet, etc.

Of course I did neither of those things, I felt fine mostly. I had been prescribed Tylenol 3 for my stomach pain.

Fast forward to this year (October), I went to my parents house during a break from school. I woke up one morning with a horrible migraine and I had been throwing up all day as well. My headache was so bad, I couldn’t eat anything, had to be in the dark, and I couldn’t listen to any noise.

My mom was the one who basically forced me to go to the hospital, I’m pretty stubborn and I thought it was just a bad headache.

Got to the hospital, nurse checks my blood pressure, it was 220/117, she thought her machine was broken and she checked my blood pressure 4 times. After that I was able to see the doctor right away. I ended up having a seizure while I was talking to him because my blood pressure was so high, but I don’t remember. The doctor put my on dialysis that night, and I ended up staying at that hospital for about two weeks because I had to have small procedure done where they put a tube near your heart to drain fluid from around it.

I’m finally home now, still on dialysis. I had to drop out of school and move back home as well. Life kind of sucks now honestly, I’m so jealous of people who are healthy.

Not trying to be rude here, as I certainly cannot come close to imagining what you are dealing with right now, but why didn't you change your eating or drinking habits after you found out that your kidneys were only functioning at 15% ? I totally get that people fail to heed their doctor's warnings extremely often, but learning about how rough of a state your kidneys were in would strike me as something to take really seriously.

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Was there any particular reason why you didn't attempt to change anything?

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Thanks for answering questions here, and I wish you the best of luck in your recovery.

When I first found out I was in college and I just didn’t care, I knew it was serious but I’m so stubborn and I wanted to keep living my life the way I wanted to. I didn’t want to be in the hospital with people poking at me all the time.

How are you feeling? What uplifts you currently?

I’m feeling good these days, lots of energy.

I like playing video games mostly, sometimes I bake desserts and play with my dog. I can’t do much other than relax at home haha but I’m not complaining.

How difficult is it to find a donor? I know some organs are near impossible.

It doesn’t seem that hard to find a donor, but the real challenge is finding a donor who will be a match.

Since I found out about my diagnosis, everyone I know has offered to get tested to see if they could be a potential donor.

My nephrologist told me that they will start testing my two brothers first because one of them is likely to be a match. After they’ve been tested and they aren’t a match, we can start testing other potential donors.

Anything an internet stranger can do to help?

Lol be my friend on steam!

Steam name?

Barbietoofaded

Which games do you play?

Lots of different ones. GTA 4 and 5, limbo, smite, Dino d day, Batman Arkham city. A few more as well.

What was the very first thought that popped into your head?

To be honest, I kind of wanted to die. My whole life changed and it was so scary.

Creatinine? Urea? Self confidence level?

No idea to both of those questions lol

Honestly; it’s been pretty low lately. It’s hard to feel pretty when you have a plastic tube stuck in your chest.

Did you ever find out what caused it?

No I haven’t :(

What's something you wish people would ask? Or something you want people to know?

I want people to know that it’s reallt annoyed to be asked how I’m feeling all the time. I don’t like being reminded that I’m sick.

I know that’s not their intentions but I can’t help but feel a little down when people ask me that.

Oh gosh, that is a direct heart catheter for emergency hemodialysis?

That sucks.. have they figured out what caused the kidney failure?

I was diagnosed with end stage kidney disease 2 years ago, over Christmas, when I was 34. Was admitted to the hospital for a biopsy and other tests. I'm going to be starting dialysis early next year.. I've beaten the doctors expectations so far! I was at about 15% as well, they expected to need dialysis within 6 months but here I am 2 years later. Down to about 11% now.

Anyway, worst part is they have no idea what caused it. All tests have been negative. I even paid $500 for a genetic test but it was inconclusive...

Good luck! Find yourself a live doner!!

No it’s just a normal catheter I guess, I had an emergency catheter put in when I was first admitted to the hospital but it was in my neck. They haven’t figured out was caused it yet.

That’s crazy... sorry to hear that. I hope everything works out for you.

Did they give you a strict Renal Diet and Fluid Restriction to follow?

Oh yeah.

What was the last thing that made you laugh?

Jesse from breaking bad saying “ricin beans”

Fucking hilarious.

What are your medical expenses like?

I have none.

I live in Canada.

I’m under 25 so all of my medications are free, I have 6 different prescriptions.

What reaction would you have to your donor? Obviously you would want to thank them, but would you prefer to meet them or not? Good luck with everything!

I would be so thankful. I’d definitely want to meet the person giving me one because they are essentially saving my life.

I'm a dialysis tech who deal mostly with older folks while most of them won't get a shot at a kidney transplant. I'm optimistic for you getting a new one! My question is what is your routine outside of your typical treatment schedule?

I usually wake up around 9 am, sometimes I sleep in though. I’ll make myself some breakfast, take my medication.

After that I’ll usualy get dressed, brush my teeth, do my hair. I’ll go on my computer check my emails and steam inbox. I take a couple online courses so I’ll atudy a bit for those, then I’ll watch some Netflix and relax, sometimes I go shopping, wrap gifts for Christmas.

Then I have dinner, watch more Netflix and go to bed. Pretty boring days mostly

When you have your new kidney and you'e hopefully doing well again, how are you going to pick up you life again? How did this health issue at such a young age influence your views about-/ plans for the future?

I plan on going back to school. I was taking biotechnology but I think I might pick a different major when I go back. I haven’t thought about what else I’d like to do besides school.

I don’t think about the future too much, I have to live for the present.

Is the kidney issues the only problem you are currently facing or is it part of a larger group of health issues?

It’s mostly just the kidney issue but I have had fluid build up around my heart a few times as well.

What is your outlook on life now that you e received your diagnosis?

How likely are you to find a matching donor? In Canada my family friend had to wait for years to receive one. I wish it’s different where you’re from.

Best of luck to you.

I’m trying to think realistically about the whole situation, but I’m optimistic.

I live in Canada as well actually! 🇨🇦

I have lupus and haven’t been diagnosed with end stage yet, but I’m hovering around 13% function. I’m going in today to see my nephrologist and to be honest I’m having a panic attack at work.

How did you deal with getting the port for dialysis?

I hope everything goes well for you. I don’t know how you are feeling, all though I’m sure you are nervous. Just make sure you’re thinking about everything realistically, but be optimistic. It helps.

It wasn’t painful at all. The freeze the whole area so all you feel is pressure when they put the wire in.

After the freezing wore off I was in a little pain but Tylenol helped with that.

You a MondayWedFri dialysis peep or more of a TuesThursSat kind of guy?

Tuesday Thursday Saturday:)

Not really a question but my brother was diagnosed around your age and had to go through dialysis. Now he's in a great relationship and just had his first kid.

All you need is a a good attitude and you'll be good! Good luck with finding the transplant and treatment and I would love to hear your progress!

Edit: Well since I have to ask a question, you nervous for dialysis?

That’s amazing! I hope that can happen to me some day.

And to answer your question, no. Dialysis is so boring I just sleep the whole time.

Why are you avoiding the question? What caused your kidney failure?

I don’t know! I’m not avoiding the question.

Were you having weird colored or smelling piss leading up to this?

Never

What are you most thankful for in life? What brings you joy, and what makes you angry?

I’m most thankful for the Canadian healthcare system, it saved my life and I didn’t have to pay a dime.

What brings me joy is just being able to be around my family.

What makes me angry is thinking about how I may never find a donor, and I’ll be on dialysis for the rest of my life.

Will you be getting an av fistula soon? Hope your treatment goes well, stay strong and stick to your diet!

I’ve been considering it! I think I’ll be doing the home hemo though.

How has your "overweight, diabetic step-father" been during this new period of your life?

edit: these are OP's words from previous posts where she complained about how he criticized her eating choices. It's a legitimate question as to whether he is in the I told you so camp or if he is being supportive.

He’s been saying how much he’s glad he’s not on dialysis, and he of course constantly makes comments about my eating habits still. So yeah, not much has changed lol thanks for asking.

Sup. Big weekend plans?

Haha none at all. Dialysis on Saturday 👍

Don't take this as a unimportant question please. My 4 legged kid has kidney disease that is slowly progressing. My question is are you in pain if so how much?

No I’m not in any pain.

Have you setup a Will yet?

No I haven’t.

I don’t really have any assets or anything so I don’t think I need one.

My cockatiel would sing to your tube and play with your nose ring

Wait, I need a question

Do you have any pets? What kind of pets are your favorite? If you could have any pet in the world and have it's needs cared for what would it be?

Lmfao that’s hilarious.

I have a dog.

I like cats though, I wish I had one.

So... What's the game plan?!

Kidney transplant hopefully, then on with my life!

Have you talked with a physician about having a fistula placed in your hand? Will save you down the road with lifelong dialysis.

I have talked about it. Don’t think I’ll do it though.

What’s your favorite pizza topping and do you like bacon?

Favourite pizza topping would probably be hot peppers.

I like bacon but I try not to eat it too often.

Why do you think people with deadly diseases like yours are happier day to day? They're pleasent around people and never give off signs of depression while normal healthy people can be some of the biggest pricks

I was just thinking about that actually.

I think it’s because when you’re genuinely sick, like life threatening sick, you don’t want to think about it. So you pretend everything is okay. But I find lots of people who seem to have a perfect life and nothing to be upset about (imo) get all depressed and they want sympathy.

People who are genuinely sick usually don’t want sympathy, we hate the attention.

Did you go through the stages? If so, what was tried to halt the decline? Wife has third stage.

I’m not sure really, I never see my doctor or visit a hospital unless I think I’m dying.

It was all so sudden, I knew my kidneys were shit but I didn’t know I had end stage kidney disease I kind of just found out. I didn’t see it coming because I was so naive and refused to take care of my body.

What games do you play on steam?

I play a lot of different ones. I was just playing Batman Arkham city yesterday.

Yo, have you looked into peritoneal dialysis? It's what my dad was doing for the last few years and he liked it way better that heamo. You can do your treatments at home so you don't have to catch scary shit at that dialysis clinic.

Yeah I’ve thought about it! I think that’s what I’ll be doing soon.

Crazy. What are some things you feel you've taken for granted in life?

Showering! The catheter in my chest can’t be submerged in water so I have to avoid getting it too wet in the shower, otherwise the dressing comes off and I risk getting an infection.

How has your perspective on the world changed? Do things you used to worry about seem more trivial than they did before diagnosis? Best of luck with the transplant!

Definitely.

I think most people take life for granted.

I truly can appreciate the little things in life. Like being able to have a baked potato when my potassium level is normal, or being able to drink a little bit more water one day because I know I’ll be going for dialysis the next day and the fluid will be coming off.

ever considered Islam?

Haha no I haven’t.