Hi, I'm a 30 year old guy who went to the doctor around Thanksgiving because I was having trouble breathing. Turns out I had something called "hypertensive emergency" which is when you have blood pressure so high that it causes organ damage. My blood pressure at the time of admission was 210/145. So I was admitted to the hospital under that diagnosis with renal failure, respiratory failure, and heart failure being the three main issues. Turns out the heart and lung failure were not collapsing on their own but were secondary to the hypertension and the kidney failure.

I spent a week in the hospital, including 4 days in the ICU and now everything is back to normal except my kidneys are failed, I need dialysis three times a week, and I need a new kidney. They also diagnosed me as having malignment hypertension (which sounds like something out of the Lord of the Rings, imo) but it basically is hypertension on crack. Left uncontrolled, my blood pressure wants to skyrocket. It happens to one percent of folks with "normal" hypertension -- which I didn't realize I had because I was doing that late 20s guy thing where I didn't go to the doctor. Don't do that, fyi.

I am currently at dialysis getting my blood cleaned of excess electrolytes which will kill you if they build up too much.

proof: here is a picture of my chest tubes pumping out my toxin riddled blood and the dialysis machine pumping back in my slightly less toxin riddled blood.

https://i.imgur.com/GycNfuY.png

AMA

Comments: 79 • Responses: 24  • Date: 

MetalisDead6 karma

What do you think caused your hypertension? I'm pretty ignorant to what causes hypertension. Eating habits? Life habits? Drug usage? Smoking? Drinking? Super stressful job? Certain life experiences? At any rate, get well, dude! Glad you caught it when you did.

MyKidneysAreBroken8 karma

It is an open question. I'm in pretty good shape all things considered. 6'1" 190 pounds, low LDL cholesterol. I drank but not heavily really. No drugs, no really stressful job.

When I was in the hospital, both the kidney and heart doctors were very confused about what was going on. I guess there are around seven causes of malignant hypertension and I don't have any of them. I, like an idiot, suggested genetics but they immediately were like "yea that is part of it but why you and not your sister" who has healthy blood pressure.

My cardiologist is sort of a character. During the first time he met me, he asked me if I had ordered vodka from Ukraine that was possibly watered down with antifreeze. That is how confused they are with why I developed this crazy blood pressure.

uliol3 karma

By the looks of your skin yes, it almost looks like the guy who was poisoned in Russia. I guess that’s the kidneys. I hope you get better.

MyKidneysAreBroken3 karma

that guy with the nuclear poisoning? I wonder if that would explain everything. haha

anovergy1 karma

Hmm? as Ukrainian I feel bad for people who joke like this. Maybe if you do buy bottle of vodka in some shady places you get what you bought, but in a stores it's all ok.

MyKidneysAreBroken1 karma

I don't think he was joking, I think he was basing it on this.

But it was just such an absurd thing to ask.

SapphireSalamander1 karma

geez this is starting to sound like a dr. house episode

inb4 a doctor said "maybe its autoimune"

MyKidneysAreBroken1 karma

I thought I responded to this, but they actually gave me a lupus test in the hospital. Haha.

Also, I watched season one of House again during my first month of dialysis. Did you know he is a kidney doctor by training? Its annoying because I feel like there are rarely kidney related problems in the show.

SapphireSalamander1 karma

yeah you just responed twice, near the same answer XD

MyKidneysAreBroken2 karma

weird the first post isn't showing up for me. Anyway, his fellowship was in nephrology and also the infectious diseases thing too.

http://house.wikia.com/wiki/Gregory_House

noticeparade4 karma

dude that sucks. i'm sorry that happened to you. your story doesn't quite add up (not bc of what you said, more like it's a medical mystery). do you still make urine? did anyone say if there is a chance that your kidneys recover? did you get a kidney biopsy to make sure it's not something other than hypertensive nephropathy? kind of weird for a 30 year old white male to fry their kidneys just from high blood pressure, especially if you've had no other previous symptoms. are there plans to use something other than that vascath for dialysis?

MyKidneysAreBroken3 karma

Lotta good questions! I can handle these one by one. Are you a nephrologist?

do you still produce urine?

Yea. Today I've peed about 1500 mls and drank 2000 yesterday.

did anyone say there is a chance that your kidneys recover?

They thought for a while that I might have had acute kidney damage rather than chronic, but it hasn't really panned out. My creatinine has once gotten below 4 but my gfr has increased since I got out of the hospital but it is still pretty low.

did you get a kidney biopsy

Yea, the kidney they biopsied had significant scaring. That sucked because the kidney got cut during the biopsy and I had to get a blood transfusion with the hope that the cut would just heal itself. It did, I guess.

plans for something other than the vascath

Yea, I had the "vascular access" appointment to build the fistula. I would think they'd have called me by now to set up the surgery since I was cath'd on like Nov 27 and they're only supposed to be in for 90 days. The surgeon told me that if the transplant process is going super well -- as in I have a donor -- she might not have to actually do the fistula. I guess it is possible that this is happening, but I have no idea how far along any of the people who signed up to be evaluated are.

kind of weird for a 30 year old white male to fry their kidneys just from high blood pressure, especially if you've had no other previous symptoms

Yea, this is basically the story for the whole process. Luckily I went to the university hospital when I was hospitalized. None of the nephrologists understood it either. They told me that my kidney arteries haven't shrunk and neither have the kidneys themselves. My main kidney doctor told me once that "the damage to your kidneys doesn't really match up with the lack of symptoms."

I think their best bet is that I just had too high of blood pressure for too much. I never noticed, to be honest. I didn't get headaches, I didn't get nose bleeds, none of that.

noticeparade2 karma

That is so weird! Shame that the biopsy wasn't more revealing. I hope your treatment goes well and the transplant comes soon. I am a doctor but my speciality is not in kidneys.

MyKidneysAreBroken2 karma

It is possible the biopsy was more informative and I just don't know more. The biopsy results took a long time to come back and the initial overview was not good.

I keep getting excited when my gfr keeps going up but no one seems as excited as me about it. My main doctor said if it goes high enough I can get off of dialysis but I haven't seen her in a while. Now that I think of it, maybe that is why they are waiting on doing the fistula.

If it helps, I guess there is a weekly seminar that many of the organ specialists across the state virtually attend that focuses on strange cases. Mine was that case the week I was in the hospital, but it stumped everyone else too I guess.

Thanks for the questions and for sort of confirming that it is a weird case. I have a friend who is a doctor (an er doctor) and he also thinks the whole thing is really strange as well. He said something about perhaps temporary narrowing of the kidney arteries (he had a fancy medical name for it) that might have caused a blood pressure spike but the fact that I have so much chronic damage doesn't really lend credence to that.

Air_Hellair4 karma

I wish you the best of luck in your treatment and recovery. Has your doctor discussed CAPD (Continuous Ambulatory Peritoneal Dialysis) with you? CAPD was a game-changer for my father in the early '80s. He went from having to go back and forth to the dialysis center, sometimes in distress due to built-up electrolytes, to feeling good nearly all the time and feeling like he was in control of his own treatment. He sadly received an infection due to a hospital visit resulting from another condition, and the nurse staff were not prepared to properly observe his CAPD protocol. But this was back when CAPD was new -- hopefully you can benefit from it and nurse staffs are more aware.

MyKidneysAreBroken1 karma

Yea, PD is a big thing. One of my in hospital doctors was all about it.

I might consider it eventually, but right now I hardly ever feel that rough from my kidney failure. The big thing for me is that I don't want to have to do it every day and I like having two days off in a row. If I weren't peeing out a lot of the electrolytes and felt shit after eating too much salt or something, I think I would feel pressure to try something different. Right now, I don't feel that though.

Dave0r1 karma

The benefit to peritoneal dialysis is that it can be done at home and over night using an automated exchange machine and allows you to retain a much better quality of life

Blood exchange dialysis is much harsher on your system and will eventually cause other problems (calcification of vessels being the worst)

I noticed elsewhere you mentioned a fistula placement. These eventually degrade and need relocating or new ones being fitted and can sometimes even block after fitting. None of these treatments are designed to be life long, and I don’t say that with the intent to upset you. They are a poor facsimile of what your kidneys can do and delay at best the inevitable (sometimes for many years)

PD works by having a tenckhoff catheter (tube in belly going in to your peritoneal sack) where fluid is exchanged in and out generally over night. Fluid is then left in during the day (takes much getting used too and gives you a belly) which absorbs much of the toxins your kidneys can’t. It’s much less harsh and is suitable for patients with less “severe” kidney failure. Sometimes even after trying this method it is still not viable for some patients. Even if for some reason your exchange machine breaks you can manually drain and refill using gravity, slower yes, but allows more flexibility in your lifestyle.

MyKidneysAreBroken1 karma

This is super informative. One of the things that has been kind of hard with this part is that I don't know what I don't know so when people ask me if I have any questions, I feel like I'm content info wise.

I most of this (except that you leave the fluid in during the day) but I felt like I gained context. I will have to think more about it.

Fwiw, it does seem like there are people going through the donation process so hopefully any dialysis choice I make won't be too consequential for too long.

Dave0r1 karma

My dad is B+ blood type (not entirely super rare) and spent 9years on the waiting list

I’m guessing you are US based, im it sure how long wait times are out there (hopefully a lot shorter...) but the wait times can sometimes be very very long 😔

MyKidneysAreBroken1 karma

Yea, I'm O+ which is on the more difficult side to find kidneys where I live but the list is only like four and a half. Luckily I've gotten about five or six people to sign up to be evaluated so far though. Don't know how far along they are. Sorry about your dad. My transplant nurse said she knew someone who waited 22 years!!!!! crazy stuff.

Dave0r1 karma

This is an amazing thing. I think I posted this last night but it might have been removed

https://unos.org/donation/kidney-paired-donation/

The guy who made the algorithm behind that won a Nobel prize

One donation from a paired (or non paired donor) can lead to a cascade of donations from other paired donors. Amazing

MyKidneysAreBroken1 karma

I knew about this program -- my transplant surgery is the coordinator for it the center but I didn't realize there was math behind it. IRL I am a quant social scientist so I think it would be interesting to read about.

She told me that once someone gave an unnamed kidney donation to the hospital and through a series of paired donations, starting with the donated one, it allowed them to place 13 kidneys. Isn't that crazy?

edit: I missed the point of your post though. Yea, hopefully someone is dedicated enough to be okay with me not getting their specific kidney as long as I get one. I imagine the calculus from a donor's standpoint could be different in a paired donation setting but I don't know.

Dave0r1 karma

Heard about the same donor thing. I listen to a podcast called Freakanomics and they had the guy talk about it and where the idea came from. It’s absolutely amazing.

Best of luck mate, the situation you’re in is crap, but from my reckoning you’re strong enough to not let it beat you. While you’re on dialysis make sure they’re letting you have treats 👍😊

MyKidneysAreBroken2 karma

They used to give me this pretty awesome protein bar that tasted just like cinnamon roles but now my protein levels are high enough that I have to bring my own protein bars.

Protein is a very important thing for dialysis patients because if it gets too low, you can't use the dialysis treatment.

If anyone is curious they were zone bars and I had the cinnamon one. The other two are okay (and way better than most protein bars) but the cinnamon roll one is baller.

Anyway, thank you so much for your nice words.

gkiltz3 karma

Do you know where you are on the waiting list for a transplant???

With kidneys an exact match is still best but an inexact match can often do very well

MyKidneysAreBroken4 karma

I would guess pretty low. This just happened like a month and a half ago.

PaulRuddsDick2 karma

Are you already on the transplant list? Has anyone given you an idea of how long the wait might be? Have friends or family stepped up and volunteered to donate?

MyKidneysAreBroken3 karma

I am not technically on the transplant list yet but I will be. You have to go through a mildly long process to be evaluated for a transplant. As I mention in the op, I had secondary heart failure caused by too much fluid in me from my kidneys crapping out. So, they are making me do a stress test to make sure I don't have any other underlying heart problems. I met with my cardiologist last week and he doesn't expect anything, just wants to make sure. I have been given contingent approval pending that. It isn't a huge deal when you get on it this early on in the process because they backdate it to when you first had dialysis, which for me was in November. So I am not too worried about getting on.

In terms of wait, it is like four and a half years in Minnesota someone told me. I am an O+ blood type, which makes it more difficult.

Even though I am not on the list and haven't technically been approved yet, my transplant evaluation went super well and they told me to start referring people to them to be evaluated. I know that some people have started the process but the transplant people won't tell me anything about their status.

There has also been a bit of press locally and nationally about live kidney donation -- some guy wore a tshirt to Disney world and got like 100k shares on facebook. So, it seems like awareness about this sort of thing might be ticking up. It is highly likely it will be my sister unless she gives up without telling me lol.

PaulRuddsDick1 karma

I had a close family member receive a new liver just recently(in their 30's). All the steps sound familiar. I believe that if someone donates a kidney and their existing kidney has issues down the road, that you are instantly put at the top of the list. At least that's what the transplant network here in the Kansas/Missouri area has stated. Might look at that in your area, but just something to consider if someone close to you has hesitations.

Do your research, look at hospitals/transplant centers in your area. Don't be afraid to get second opinions from other doctors. Take charge of your health, take notes, ask questions, it helps to have a close family member be there with you, to help as an advocate. Don't be afraid to question what a nurse or doctor are doing, in polite fashion. Sometimes they do make mistakes. Try to be a friendly and civil advocate for your own health. Always be honest with them, tell them anything you can think of that might have impacted your health in some way. Stay positive!

Good luck, you are way too young for this. Good doctors and staff will look out for you, especially considering your age.

**EDIT Almost forgot, aggressively challenge your medical billing. Be prepared for some HOLY SHIT moments at your mailbox, but don't panic. Most billing errors are fixed easily. Don't pay any bills right off the bat/make sure your insurance has taken their chunk out. You have to be/have an advocate for that crap too.

MyKidneysAreBroken1 karma

That is super interesting about being moved to the top of the list.

Thanks for the advice as well. One thing I sometimes have to push on is not taking too much fluid out during dialysis. I have quite a bit of residual kidney function and when you pull out too much fluid during dialysis, it can stress the kidneys more and take that away. Having some kidney function versus basically having none is night and day. I don't have to be super concerned about fluids, salt, or potassium but if they nuke the remaining function my quality of life would collapse.

So, I always have to negotiate with the nurses about how much fluid to remove.

Thanks again for all the kind words.

plasticambulance1 karma

I did the renal roundup for years on the truck. What kind of items do you like to bring with you? Most of my patients would bring a blanket and a pillow. One kid brought a gaming laptop which was cool.

MyKidneysAreBroken2 karma

I got really really cold early on but I don't get super cold anymore. I do bring a blanket but haven't used it. I recently found out that the machines have blood warmers and it is easy to turn them up. I usually just bring a chromebook and a book. The shift I am on is mostly old dudes who probably aren't getting transplants. Three or four of them watch the same episode of law and order at the same time and then have a running commentary on it. I listen but don't participate haha.

If I had a gaming laptop, I'd bring it. Something to think about.

What is the truck? Like for people who can't drive themselves?

dottmatrix1 karma

Do you celebrate each treatment by eating something really salty afterwards?

(If it seems like a weird question, it was a habit that a friend's family member had after each dialysis treatment.)

MyKidneysAreBroken2 karma

haha, this question rules. To be honest, if anything I miss potatoes and bananas more. But I definitely have feeling after dialysis where I'm like "WELL BETTER GO BREAK SOME FUCKING RULES." I ate some cheese on Friday afterwards. don't tell.

(in all reality, like I've said elsewhere, my food restrictions aren't as bad as a lot of people's yet since I have some residual kidney function. My hope is that I can get a transplant before the rest of that dissipates and I could accidentally kill myself by eating a banana or something. )

dottmatrix1 karma

Awesome. Keep up the good work, and I hope you get your transplant soon.

MyKidneysAreBroken1 karma

thanks and thanks for letting me know that I'm not alone in my parents are not home feeling after dialysis.

isweariwilldoit1 karma

Sorry if this sounds really insensitive, but is it true that dialysis can cure a hangover?

MyKidneysAreBroken2 karma

so the very first time i had dialysis I asked this. She said that it makes you throw up. However, I have gone to dialysis once while hungover (the monday after new years) and I guess it kind of helped. You get some iv fluids when the process is happening so I imagine that was most of it. Also, I guess any residual junk in blood from drinking would get filtered out.

However, the big thing is drugs. I've had like 5-6 warnings about drugs. Don't put drugs into my chest tubes (fucking lol at the prospect of doing that) but also they told me that if you are high on something or are an active drug user for some drugs, dialysis can intensify the withdrawal effects of some drugs. I guess. I don't know much about the drug part.

isweariwilldoit1 karma

So is there no silver lining at all?

MyKidneysAreBroken1 karma

lol no not really. its pretty annoying and has put a pause on a lot of the stuff I had going on. But, there is nothing I can do so there is no reason to focus on those parts.

isweariwilldoit1 karma

Damn man, I’m really sorry. At least you’ve come to terms with it, somewhat

MyKidneysAreBroken1 karma

thanks. you also can't even drink beer when you have kidney failure lol

BrunoPassMan1 karma

As someone who is genuinely getting toxins cleansed from their body,what do you think about people who claim that eg blueberries can remove “toxins”?

MyKidneysAreBroken1 karma

I think it is sort of amusing, I guess. I actually phrased it that way because it sounds fucking awesome. If you think about it, these are things that people with working kidneys just pee out if they eat too much but without working kidneys I could overdose on potatoes.

So, I can understand why people claim it but I've never interacted with one of those people since frying my kidneys. I did make a perhaps an insensitive joke about getting like three vaccinations in a week and being afraid about catching autism to someone who turned out to be an anti vaxxer. Luckily I could diffuse that situation by just saying my kidney related anemia was making me not think straight.

Datapunkt1 karma

You said your blood pressure at the time of admission was 210/145.... what was your regular blood pressure like in the past?

MyKidneysAreBroken1 karma

That is the mistake I made -- I don't really know. I hadn't been to the doctor for 7-8 years probably before this happened. It was never really a problem in college or high school. Unclear when the hypertension developed or exactly how high it was.

raouldukesaccomplice1 karma

I hadn't been to the doctor for 7-8 years probably before this happened.

This is one of those things I don't understand. I say this as a 29 year old man who has nearly always at least done a yearly checkup but doesn't have any chronic medical conditions (that I know of).

I can understand if you don't have insurance, but it bewilders me how every guy my age, including the ones with good jobs/insurance, seems convinced going to the doctor is something you only need to do if you're concerned you might die if you don't go.

MyKidneysAreBroken3 karma

I think it happens a lot. What can I say? I deffo paid the price for it.

also, I didn't even think I was going to die when I first went to the doctor and my blood oxygen was 81. I just thought I had some acid reflux.