Proof: http://imgur.com/FKvfCPz

This is a picture of my home dialysis set up. The dialysis machine is on the left and the reverse osmosis machine is on the right.

Comments: 1078 • Responses: 33  • Date: 

ragby440 karma

In this context, what does end stage mean? Are you dying? Is there the chance of getting a transplant? Hoping the best for you....

rapsjk4707 karma

End stage basically means that my kidneys do not function at all and I rely on dialysis to live. I am currently on the list for a transplant.

tonyaustin6123 karma

Do you expect to live to see a transplant?

Journier178 karma

Dialysis patients can live just fine, the machine takes over for your kidneys. reduced life span most likely, but people can be on it for a long time.

Main point with people on Dialysis however is their co morbidity's. Mainly diabetes, causing an infection which leads to sepsis and then death. But usually they got alot of problems going into dialysis, Kidney failure was just the end result

Fun Fact: once your kidneys stop functioning completely you stop peeing.

jgmedic93 karma

Not a fun fact: If the urea level is high enough in patients without kidney function (Missed dialysis/ARF) they'll sweat it out creating uremic frost.

Journier91 karma

another not fun fact: If uric levels are too high, youll have Uremic Halitosis.

Piss breath.

rapsjk4175 karma

LOL this, I was really sick at one point and my mother as driving me to the hospital and at first she thought we hit an animal but it was just my terrible urea breath.

teomcdohl105 karma

Best of luck to you, OP. My late aunt was in the same position you were in due to damage from type 1 diabetes. It's amazing that now they have this stuff in your home - back when she was on it it was the late 90s and she was making 3 trips a week to a clinic.

Her story was that she got a kidney and pancreas while on the donor list. She lived another 10 years with her organs before breast cancer got her , so I hope you get a new kidney soon and live life to its fullest.

rapsjk435 karma

Thank you

darkhorse3320 karma

How did you qualify for home dialysis rather than going to a clinic?

rapsjk4929 karma

I chose it. I live in Canada so we have free Healthcare so it was up to me what I did.

tuckc89280 karma

Wow. I wish I could say that statement.

skwert99164 karma

In the US, most all insurance will pay for in-center or home the same. The cost to them is similar among all the options. It's primarily a matter of your ability to do the treatments properly.

financiallyanal10 karma

I would have assumed the costs of this machine would be too high...

rapsjk420 karma

My nurse told me, that after one year of home dialysis the machine is paid for, when comparing it to the costs of hospital dialysis, i.e. nurses, doctors, etc.

Shakiata16 karma

Does your city give you a break on water bills. My uncle had the same set up and his water bills were killers

rapsjk423 karma

There is a 10% refund on my bill, plus I can claim the difference on my taxes.

VeniVidiVulva194 karma

What does dialysis feel like?

rapsjk4306 karma

Hemo dialysis doesn't really feel like anything because the machine is just cleaning your blood. Parateneal feels weird because a machine pumps fluid in your belly so with it you feel really full, like you ate a big meal.

HumanSpecimen140 karma

I had my 2nd transplant about 8 months ago. This time I was fortunate it was only 9 months of dialysis.

I considered home hemo but felt more comfortable in the clinic. Is the comfort of home your main reason for choosing home hemo? Any other factors that I didn't consider?

rapsjk4249 karma

First off congrats on the transplant, I hope it is working well. Having the comfort of being at home was one of the main reasons I chose home hemo. The other main factor was I was able to continue working full time and therefore support my family.

finacious138 karma

I do chemical testing on peritoneal dialysis bags (among other things) at a facility where they're manufactured. Anything you think I should know that would enlighten me to how they're used or help me do my job better?

rapsjk445 karma

No not really, you guys who make the bags do a great a job, I never had a single problem with a bag when I was on PD.

Lung_doc104 karma

How many hours does a session take you? And how many days per week?

rapsjk4135 karma

A session takes me 4 hours and I do it every other day. Home hemo dialysis is really flexible and you can do many different options such as 3 days a week, every other day or nocturnal.

B52fortheCrazies73 karma

I'm an emergency doctor in the US. We get a lot of patients sent to us from dialysis centers for a variety of problems including low blood pressure, fever, or prolonged bleeding during or after their sessions. With home dialysis do you have someone there monitoring you? Do you feel as safe at home compared to at a clinic if/when you have a complication?

rapsjk445 karma

Usually my wife is home, but there are contiguous in place for things like low BP (giving myself saline). The only real danger that I would have to go to the hospital for is an air embolism and at that point I'm calling 911.

mydrunktwinsister12 karma

the "usually" in that sentence makes me nervous

rapsjk423 karma

During the training I did for home hemo, I am trained to do all of the stuff as if my wife isn't there,so far I have been able to handle every situation. There is also a 24 hour on call nurse i can phone to answer questions should they arise.

PaleZombie56 karma

Do you know what lead to it (lifestyle, bad luck, genetics?) any advice for others heading toward this?

rapsjk475 karma

I had reflux from my bladder when I was 5. Basically all the urine in my bladder went backwards up into my kidneys and destroyed them. I'm 30 now. My kidneys hung on until I was 23 at that time I had a transplant, which lasted 6 years.

Firkragg37 karma

Considering that I'm borderline end stage although currently stable I may have to face this at some point in the future. Out of the different dialysis options which have you preferred. Also which one had the least impact in terms of interfering with you life?

rapsjk425 karma

At home peritoneal dialysis has the least impact on your life by a large margin. However peritoneal did not work for me, so I have felt the most healthy on hemo.

milkwasnotabadchoice26 karma

[deleted]

rapsjk423 karma

I had reflux from my bladder when I was 5. Basically all the urine in my bladder went backwards up into my kidneys and destroyed them. I'm 30 now. My kidneys hung on until I was 23 at that time I had a transplant, which lasted 6 years.

Aznchicka24 karma

What is the process for donating to you? I'm sure I, and many other redditors would be interested in at least seeing if we're matches.

rapsjk49 karma

I am unfortunately 100% sensitized. Basically if you 90% sensitized 90% of the kidneys that become available won't match you, so because I am 100% technically none will match me, but my doctor has put me on a Canada wide list so hopefully one will come up. My doctor feels the chance of finding a living donor to match me is pretty slim.

throckmortonsign14 karma

What was the cause of your ESRD?

rapsjk49 karma

I had reflux from my bladder when I was 5. Basically all the urine in my bladder went backwards up into my kidneys and destroyed them. I'm 30 now. My kidneys hung on until I was 23 at that time I had a transplant, which lasted 6 years.

jhale9213 karma

My cousin is going into total kidney failure because of a disease. The docs have no clue whats causing the kidney failure so there can be no transplant. What kinda advice or words of encouragement can i give her?

rapsjk418 karma

Similar to what others said, certainly kidney disease is life changing but of any organ that could fail it is probably the best one to fail. You can live a normal life on dialysis.

Lazarus-Long13 karma

What is your blood type and which province do you live in? I'm curious what the waiting period is for other types. I'm on the list as well. With O- in BC I was told it would be a 6-7 year wait.

rapsjk48 karma

I live in Ontario. With a+ blood. My doctor is hopeful a kidney will come in the first year but it could take several years.

Turn47812 karma

Which machine is that? Do you use a fistula or another access type?

rapsjk410 karma

I use a permanent catheter in my neck right now. Two weeks ago they built the fistula in my arm, it will be about three months before I can use it.

Hemorepairthrowaway10 karma

As dialysis machine repair technician, I have to commend you on keeping that [email protected] clean and orderly. Some places just can't seem to keep them looking nice. That said, I've always wondered, do you feel better when dialyzing at home as opposed to a clinic?

Also, what kind of concentrates do you use? Have you been prescribed others, and if so, do you find one to be better than others?

What type of access do you have? Have you had multiple? If so, has one been better for you than others?

I don't really get a chance to talk to patients when I work, and I've always wondered these things.

rapsjk49 karma

I think dialysing at home is more of psychological advantage, being at the hospital three times a week just makes you feel crappy. The concentrates are an acid and a bicarbonate, I am unsure of the exact type, Im not home to check. I currently use a perm cath but will be switching to a fistula soon.

BrownSugarSandwich7 karma

My fiancee's brother has kidney disease. He was so sick and when he finally went to the hospital, they we're functioning 30% and 0%. Some kind of genetic disorder. Because he got sick, his paternal family was tested and his dad and sister both have it, and will likely need a transplant in the future. His was just very aggressive due to poor lifestyle choices. His mother gave up a kidney because he would not have survived the wait list. He's doing well and will need another kidney in about 4 years. Transplants are an amazing thing. I told him about an artificial kidney (internal lifetime functionality) I read about and he was quite excited. Would an artificial kidney be of help in your situation?

rapsjk46 karma

My understanding is they are doing tremendous research into artificial kidneys, but it isn't quite at the point of human testing yet, at least in Canada where I live. But it would be an awesome alternative in the future.

checkthisoutson7 karma

How long was the time between you were initially diagnosed with a condition and end stage kidney disease. I've been living with IGA Nephropathy for a couple years and things are stable for now. Did end stage just creep up on you or did it hit you fast and hard?

Sorry you are experiencing this. I think about what it might be like in my case and try to imagine it. We are hoping for the best!

rapsjk47 karma

I was diagnosed when I was 5 and my kidneys went from 50 percent function at that time down to end stage in my 20s.

chocoboat7 karma

Are there negative side effects to using a dialysis machine? Anything painful, uncomfortable, diet restrictions, etc.?

rapsjk412 karma

Diet restrictions are the biggest thing. I have to watch my sodium, potassium and phosphorus intake. As well I can only drink 800 ml of fluid in a day (they calculate that by the amount you pee, for me 200ml, plus 600ml for sweat and other stuff).

mirpypants6 karma

Do you live in the US? Were there any major obstacles when it came to getting this machine? How is your quality of life? My dad's getting close, only one functioning kidney, and that one is operating at alt 17%.

rapsjk46 karma

I live in Canada, so I'm unfamiliar with the process in the US. In Canada the choice of modalities was up to me.

tyjet5 karma

If you don't mind me asking, how hold are you. You can give a general age range if you feel more comfortable doing so. How taxing is it on your body?

I lost my mom to kidney failure over seven years ago. Hers was due to complications from diabetes. She was on dialysis for a while but her heart was starting to shutdown from the stress that the machine put on her. She was 59 and in very poor health (had previously had a heart attack, had congestive heart failure, etc.)

My heart goes out to all dialysis patients because I've seen the struggle it takes and how it can impact people's lives. I hope you are doing well and I hope you are able to get a transplant!

rapsjk410 karma

I am 30 years old. I dont find it to taxing on my body, but mostly because I still make urine, if you dont make urine all that fluid is kept in your body between treatments which is hard on your heart. Sorry to hear about you Mom.

Saussiche4 karma

can you get an infection from it? if so, have you ever gotten one?

rapsjk45 karma

I have a perm cath that I hook up to, there is a potential for infection if you arent careful. So far I have been lucky and haven't had one.

monkeysareall4 karma

First off I would like to thank you for doing this AMA, kidney disease runs rampant through my family tree. My grandfather, mother, aunt, uncle, and sister have all been affected by the disease. My sister most recently. She us currently doing parateneal dialysis, but depending on how college goes for her she may move on to the type you use do like my mom did. My mother got a double kidney transplant after 8 years on dialysis so I want to ask what the waitlist time is like where you are?

rapsjk43 karma

It can be anywhere from a year to five years for a transplant.

HELLO_SLUGGY4 karma

What are the main symptoms you experience and how does it affect your life?

rapsjk48 karma

If your dialysis is working your symptoms will be minimal, sometimes before your treatment you will start to fell unwell but not every time. But if your dialysis isnt working or you haven't started it yet, there are a wide range of symptoms. Basically all of these following things are caused by your blood not being cleaned properly, you will feel extremely tired, nauseated, itchy, fluid overloaded, short of breath, you may have urea breath, etc.

Undeadzombiedog3 karma

I was recently diagnosed with a kidney disease nothing as serious as yours but I have to take medication everyday and get an IV once a month. It has been really tough but reading your comments and hearing your story helps. Thanks for doing this! My question is what has been the most difficult part for you through this whole thing? (The process? The pain? The family?) I'm very curious to hear your opinion.

rapsjk44 karma

Before I was married, nothing about it really bothered me, it was just my life, however after getting married and having daughter, family is the toughest part seeing how it effects them, makes it even more difficult for me.