I am a Home Hemo Dialysis Patient with Chronic Kidney Disease. AMA.

How'd you go about getting home hemo? Did you buy the kit yourself? Do you operate the kit or does a nurse come in?

I live in Canada, so we have universal Healthcare paid by our taxes. So the dilaysis machine and any supplies needed for it cost me nothing. I run the machine myself with no help from a nurse, I had to do about 8 weeks of training at the start to learn how.

Hello fellow Canadian. As a nurse I am so pleased to see that you are able to provide this vital and life saving care to and for yourself!! Knowing that you can take back much of your autonomy with the chronic condition you must endure gives me great hope for all patients in the future. I hope that you have continued success in everything you pursue.

It’s almost like there is a focus on patient outcomes and wellbeing rather than suckling money off Medicare/Medicaid

Don't get me wrong, there are still great lengths we must take in ensuring and promoting positive patient outcomes, but in-home and patient administered dialysis is a massive win for our universal healthcare system.

It's also really difficult and definitely not for some people. My mom did it for my dad for a few months, took the training, etc. But he died mid-dialysis procedure from a heart attack in March. I think it has upset my mom and she blames herself, though she won't admit it.

I'm sorry to hear that. The problem for a lot of people is that they have multiple medical problems, so it isn't just the dialysis, but heart problems and diabetes and other things.

Do you happen to know how much would such a machine normally cost?

I dont know the cost but I know after 1 year they save money versus in hospital dialysis.

My wife had both of her kidneys removed due to cancerous tumors and has been on home hemo for about 6 months. PD is not an option for her due to abdominal scarring from the kidney removal surgeries. Thus far, we've had a nurse come to the house four days per week to administer the dialysis, but will soon start training to do it ourselves.

How easy is it for you to run the machine yourself? Do you have a fistula, and where on your arm is it? My wife's is such that she basically cannot bend her left arm while getting dialysis, and this makes me question her ability to run everything herself. My impression was that having a second person there was practically mandatory in case any issues arose.

As you can see, I'm pretty blown away that you can do this on your own. :-)

When I first started the machine we had was more difficult to run. The past 3 years I have had a new machine and it is very straight forward to run after you have had training. My fistula is in my lower left arm, generally once the machine is set up and I have put my needles in, I do any adjustments of the machine with my other arm. I do try to move my arm with the needles a bit during treatment because my shoulder will get very sore otherwise.

Do you work full time?

For the first 2 years I was on home hemo I worked, during that time I missed a lot of days of work. I would often not feel well and be very wore out. My wife got a promotion at work which enabled me to be a stay at home Dad and I have felt much better since.

Hello, hope you're maintaining your comfort. Were you able to feel something before you were diagnosed, or was it more of a surprise? Thanks for doing this.

I had reflux from my bladder when I was 5 years old that damaged my kidneys, so this has been a life long experience for me, I'm 36 now.

This may be a private type of message. Don’t answer if you don’t want to or dm me. I am overall a healthy person aside from the end stage renal disease. Have they talked to you regarding survival rate? This is something I try not to concern myself with but it’s hard not to think about.

So this is actually something that interests me and I have talked to my doctors about. The long term survivability of dialysis isn't great, but you have to remember that a lot of those statistics are skewed because the average dialysis patient is sick with many other health problems. For instance a large number of people on dialysis also have diabetes and heart problems. Plus often people on dialysis tend to be senior citizens. So these people obviously don't last long on dialysis, it can do the work of your kidney but can't fix the rest. So someone who is young and otherwise healthy like my self has a pretty good survival rate.

That’s kinda what I’ve heard from my doctors too. My heart and everything else is good. I have related bladder issues but nothing major. Good healthy weight right now. They’ve said similar to what you mentioned. I’m 32 now. Hope to at least make it to 60 lol.

Edit : also, the wait time for transplants is around 5 years here without a donor set up. So I guess long as I’m able to make it that long.

In the past few months I have started doing yoga and it has been great for my physical shape. I have found it hard on dilaysis to exercise because it wore me out. But yoga has been great for me.

Are you able to do anything during the treatment? Like use a laptop or play a game or anything? I know that’s probably depending on placement and such.

I usually play video games, I have ps4 and usually play that to kill time. It is a life saver.

Are you on a specific diet regimen (for example, low potassium foods)? And if so, how has that helped your CKD?

I am on a low sodium, phosphorus and potassium diet. Its honestly hard as the patient to feel the differences that it makes. The one that I notice the most if it is high is my phosphorus, I start to have trouble sleeping and get confused easy when it is high.

I hated that diet so much, but for me it was potasium that would get out of wack (it was hard to give up potatoes)

I miss orange juice the most!

Have you tried soaking your potatoes first? I hope there's a dietitian at your clinic that can help you enjoy foods you love!

Interesting thing my nephrologist told me a bit ago, he said that recent studies have shown that the soaking does nothing and it is actually cooking the potato without the peel lowers the potassium. I have no proof, just a second hand story.

How are you doing today?

Honestly, great. It obviously isn't easy and I would love to get a new kidney, but I think I feel just about as good as a person could who is on dialysis.

Is that a full HD machine? Or does it pull off a smaller amount of fluid like Continuous Renal Replacement Therapy (CRRT, CVVHD, etc.) Just curious, as I've never seen a home HD machine! I'm much more familiar with either Peritoneal (PD) or Prolonged Intermittent (PIRRT) in terms of home use.

Thanks for doing this and good job being able to take a more independent hand in your care!

That is a full dialysis machine, I hook on every other day for 4.5 hours. The centre I do it out of says that after a year they actually save money with home patients versus in centre dialysis.

I heard that in home hemo you can have longer hours like 6 or 8 hours and after having this longer hemo you feel less tired. Is that true?

So some people on home hemo do it overnight while they sleep, which is apparently the best way. They couldn't get the necessary plumbing in my bedroom to put the machine there.

I’d be terrified to do it overnight

Me too! I don't think I would sleep well.

What do you do if you want to take a long trip, like a week? My mother is on home dialysis and wants to visit us. But I have no idea where to even start with logistics.
Do you have any diet restrictions with home dialysis?

So in 2019 my wife, daughter and I took a trip to Disney for a week. I just had to arrange with a dialysis centre there for my Dialysis. I live in Ontario, Canada so my provincial government covered about 80 percent of the cost and I paid the rest out of pocket.
I have diet restrictions of sodium, potassium and phosphorus. As well as, a fluid intake restriction.

What kind of symptoms did you notice that led to your diagnosis of kidney disease? Was it something that you were born with or did it happen later for some reason?

My grandpa died of kidney failure (refused to do dialysis) so kinda curious about the warning signs.

I had reflux from my bladder that damaged my kidneys when I was 5, I'm 36 now. It has been a life long thing for me.

Hi, I have progressing kidney disease and currently my previous conversations about dialysis have been around peritoneal dialysis.

I've been curious about home hemp though as it seems to give a more natural routine and there are some downsides to PD that done appeal.

How do you find your quality of life on home hemo? How intrusive to your life of you find it? Any pitfalls to be aware of?

So my advice as far as the intrusive of dialysis goes is that PD is the least intrusive, you generally do it overnight and the set up and clean up does not take long. So people on PD can live pretty normal lives. It is what I tried first. I'm a bigger guy though 6 feet, 230 pounds, and it didn't work well for me. So for me Home Hemo was the best, it still had a lot of flexibility and I feel healthy doing it.

My quality life is pretty good on home hemo, obviously a transplant would be better. But most days I feel pretty good. My life is pretty well scheduled around dialysis, but on home hemo I choose the times, so if my daughter has a Christmas concert, I just move dialysis to a more convenient time. I dont think there are any pitfalls really, it kinda of is what it is.

I'm giong to have a fistula transposed to be able to start hemodialysis rather soon. How is it? Does the needles hurt a ton? Just any info about dialysis would be appreciated tbh. I've had a transplant before and that doesn't scare me but never having done dialysis, that's what worries me.

So for home hemo I actually do my own needles on my fistula. When I was learning to do them I was terrified! The needles are huge! Now that I have done it for years I dont even notice the pain. Please ask any other questions you have, this is why I'm doing this AMA for people like you.

Massive hat off to you sir for doing your own needles. I was on hemo dialysis at a clinic for a year. The nurses always did my needles. I know how big they are and how draining dialysis can be. I could not imagine doing them myself. Can I ask how often you dialyse and for how many hours ? I used to go 3 days a week, 4 hours each session.

I do every other day for 4.5 hours

I have an odd concern. I'm worried that my fistula is going to start looking like a baseball on my arm after starting use. How did that shape up?

What's the energy level for you like now? I currently work 50 hours a week and really like my job. Good wife and we're fostering a great kid. I worry that my issues are going to make all this hard to do.

https://imgur.com/a/6lze8El

That is how my fistula looks, you can see there is little bump down by hand. But overall it isn't too bad. I only have had one stranger comment on it in 5 years.
My energy level is okay, but I did stop working because that became too difficult.

That’s not bad at all. Mine is closer to the top of my arm for right now but that may change. How long did it take you to notice a difference once you started hemo?

Like a difference in how I felt? So I started on PD and it didn't work for me, and I got really sick and was hospitalized and they decided to start hemo. By my second treatment I felt better then I felt my whole time on hemo.

Are you using buttonholes? It looks great! I’m a home hemo nurse in the states, but new to the role. Is there any advice you would suggest I give my patients? Or advice to me?

I do use button holes, its my understanding that isn't very common in the US to use button holes. But man it is a thousand times easier, as long as you are careful about infection control. But I would recommend it to any patient.

I was a tech and we didn't use them very often at all. It wasn't frowned upon per se, but it wasn't encouraged either. I probably only had 5 or 6 patients out of a hundred that I regularly took care of.

We went on vacation to Disney, so I did dialysis at a clinic close to Disney, and all the techs and nurses looked at me like I was a unicorn when I did button holes. Lol. I got a kick out of it.

Can you talk more about your kidney disease? I have genetic PKD. And what was the process for getting a kidney transplant? Did you know your donor and how long was the wait?

I had reflux from bladder that damaged my kidneys when I was 5, when I was 24 the damage was bad enough I needed a transplant. My brother donated to me, that lasted well for about 5 years and I started having antibody rejection, when I was 30 lost the kidney and started dialysis. I am on a transplant list but I am a very difficult match.

Have you ever done dialysis as a clinic instead of doing it at home? My grandma has had kidney problems for a while and it looks like she may have to start doing dialysis. I was just curious if you have any feelings on the benefits or drawbacks to each method.

So as far as dialysis goes you have 3 main options at most places. You could do home hemo like myself, most people who do this are younger, because setting up and running the machine can be difficult for a senior. You can do hospital hemo/at a clinic, most people do this, you just show up for your appointment and a nurse does all of the work, and there is much less responsibility for the patient. However, there is much less freedom as well, on home hemo I choose when I want to do dialysis, where hospital hemo you are bound to what appointments they have. There is a third option called peritoneal dialysis where a fluid is pumped in your stomach area, generally you do this one at home and some seniors find it easy to do.

My fiancé does peritoneal and it’s been very easy but we weren’t given a choice for home hemo, why did you choose to go that route instead of peritoneal?

I actually did PD for about 6 months, but it never made me feel well, so I switched to hemo. But PD was much simpler to run.

My wife is on HD right now, trying to get home HD, do you feel any more energetic with HD at home compared to when you went to the clinic to do it? My wife is sleepy all the time and it’s tearing us to bits.

I do! The main reason being i can schedule when I do dialysis. I always do it in the evening, so I finish around 9pm, eat something and go to bed. And I wake in the morning feeling like a million bucks. None of that super tired dialysis feeling.

How much does a machine like that cost?

I live in Canada so our taxes provide universal Healthcare, so there was no cost for me.

Hi. What do you usually do for the 4.5 hours that you’re hooked on? Do you have to stay relatively still during the process or can you get up and stretch?

I mostly play video games. I have ps4 and games or Netflix on it usually fill most of the time.

Do you do self-cannulation? Have you ever had to deal with bleeding emergencies at home?

I’m an in-center hemo dialysis technician and these are some of the biggest hesitations/fears my patients have about home hemo. I’d love to hear your perspective!

I was terrified to do my needles at first and now I won't let anyone else touch my fistula. Doing the needles myself, I guess because I'm concentrating causes so much less pain. I have never had a bleeding emergency. I clot pretty quick, I usually only need to hold my sites for 3 minutes after my needles are out.

First, thanks for doing this AMA. It's nice to learn from a dialysis patient's lived experience and most people here on reddit have little personal experience with end-stage renal disease, so this AMA is a public service of sort.

I'm a physician who regularly treats ESRD patients but not long term (emergency medicine). I am familiar with the process but not the details of home hemodialysis. In the US, Medicare will pay for home hemodialysis equipment but most patients receive their hemodialysis in dialysis centers.

My questions for you are:

• Did you feel pressured to undergo hemodialysis at an outpatient dialysis clinic or was home hemodialysis presented to you as an option initially?

• If the option wasn't presented to you by your nephrologist, how did you learn about it and get interested in pursuing this treatment?

• What was the process to initiate home hemodialysis? What hurdles did you have to overcome and did you need to present any sort of medical "good cause" to qualify for home hemodialysis?

• Would you ever consider returning to hemodialysis at an outpatient dialysis center?

• Why did you chose hemodialysis over peritoneal dialysis?

Thank you again for taking the time to educate us about your lived experience.

I'll number your questions to answer easier.

1. Actually it was probably the opposite they encouraged me to do home hemo because of my age.
   
2. They had a nurse come and speak to me about PD, home hemo and hospital hemo and talked about the benefits and drawbacks.
3. You go for an interview with the home hemo team, and they decide if you would be a good fit, they warn you that at anytime during your treatment if they feel you aren't understanding you could have to stop. I'm sure they take your medical history into account before accepting you.
4. I would never return to regular dialysis. The freedom I have at home is amazing.
5. I actually did PD for about 6 months. I never felt well on it so I switched.

How long did your transplant last if you don't mind me asking, and how drawn out was rejection?

My kidneys shut down 4 years ago and I spent 3 years on a mixture of peritoneal dialysis and haemo (couldn't do the home version I had a tunneled line and was too freaked out to handle it). I had a live altruistic donation 1 year and three days ago and it's working amazing. My eGFR is stable at about 110 and I'm basically like every other 26-year-old, but I'm yet to experience any sort of rejection episode and I'm really nervous that it will come on suddenly. Ckd and dialysis was an awful experience so I'm really worried about needing to go back on it. If nothing else, I hope you're managing well with the haemo-hangovers (my term for the fuzzy head I used to get after a 4 hour sesh) and I'll keep my fingers crossed you get transplanted again soon.

My transplant lasted about 6 years but for the last 2 years I had a lot of rejection. Mine was sort of atypical though. The prednisone I was taking for my transplant ruined my hip, and I had a hip replacement. While I was in the hospital for the hip replacement my rejection started and it just never stopped after that. They aren't sure if something with the hip woke up my antibodies or what.

Do you still pee? If not do you miss it?

I no longer make any urine. I do miss it because I'm restricted on how much I can drink, which is hard some days.

How hard is Dialysis on you? Reason I ask is I feel it was so hard on my mom it killed her.

I'm fairly young so I think that helps. But it makes you very tired afterwards, is very limiting because your ability to have a life outside of dialysis is limited.

Have you ever heard of the home dialysis unit called Tablo? It's up and coming and looks promising for HD patients at home!

I haven't but I will read up on it. I enjoy about advances in the dialysis and transplants.

Hi, two questions:

1. Would you tell other CKD patients that the procedures and training you went through to do at-home dialysis was worth it compared to needing to go multiple times a week to a dialysis center?
2. What would you tell CKD patients who are new to the disease, which you wish you had known when you first started needing dialysis?

Thanks!

The training is absolutely worth it, it is so much nicer to do dialysis at home, hospitals and dialysis clinics are such depressing places, where as I can be home with my family. I would tell CKD patients to listens to your doctors and nurses, follow the diet, do your dialysis, you will feel so much better.

Is there any way to convince other chronic kidney disease patients to actually keep up with their dialysis? There are patients in my hospital that are frequent fliers because they just don't wanna go. Note that this is in the US, but the patients in question have their dialysis covered by their insurance, so it's not a matter of cost.

People are weird creatures. I follow everything my doctor says and I feel great, but I guess people just don't like being told what to they can eat and drink and what time to show up for appointments.

Ah that makes sense. Glad it's not a fear thing, which was what I was thinking it might be. But to me, even something as scary as an appointment is better than feeling acutely ill and ending up in the ED, especially now that there's a pandemic raging on. Guess we gotta keep trying to gently encourage them to take an active part of their own health.

Ya I did hospital dialysis for about a month while I was waiting to start training for home hemo, and it was so depressing going into that ward 3 times a week. Everybody is sick, there seems to be a lot of people missing limbs (i guess from diabetes). Just not a happy place.

Can I ask what dialysis is like? My husband had a liver transplant this year and still needs a kidney as well which he's currently waiting for. I'm not allowed to see him and we haven't been able to talk since March, before his first transplant, but he's been on dialysis since then and I have absolutely no idea what it's all about! I'm dying for some direct, first-hand accounts on wtf he's been going though. I know you're not the same and not in The States but I'll take any sort of insight. Also, with luck, we will be together again someday, as a partner, any tips on what to expect?

So if he is doing hemo dialysis he will be hooked up to a machine for 3 to 4 hours and his blood will run through a filter that acts like a kidney. The actual process of dialysis is fairly painless, you have to sit fairly still during it. Afterwards you feel very tired and just want to sleep.

In-center dialysis RN here. There seems to be a push for home/peritoneal dialysis here in the US by the gov’t so all our patients are given these options and educational materials as well. As someone who did all 3 (in-center, home and peritoneal), what would you say are the advantages of one over the others? I know fear of being alone (with no nurses or technicians around) and infections are the most common reasons why our patients are hesitant to try other alternatives.

Hospital hemo: Advantages: the nurse does all the work for you, you just show up and get dialysis and leave Disadvantages: Hospitals are depressing places, they are covid hot spots, and you have follow there schedule. PD advantages: easy and straight forward. You can do it overnight and keep much of your freedom Disadvantages: permanent tube in your stomach, it can easily get infected and you have to be careful about getting it wet. Home hemo: advantages: you are at home, you choose the schedule and have freedom Disadvantages: the machine is complicated, and can be scary if you aren't confident in your abilities.

How often must you treat yourself, and how long does it take?

I do dialysis every other day, for 4.5 hours.

I used to work at a company making home dialysis machines (not this one) so it's cool to see it from the other side. Is your one easy to use?

This one is fairly easy and has very few issues during treatment. I use to have a different one (fresinius 2008k) it seemed to have many more issues and weird alarms during treatment.

What machine do you have now?

gambro ak98

what blood type are you? are you on the transplant list? I lucked out and got my kidney after a year of dialysis

I'm A+, I'm actually on the Canada wide transplant list because I'm a very difficult match. I'm 99% sensitized, so basically 99% of kidneys won't match me.

Hello, I currently have CKD. I am planning on getting on PD in the future and currently seeking a donor. I appreciate you taking the time to do this AMA. I’m young and really don’t feel much symptoms but fatigue. If you don’t mind sharing, what were some symptoms you felt once you had kidney failure and had to go on dialysis?

Fatigue is defintly a major symptom. I also very regularly had an upset stomach, and would get diaherra (fun times). Another one that I remember was the rotten egg burps, I guess they are caused by your urea being to high.

Rotten egg burps are the worst!

It really was my least favourite thing, I was so self conscious that my breathe stunk.

How is it?

I also have CKD and am currently on the waiting list for a transplant but they’ve also told me this is Plan B.

I worry about playing with my 1 year old mostly so I’m hoping plan A, the transplant, is first.

A transplant is always the best option. But you can live a fairly normal life on dialysis.

My dad was doing dialysis at a clinic for many years before passing away. He would always tell me how tiring it was for him and how a lot of dialysis patients get depressed. Is that something you would confirm and do you feel that doing your dialysis at home is less tiring? Do you do it while you sleep, and if not, why not?

Dialysis is very tiring, its a weird tired, you almost need a full night's sleep before you feel good again. I do dialysis in the evening so I can just go to bed after, it works much better for me that way.

What do you wish people knew about being a home hemo patient, or about your experience in general?

I think that it can be a positive experience. Yes it is hard but you can live a fairly normal life.

My best friend was recently diagnosed with a kidney disease, and the doctor predicts he might need a kidney transplant in ~5 years. Is there anything that your friends did that you were grateful for, or anything you wish someone close to you did? The only thing I can think of is being supportive of the diet that his doctor has been putting him on and being mindful of that when picking restaurants to eat at when we hang out.

Just be supportive, you realize fast who your real friends are when you have health problems. Some friends stood by me and supported me and some I never heard from. The best you can do is be supportive and just do normal friend things, sometimes some normal life is great.

Is it hard having your dialysis machine staring at you all day? My son has ESRD and he is worried having hemo at home, he will always feel a slave to it, never pretending to be normal

There are defintly trade offs. Yes it is weird having a dialysis machine in my living room, but I would much rather have that then having to go somewhere else for treatments for hours multiple times a week. Basically you have to choose what is right for you, this was right for me, but it might not be for your son.

Hello thank you for doing this AMA. How long after your transplant did you need to go on dialysis? Did your creatine and gfr greatly improve after transplant?

My transplant lasted about 6 years, before I started dialysis. Transplants are amazing, I felt so much better even right after I woke up.

How often do you get labs drawn and how often do you see your nephrologist? What kind of access do you have? Are you still making some urine?

I draw my own blood once a month and take it to the lab, I see my doctor every 3 months, and I have fistula on my lower left arm. I make no urine.

I’m 29 years old and I have pkd and also on dialysis but I’m doing PD. Did you choose hemo over PD?

I actually did PD first, I never felt well on it and switched to hemo.

Very different than the machine We used with my Dad. How often do you do your treatment? What are some of the problems you've run into and how do you get support for that "in the moment?"

I do dialysis every other day for 4.5 hours. The major problem you can run into is if you take too much fluid off, you can drop your blood pressure and pass out. I have done this once, it wasn't fun.

How long did your first kidney last? I was also born with kidney failure, and Ive had 2 kidney transplants, I had my first transplant when I was 7 and it lasted a little over 12 years. I've been fortunate enough to never have been on dialysis, But from what I've heard it's not fun, So I hope you find a new kidney soon!

Also follow up squestion have you ever heard of the world transplant games?

My transplant lasted about 6 years. I have heard about the transplant games but have never gone.

How has living with Kidney Disease disease affected your quality of life? As a future Occupational Therapist I am interested in knowing what you feel has been the biggest impact of living with KD and having to complete dialysis sessions? Thanks for sharing.

It sorta has just become my life everything revolves around it. From what I eat, to how I schedule my day. It has become my new normal.

Do you know how you developed Chronic Kidney Disease?

I had reflux from my bladder when I was 5 that damaged my kidneys.

How did you ended up needing a Dialysis unit? I also just had my kidneys blow up is there anything advice you'd give to people about dealing with ESKD?

Hello, I’m not OP but I myself have been living with CKD for 10 years or so. My advice to you is to maintain a friendly CKD diet and try to start omitting salt from your diet. My second piece advice is to start educating close family and or friends about your dietary restrictions for their support. Personally diet is key to maintaining or improving your kidney function. I wish you the best.

This is great advice!

Was it hard to learn how to do your dialysis at home? Working the machine and accessing your fistula? Is there something you wish doctors or nurses knew about your day to day life? (I’m a nurse not on a dialysis unit but do occasionally have patients on dialysis)

I did 8 weeks of training to learn the machine and another 2 weeks to learn my needles. I'm a fairly technical person so I found it pretty easy to learn, but I can see how some people would struggle.

Is there something you wish you had done more carefully before you got to the chronic state of failure?

For me there was nothing that could have stopped it, my kidneys were damaged as a child and slowly got worse to the point they did not work.

Have you considered doing peritoneal dialysis? Or are you limited to hemodialysis?

I did PD for about 6 months. I never really felt healthy well doing it. So I switched to hemo and have felt great since.

Was peritoneal dialysis an option for you, and if so, is there a reason you chose home hemo instead of home peritoneal?

I actually did PD before I did hemo and didn't work well for me so I switched

I have a friend on dialysis right now, and would love to encourage her or just be there for her during this time. What are some things you think are good for people to know about being on dialysis and the way it impacts people emotionally/psychologically, and how can people best “be there” for folks on dialysis?

That's a hard question because for me when I'm on dialysis I like to be left alone, but others may enjoy having someone to sit and talk to, if its allowed where they do dialysis. So the best would be to talk tonyour friend and see what they like.