Recommend Home Dialysis?

[Kt4920]

Hi - My dad has been on dialysis since October 2018. He seems like he's been getting depressed and wants to now shift to dialysis in the home. We're worried and would prefer him to be under the supervision of medical staff, but also understand how draining it can be to work full time and go to the dialysis center for 4 hours three times a week. We are now also hearing how it is risky to do dialysis at home because of the constant monitoring needed. We're looking to hear some experiences from others about doing dialysis at home.

[CJEF]

I am not sure how my experience might help due to the age I was on dialysis while at home but I can share with you what I remember. Like I said I was younger and didn't have to work so it might not be 100% helpful. When you do dialysis in the home the key things to remember is to of course always do what your doctor or doctors tell you to do. When I was doing dialysis at home I was on it 8 hours then so I got home and prior to going to bed I would be hooked up to the machine and I slept while the machine did what it was suppose to do. Every night prior to being put on and taken off my exit site needed to be thoroughly cleaned and disinfected to ensure it did not get infected itself. If the doctors think he can do home dialysis it is a decision you will all need to make together because there does need to be someone there with him in case of any type of an emergency that could possibly arise when hooked up to the machine. My friend who did home dialysis for years and worked 8 hours did do his at night and it was rough for him but he had to do what he thought was best for him and I believe that is what it comes down to. If the doctors say he can do home dialysis then it becomes a decision you will all need to make together keeping in mind that he does need support there with him as well. I wish you all the best and I hope I helped a tiny bit.

[Kt4920 in reply to CJEF]

Thank you. I know it'll still require more attention, but we're worried about any infections or not being able to get help immediately from medical staff. We know he wants to be at home, but just worried if something happens. Appreciate your response and I hope you are doing well!

[Txgirl16]

My mom was 70 when she did dialysis at home and did great. She was only on it for 6 months before she got a transplant but she had no issues. There are a lot of rules to follow as far as sanitation and such but if he has a good home health place that can get him set up, I think he could do fine.

[Arih]

My husband was on PD (home dialysis) for a year he used to work full time too. He preferred it over going out and it worked well for him. It's just that when he do it at home, there's a lot of care and instructions need to be followed. Cleanliness is must otherwise can have infection ( which he never had, due to extra care). His nurse was very very nice. In rear occassions when his machine wouldn't work or when water bag broke a little he called her late at night, but she was nice enough to answer. The tube is pretty big he could walk around in room and upto living room. His was for 8 so he used to start it accordingly at night so it can be done, before he had to wake up and get ready for work.

[Kt4920 in reply to Arih]

Are nurses an option to have to come or was that a separate service you paid for?

[Arih in reply to Kt4920]

She didn't come. He just called on a few occasions. He used to have regular appointments with them at the dialysis center (Davita), they train you completely for PD and make sure he knows everything. (No extra payments).

[Arih]

Forgot to mention, we even went on vacation. And the delivery was there before we reached. His dialysis center was awesome

[marcyc NKF Peer Mentor NKF Ambassador]

I am a RN as well as kidney donor for my husband. You can do peritoneal dialysis at home or hemodialysis. For both, there are intensive training programs for the patient and care partner. There are RNs and technical support people on call to help. It is a commitment. However patients have a better quality of life. Can do dialysis on their schedule. More frequent slower dialysis produces a better result, less fatigue. Less exposure to disease in center. I did the home hemo for my husband, 5 nights a week for 9 months until transplant. Better for him but yes taxing on me while working full time. Ask any questions. Videos on NxStage site.

[Kt4920 in reply to marcyc]

Thank you! I'll be sure to check it out

[PotatoeBacon]

okay good morning I have not experienced home dialysis but I experienced dialysis for 10 years in the center I grew to have a whole nother family we looked out for one another while we're on the machine we ended up knowing each other's family very well and knowing more and more about being on dialysis as time went on and being on the machine I had a couple of friends that Dad do home dialysis it is a very high risk all the way around at one point my doctors kept trying to push me to do home dialysis because of my age at the time I was 26 he is old and I had just had a new baby and just was about to start dialysis they kept saying if you do home do I was dialysis then you can be home with the baby I told them no I did not feel comfortable you don't want all of that responsibility to be on you or your family or your loved one try to get your dad involved in social activities after dialysis center try to find out who the Patient Liaison is for dialysis. Even though I'm not on dialysis no more since 2016 I am still a Patient Liaison for dialysis patients and now for transplant patients living a healthy Wonderful Life. But I understand the depression part that's why you have to talk to the social worker at the center try to make sure that she can keep your dad involved in activities they may have. As well as the kidney walks those are great to meet new people going through the same thing as we are. I'm not too sure how old your dad might be but I have seen a lot of people go through depression and an older age going on dialysis I went on dialysis at 26 I'm now 40 and I just got off in 2016 I did go through those stages but by me having a baby and a younger daughter it kept me motivated and kept me pushing. But please talk to the social worker at the dialysis center find out all kinds of activities as well as get your dad involved in activities around his neighborhood at the community centers a lot of community centers have programs as well I hope this was a little bit information that can help always praying for you and your family.💜💜💜🙏🙏🙏🙏

[Kt4920 in reply to PotatoeBacon]

Thank you! Helpful info!

[KathleenMA]

Hi - I did peritoneal dialysis at home overnight for 15 months and had no issues (I was in my late 40s). There is a lot of training that he'll have to do and being careful to wash your hands well and keep the site and area clean are very important but it worked well for me. I even had to do a manual exchange once a day at work and that was okay too (I also worked full time). The dialysis machine has a 24/7 support line that I called once because I was away for the weekend and the hotel lost power while I was setting up my machine for the night but other than that, everything went fine. I personally couldn't imagine sitting in a dialysis center for several hours three days a week. I know it's the best option for some but it wasn't for me.

[Kt4920]

He's in his 50s so similar situation. Didn't know about the support line. Thank you for sharing your experience!

[MomofRecipient]

Good morning. I was trained on home-hemodialysis and performed it on my adult son for 17 months. My son's biggest problem was fluid retention, so in the clinic, they had to remove a lot of fluid each treatment. At home, we could remove MUCH LESS each treatment because we were performing it 5 times a week vs. 3 times a week. Each treatment lasted 3-4 hours from set-up to take off. However, please hear, my son physically felt MUCH MUCH better on home hemo. Yet, it was much harder for our family. I don't really feel we were properly trained, so be sure your father and his partner are totally comfortable in their training before he leaves the clinic. We were misled about how time-consuming it is. I had to go part-time at my job. Not only did we have to learn how to hook-up and remove our son from the machine, one has to know how to react to many alarms, how to do emergency flush-back for various reasons, how to perform emergency treatment if necessary, but we also had to draw blood, centrifuge the blood and ship it, give IV and IM medication, order supplies, monitor vital signs and the machine's numbers every 30 minutes during 2-4 hour treatment, and so on. I would do it again because I truly feel it was easier on my son (he received a transplant this past November) but go into it with eyes wide open. I hope my experience helps, and I don't mean to sound negative, but I wish I would have had someone to talk to about it and had been trained better.

[maryalraines NKF Ambassador]

We did the NxStage dialysis inhome & it’s not for everyone. Your dialysis partner & Pt have to go through training & havingvsome medical knowledge is helpful but not necessary. We liked it fir the convenience; we could give on our own schedule, even in the evening while watching TV. We did this as it has less of a chance of infection than incenter dialysis. It’s pirtable and you can travel with it.

Regarding depression...let’s face it this is a terribly depressing disease. I also felt an incenter setting depressing listening to others horror stories etc or unfortunately getting a not so friendly nurse. Not to be unsympathetic but other pts and hearing their stories can bring one down. Try to involve yourself with uplifting people...make that your goal & they will make you feel better. Don’t feel bad about telling your friends, “hey I’m down today I need you to come make me laugh”. Good luck & love.

[mcrain]

I had In Home. I was 64 and worked 2 jobs. It worked fantastic for me. I plugged in at night and slept great. In the morning I would unplug and do the clean up. I was not tired at all. as far as I am concerned it is the only way to go. This is not however that Blood kind. My Dr suggested I go this way and got my hookup done prior before I went on Home Dialysis.

[Vna62400]

It's best to be under the hospital supervision as they are experienced in this field. My friend had home Dialysis and so much went wrong, loss of blood etc and is now back in the care of the hospital, which has set him back been in line for a kidney transplant as he had to have blood transfusions. He also went through depression, but is feeling much better now since there is medical staff watching over him. It is an added burden when you have to work, but you have to prioritise what is best for you.

[Gotthecall_123]

Hi my name is Dave I was on PD ho,e dialyses for 3 years it started becoming a lot more and harder after doing it for three years I must’ve got lazy because I ended up giving me infection which almost kills me 🙏 after the infection I didn’t trust myself to be doing a lot any longer, so I started hemo dialyses, I did that for another four years and finally move the transplant list two months later I got to kidney 🙏 I will be one year strong 💪on 05/24/2019. The best advice I can offer you is to wash your hands often on sanitize before and after hooking up that was very very important almost killed me if you have any questions about home dialysis please don’t hesitate to ask I’ve probably been there and done that 😝

[Kt4920 in reply to Gotthecall_123]

Wow! Congratulations! I'll be sure to visit back and keep in touch here if any questions come to mind. Thank you

[Gotthecall_123 in reply to Kt4920]

After my transplant I started thinking of what I had just gone through in the past seven years and I thought maybe that’s why am still here is so that I can help others I became a mentor for dialysis patients hoping that my experience can help someone else and at the same time can’t help me 🙏😝