Views from the Chair (or Bed): Is Home Dialysis REALLY Better?

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on May 25th, 2017.
Views from the Chair (or Bed): Is Home Dialysis REALLY Better?

We home dialysis advocates can talk until we’re blue in the face, but what a lot of folks who need dialysis want to hear are the opinions of others who are in the same boat. Recently, the question, “Is home dialysis REALLY better than in-center treatment?” was asked on a social media site. The answers warmed my heart!

A small handful of folks said no

(in one case due to a misconception (in bold, below) that the group rapidly corrected):

  • ”No.”
  • ”My husband just started dialysis 3 weeks ago he does it in the center if we were to do it in the home there's lots of things that are involved with everything has to be sterile so this is the best option he goes to a five-star DaVita Center the nurses and the staff are just fabulous awesome”
  • ”I prefer in the unit dialysis, don't like home haemo.”
  • ”I could not do this alone at home. I appreciate there are people to talk to - staff and patients - who make the time spent in the chair tolerable."
  • I was told I could do PD at home. But I didn't want anything coming out of my body. I just don't think PD is good for me.”
  • ”I think it depends on your situation. I did PD at home, and aside from the fact that it wasn't as effective for me as it is for other people; it was extremely stressful because my kids inevitably needed something dad couldn't take care of as soon as I hooked up to the cycler (I needed to start at 7pm). I'm now on in center hemo (with the very best nurses and text), and loving every second of it. No one bothers me and I don't have to handle anything myself.”
  • ”U can get more dialysis, do it when u want and have less restrictions...but I like in center cause u get to socialize, if it health gets in trouble u have many hands on board that can help and I never shorten my treatment and just take.my pills as directed. I just do what I'm suppose to be doing for my health.”

However, 31 folks simply said YES; Yes, yes, yes; 1000x yes; Yes!!!!!; or Absolutely!

  • “Best decision we ever made when it came to his dialysis (except for getting on the transplant list)”
  • “Yes! 10 years at home. I'm convinced I wouldn't be here if I was still in center”
  • “With home dialysis I am the Bus Driver - no longer just a passenger.”

PD proponents weighed in on their choice:

  • “I’m freaked out about needles and blood so PD is a great option for me. I have a cousin that does HHD and loves that option. I did in-center hemo briefly and had a few scares. I passed out once because they took off too much fluid, got a blood clot around my catheter, and my blood kept clotting on the machine. I was happy to change to PD”(
  • “Doing PD at home pulls more fluid off and you do daily instead of three days a week.”
  • “PD is great and you don't have to have a care partner for it. Feels much better than Hemo to me. You can travel, etc…”
  • “It has its perks like not having to leave the house and you can do it at your convenience. But downside. You can easily get an infection. Talk to your nurse and doctor”
  • “No cramps, dizziness, no low blood pressure, more energy.”
  • “I have to drive an hour to and from center. Lately I'm leaving center heavy, due to having to be shut off due to very high BP when I start and then a massive drop an hour into my treatment. It's very frustrating. I pray PD works for me to free up some of my life. I'm sick and tired of being sick and tired.”
  • “I love PD.”
  • “You will learn manuals first. There not that fun. Once you go to the cycler much better.Tell your nurse when your ready for the cycler. Much more relax.”

Interestingly, even though folks on PD in the US outnumber those on home HD about 10:1, there were so many more home HD than PD testimonials that I had to divide them into categories. Several people even used the same phrase (in bold, below).

Home HD - Feels Better:

  • “Yes it makes a world of difference in how you feel. I do home HD and would never go back to in center.”
  • “My husband has to because his blood wasn't getting clean enough at clinic.”
  • “It made a world of difference with how my hubby feels and can have time to do thing at home. We love it.”
  • “I started with my husband’s home HD last spring. It has made a world of difference in his overall health. Hardly any diet and fluid restrictions. His labs have been great and he's gained some weight. You have control over your schedule. Thank god for home HD.”
  • “For me, 100% better.”
  • “My opinion and stats say yes! Also from personal experiences! I loved home HD! I always felt better.”
  • “When I started home HD, it was during the day for 3 1/2 hours at a 400 blood flow. A couple of years ago I started nocturnal. Now, I run 6 1/2 hours at a 270 blood flow. It's the best dialysis they have—close to a cadaver kidney transplant. You feel awesome compared to in center and PD. I would never go back in center.”
  • “There is no comparison, I've been on home HD for 1 1/2 years and I feel like a million $, I did not do well in the clinic.”

Home HD – Gives You More Control:

  • “When you are doing your own medical care, you tend to be more cautious than if you are in center. Staff isn’t sticking themselves, so if something goes wrong they aren’t the ones suffering.”
  • “Doing it at home you are 100 percent in control.”
  • “When you do home dialysis, your nephrologist will come to get to know and understand you and your situation far more intimately because you actually have monthly one on one consultations which means your doctor is typically much more willing to work with you to find the right balance and the right approach.”
  • “I’ve been doing home HD for a long time and have never gotten an infection. When I was in-center I sure did.”

Home HD - Fits Into Life Better:

  • “Being able to dialyze more and work it around your life can never be a bad thing.”
  • “My mom has been on home HD since last winter, and feels sooo much better. No more commute to a center, no more low blood pressure issues, our choice what time to do treatment, 5 days per week so she can have far more variation in foods and we can choose which days. The staff at the center were wonderful, but the comfort and control at home is great!”
  • “I did 5 years of in center and have been on home HD for 4. I hope I NEVER have to go back to in center! Home HD is easier on the body and you can plan dialysis around your life instead of the other way around!”
  • “We take our NxStage unit in the motorhome. Imagine hot springs, south of Death Valley. Craters of the Moon casinos in Las Vegas. Yellowstone or Zion or Glacier National Parks. You can be free as a snowbird!”
  • “I miss the friends I made at clinic. But home HD is a better lifestyle. better clearance, no chair waiting time. It’s scary at the beginning but the more confident you get the easier it becomes.”
  • “Nocturnal home HD is easier on your body than in-center. It allows you to drink and eat as much as you want between treatments. Dialysis is done at a slower speed and over 8 hours while you sleep, leaving your days free.”

Finally, one person who has done PD, in-center HD, and home HD took some time to describe the impact of all three.

“I think that the only benefit of PD over HD is that you don't need to use needles. Home HD has better outcomes and is safer for you in the long run, than PD. I have had a needle and blood phobia for all of my young life and a good part of my adult life I did PD for 5 years for this very reason ... I ended up having to switch to HD, as PD was diminishing in its effectiveness. The longer I was on it, the greater my fill volume became until it was just too much.* I was filling 3.5 liters each fill, was doing nocturnal + 2 daytime fills. So, I started out in-center but switched to home HD when I lapsed in to a diabetic coma after coming home from treatment (I'm not diabetic, that's how badly in-center HD messes with your system!). Of course, those first couple of sticks were stressful. As a wise person once said, you don't know how strong you can be until you need to be strong."*

Almost 10 years later, I can confidently say that home hemo saved my life and gave my kids their father back. I have done almost all of the different modalities (available in the US) in the past. I've been doing nocturnal home HD for many years now and firmly believe it is vastly superior to all other forms of dialysis (available in the US). For me, it was at least on par with transplants.

With nocturnal home HD you run over a longer period of time, which allows you to run the blood pump speed at a much lower rate and also set a much less aggressive ultra filtration rate. That is much better for your heart and you don't really experience cramps, headaches to anything like the same degree as in-center HD.* As a result of longer, more frequent treatments, you also experience better phosphorus and potassium clearances, meaning less dietary restrictions. Of course, moderation is the key, but every dialysis patient would agree, a small piece of chocolate is better than none at all, right?? Also, because you can spread fluid removal over a longer period, you don't get that washed out feeling AND you have less fluid restrictions. I started on short daily HD, which is still much better than in center, then gradually moved to nocturnal. SO,you can do it in smaller steps which is much less stressful.*

I sleep soundly in my bed during treatments. I won't lie, it took a while, definitely on the order of a month, before I could sleep, but with some perseverance, you will get over the initial system shock. The great thing about home dialysis is how flexible you can be. I know some people that mix and match nocturnal with short daily treatments so they can get good enough sleep to be able to function. I have flown home to see my family in Europe and took the machine with me. Nxstage actually sent the supplies to my brother’s house. Travelling does take a bit of forward planning but i was able to spend almost 3 weeks with my family in Europe. I live a very full life on NHHD, I work full time, have two teenage boys and coach my son’s soccer team. Most people are shocked if I tell them I'm on dialysis.”

So, there you have it—what people on PD or home HD tell other would-be home dialyzers. While this conversation was in no way scientific, the responses from the group were overwhelmingly positive. Feel free to print and share this blog post to help your on-the-fence patients see how much better most people feel at home. And, of course, please refer them to My Life, My Dialysis Choice to see what best fits their values and lifestyle.

Comments

  • Dori

    May 25, 4:35 PM

    Hi Kerry--go you! Yes, there is a fee to ship NxStage supplies outside of the continental US. Folks have used various shipping carriers to try to bring those costs down. (Unfortunately, it does not work to ship a PureFlow and make your own dialysate, because the water has to be tested in advance.) If you are on Facebook, I encourage you to join our Home Dialysis Central group! Lots of folks have traveled with NxStage, and they know all the tips and prices. :-) https://www.facebook.com/groups/HomeDialysisCentral/

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  • Kerry

    May 25, 4:27 PM

    I support my husband with HHD & it's been going well for 18 months. We're able to go camping & travel state-side. If one travels outside the US is there a fee for shipping NxStage supplies?

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