A few weeks ago, I read a lively discussion in a dialysis Facebook
group about in-center vs. home hemodialysis. This caught my attention
because these comments, from patients, show us what matters most to
people who are living with dialysis.
Interestingly, in this thread, the positive comments
about home HD exceeded those about in-center by more than three to
one.
This does not prove that home HD is the best choice for everyone. But
it does suggest that more patients are aware of home HD, more willing to
talk about it, and many who have tried it see real benefits.
Here’s what participants said:
“I hate the clinic because the manager wants to take
off more fluid than my body can handle. I constantly get severe
cramps and pass out. I have told them seven times. I can’t handle a
certain amount of kilograms. They don’t listen so that’s why
I’ve been doing Home Hemo going on six years.” |
“I love going to the clinic because my clinic is 5 minutes
from my house, the staff is nice and works with you. I see them more
than some family members. Mentally I can’t handle home. I want
someone else to do it and worry about the machine. When I leave
dialysis, I leave it at the center and pick it back up when I go
again.” |
“I do home. It’s easier on your body and you control
when you do it. Whatever time of day & whatever days as
long as it’s 4 days. Just can’t be 4 days in a row. You have more
flexibility and you can take your machine with you on vacation & not
have to worry about scheduling time in a center
somewhere.” |
“If I could get someone to place and remove
needles I’d do home hemo.” (“It’s easier than you
think,” said a group member.) “The techs can't even get
it so I haven't been able to have my chest cath removed. I've
watched videos and it makes me queezy (sic). Some day maybe,”
responded the original poster. |
“I do solo home HD and the difference of my energy,
mental health, appetite, etc, on home hemo is so significant that when I
started it people around me noticed the change. I used to have
to come home from in center and sleep 4-5 hours. I don’t sleep
at all after a home treatment. You can be slightly more
liberal with fluid intake and diet as you’re doing it more often. I do
it 5 days a week. I highly recommend to anyone.” |
“I do home hemo, but am going back into
center. For me, home has become so involved
that I just live eat and breathe dialysis. There's no break from it so
it's a real mental game stres (sic). Home treatment is a different ball
game than in center you not only have doctor day which you already do
in- center too, but you have all your other doctors to keep track of
then supplies, the amount of trash is overwhelming,
boxes and trash, so yeah it's just it's a lot.” |
Home hemo is better because you get the choice to
scatter your treatments and if you don't feel good in the morning on
Monday you can do it in the afternoon or night or Tuesday etc.
Plus, I think they do four 3 hour sessions instead of three 4 hour
sessions.” |
“I choose in clinic hemo. It's Monday, Wednesday, and Friday
for 3:45 and yes it takes a lot of time but it isn't every night. And I
see a doctor, a social worker, a dietician and a nurse practitioner.
Plus the RN. Every time I go. These people are professionals and were
all trained to do the job. So I feel a lot better in their hands
as I'm not doctor or a nurse. Plus what happens if your
blood pressure tanks when you are on home dialysis all by
yourself?? No one there to shut the machine off or give you
water or to wake you up? That's a chance I'm not taking. |
“Definitely home Hemo! Easier mentally, physically
and so forth.” |
“No! Home hemo is only better for their bottom
line. $$$$.” |
“For me, home dialysis has been better—less stress on
my heart and more freedom.” |
“From what I researched and asked questions, you
pretty much need a home with an extra vacant room to keep your monthly
supplies for Dialysis. I live in an apartment so I don't have
the space to keep supplies in a clean room
environment.” |
“Home hemo you are in control.
Simple.” |
|
“Home is better if you can do it. Shorter run time,
but more days for better cleaning of the blood and fluid
removal.” |
|
“Home hemo is great. Your blood gets way cleaner
then PD or in center. You can pull out as much fluid as
needed, not like in center that pulls out more then (sic) you
need and then comes all the negative effects…” |
|
100%. It's night and day. I never felt like I did in
the center. |
|
“Home is much better. The machine isn’t as rough on
your body and you can run on your own schedule.” |
|
“I have been on Home Haemo for 2 years with no issues.
Home Haemo is a lot more relaxed and you have a lot more
freedom.” |
|
“Home for me was great.” |
|
“I prefer home hemo simply because it’s more often
and doesn’t drain me like in center. I never felt better than
when I went to home hemo. Way more freedom to dialyze around my schedule
and my daily run time was cut to 2.5 hrs max.” |
|
“Home hemo works better for me. I do it when I want
to do it as long as I do it 4 days a week and I don't have high blood
pressure anymore. I have a spare bedroom for the supplies but
it's not as many supplies as peritoneal
dialysis.” |
|
“Home heomodialysis (sic) is much better than being in the
unit, if you are able to do it. Much better for your mental
health.” |
|
“Yes people live longer and feel better with
home hemo vs in-clinic.” |
|
“Home haemo is best imo. I did 15 hours a
week.” |
|
“Home hemo is the best dialysis if done the right way. Based
on studies doing it 5 days a week or more, it is the best at
getting toxins and especially excess phosphorus out of the
body. The investment is in training as well as the willingness
to manage supplies at home.” |
|
“I did my late wife's home hemo dialysis. You can do
it at a time that suits you and no traveling to the
centre.” |
|
This is not a scientific poll, of course. Facebook
threads are open to anyone in a group who wants to add to the
conversation. But, if nothing else, it seems clear that patients
are becoming more aware of the advantages of home HD, and, in
some cases, more willing to try it. Those who have done home HD often
report being happy with that choice.
The larger point is choice. If we truly believe in patient-centered
care, we cannot decide what matters for people before they have the
information they need. Our job is not to steer everyone to the same
choice. Our job is to make sure each person has a real
choice. Dialysis is hard enough. Patients should not have to
find out by accident or on Facebook that another way of doing dialysis
might better fit their life.
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