My mother was started on dialysis two weeks ago with a tunneled catheter and her fistula is scheduled to be done next Thursday. We hope to have her on home dialysis as soon as the fistula is “matured”. It is great to be able to come here and read other’s experiences with home hemo.
I hope to be able to add our own experiences within a couple of months. Thanks for being here!
Thanks for the welcome. I see from the dates you have listed that you were on home hemo in 1994-1996. I was under the impression from everyone around here that home hemo was an extremely “new” process. Is it because of our location? or are our doctors “out of the loop”?
Actually, home dialysis was around since the very first years dialysis was around but then after sometime they gradually stopped offering it. …well, it’s coming back again now…
However, some Doctors oppose home dialysis…and many areas don’t want to offer it.
I’ve been fortunate that it was offered in my area. I believe it’s your right to have homehemo and not the doctor’s, so follow your heart.
Keep in mind that the previous clinic I was at for 3x a week didn’t offer ho mehemo and I tried getting them to offer it but they declined so I left them for good and met the new opening of Wellbound clinic in my area.
Home hemodialysis is not a new therapy. Prior to when Medicare started paying for dialysis in 1973, about 40% of patients did home hemodialysis. In fact, the expectation was that patients could learn how to do home hemo and often needed to learn it because it was too far to drive to the closest clinic.
Like Gus said, home hemodialysis usage dropped over the last 30 years. As far as I know, no one has studied exactly why this happened. Some possibilities I imagine could affect this include growth in the number of clinics so few patients have to go far to a dialysis clinic, people today often live far from their families and move more often leaving them with less of a support system, with later marriages and more divorces more single may not have a dialysis partner, staff have low expectations of what patients can do because patients are older and may have other health problems, and nephrologists in training (and most dialysis nurses) have little or no experience with home hemodialysis so they’re afraid of it. Successes with daily and nocturnal home hemodialysis in Canada and overseas have sparked new interest in these home hemodialysis options and some renewed interested in conventional (3 times a week) home hemodialysis.
It is your right to learn about all treatment options. No one can force a dialysis clinic to offer every type of dialysis or every machine that’s available. However, supply often follows demand so if enough patients ask for a treatment, a doctor/clinic may start to offer it. If not, you can always look around for a clinic that offers what you want and transfer to it. If your insurance limits where you go, ask the new clinic if it would be willing to provide documentation to your insurance company about the health benefits of home hemodialysis and ask if it would consider contracting with your insurance.
I was told by a home dialysis nurse one of the reason for the drop in home dialysis was because before daily and nocturnal were available the patients at home were getting the same amount of dialysis as in-center. Consequently, they didn’t notice any significant gain in their well-being. Rather than tie up their partner they elected to go back to in-center.
This was true in my case. In fact in my program the single use dialyzer used at home before the daily program started was smaller than the reused F-80 available incenter. So to get the same dialysis at home, running three times a week, I’d have had to dialyze longer at home. It wasn’t until my center offered daily home hemo that I felt it was worth the effort.
I’ve worked in dialysis since 1978 and have never heard this excuse for why the number of patients on home hemo dropped. Maybe the patients that the nurse was referring to were doing dialysis exactly like they did it in-center – the same time of day, the same hours of treatment, etc.
Patients that I’ve known who have done home hemo for years and years often ran longer treatments (or ran every other day) which they would not be able to do in-center. Getting more dialysis let them be more flexible in their diets without adversely affecting their labs. They also did their dialysis at times that fit with their school or work schedule so they were able to continue to work or go to school. This let them have more income to do things they enjoyed which helped their quality of life. Studies have shown pretty consistently that home dialysis patients have higher quality of life and satisfaction with their care. I suspect this is because they’re the ones in charge of their care.
I believe that when staff or doctors discuss dialysis with patients they often focus on what they see as the negatives of home dialysis (the “burden” on family, the need to take responsibility for your own care vs. having a “professional” care for you, having to have the equipment in your home to remind you of your dialysis vs. being able to “forget about dialysis” if you do in-center dialysis). Many of these are just not true. Families worry about patients whether they do dialysis at home or in-center. Patients who take more responsibility for their care do better in any chronic illness. There are many professionals that take care of patients in-center, but there are also quite a few technical staff whose only difference from most patients is that they get the same amount of training that a home dialysis patient gets. Finally, even if you want to, it’s not in your best interest to forget you’re on dialysis whether you do it at home or in-center. You need to follow a diet, take medicines your doctor prescribes when you’re supposed to take them, and you have to live with symptoms which people on in-center dialysis seem to complain about more than those that do home dialysis. You might as well know as much as you can so you can take care of yourself better and do it in the comfort of your own home.
At the same time, there is too little focus on how doing dialysis at home will probably allow you more of a chance of maintaining your lifestyle compared with in-center dialysis where you have to abide by someone else’s rules, schedule, and cope with other people that may not be pleasant to be around (of course families aren’t always pleasant to be around either, but we have to put up with them). Everyone will never be interested in home dialysis, but I believe those that are will live longer and better than those that choose to do in-center dialysis.