I just wanted to introduce myself. I’ve been on in-centre 3 x week hemodialysis since my kidneys failed in October 2002. I’m on the waiting list for a transplant, with a few months on hold during that time. I requested a switch to home hemodialysis in late November, and I was finally called to start training last week. So, I have a week under my belt. We use a Fresenius 2008K and an Aquaboss R/O water purifier.
It’s very interesting and exciting, and, a little scary. When you know more, you also realize more all the things that could go wrong. At in-centre dialysis, the same things could go wrong, but you just don’t know enough to really think about it.
I’ve had a lot of new information and procedures thrown at me the first week, but I’ve already set-up and initiated dialysis myself the last couple of days. Now I’m enjoying my weekend break
Hi Pierre, are you going to do nocturnal when you go home? Are you training with a helper? It’ll seem like driving a car before you know it - focus on developing good habits from the start, no short cuts. How long do expect training to last?
I’m planning on daily nocturnal. However, in our local program, they want patients to do a couple of weeks of short daily first after starting at home. Then, you spend 3 nights at the hospital doing nocturnal, with your nurse present, to be sure you respond to alarms, etc. I want to get rid of as much of the dialysis diet as I can, and I particularly want to be able to get my protein from cheese, legumes, etc., so, as I understand it, nocturnal is the way to go for that.
I’m doing the training alone. It lasts 6 weeks, but they can tack on more time if it’s necessary. It’s more a goal than a firm deadline.
I only wish I could have done this 2 years ago. Luckily, I still have a good fistula.
IgA nephropathy since 1978
ESRD and in-centre hemodialysis since 2002
Sorry for all the questions Pierre but I was wondering if you do the buttonhole method of cannulation? I did a nocturnal study and I loved being able to have cereal for breakfast with milk and the milk shakes, love the milk shakes.
What was it that changed over the last two years? Your program sounds well thought out. Is this a Canadian standard or does it vary as much as here in the US? I’d enjoy any info on what is going on in Canada daily dialysis-wise.
Congrats, I was where you are now almost 6 months ago. I trained for 4 weeks and then came home and self dialyze also.
I agree completely with Bill, for the first month or so at home I followed my typed up set up instructions faithfully, then all of a sudden I didn’t even need to peek at them. I’ve got set up down to a good routine that takes me right around 45 minutes from getting up to get the supplies to hitting the dialyze button. Getting off and clean up takes maybe 25 minutes then wait for the heat disinfect to start counting down so I can turn off the water. I’m lucky though as my sites only take about 2 minutes to stop bleeding.
I’m doing 4 hours daily, 6X a week instead of nocturnal as I am just not a good sleeper. My diet is pretty liberal but still need binders. I’ve just switched to a lower calcium/potassium bath so it might even become more liberal (my calcium has been on the high side, and the potassium automatically gets lowered with the calcium so I said great, more bananas and oranges then!!).
Let us know if you have any questions or anything. I got/get tons of help from the experts here and am slowly moving into that category myself.
I plan on using the buttonhole technique. I’ve had 4 treatments so far using the same holes, and you need 5 before you can switch to the blunt needles. However, it’s still up in the air. My upper arm fistula is very large, but twisty, and there isn’t much room between the two aneurysms from 2-1/2 years of in-centre hemo. My nurse is also concerned I have thin walls. So, the neph is referring me to the vascular surgeon for an opinion. If it turns out I can’t buttonhole, they said I would just have to use the regular stepladder method.
I don’t know how these home hemo programs work elsewhere in Canada, except that ours is modeled after the one in Toronto. We have a young nephrologist who is really gung-ho about nocturnal.
I made the decision to switch to home hemo training after first investigating possibly switching to PD. A year and a half ago, I was actually admitted as the backup recipient for a kidney. I didn’t get it, and, this past Fall, after another year had gone by, I learned from the transplant coordinator that not only had I not progressed on the list, I had actually slipped down 16 places. I know there’s more to it than placing in the list, but, still, it began to look like a longer wait than I had anticipated initially. So, I decided to make the switch. I figure that, if I have to wait a while yet for a kidney, daily hemo might keep my heart healthier. I’m no spring chicken at 51.
But I think the biggest inducement for me is the more liberal diet.
Today wouldn’t have been too bad if I hadn’t somehow broken the tip of the 20ml syringe in the dialysate port as I was attempting to check the conductivity with the separate meter. The plastic bit remained stuck in there, and not even the technician could remove it. It was a little embarrassing, to say the least. I’m convinced it was a defective syringe, but, I probably put too much force into it
Pierre, I think you are going to really be satisfied with slow nocturnal. I have been my fathers partner for 4 1/2 hrs. He changed dramatically once on nocturnal. He basically has no diet or fluid restrictions. We find it real easy to sleep through the treatment but it took a while to feel a level of comfort. It is really nice to be able to schedule yourself for dialyisis. Glad you came to the board.
I imagine it will be a little tense when I first do it alone at home. In the program here, trained patients stick with short daily for a week or two, and for the first treatment at home, the nurse comes to the patient’s house.
Big hurdle passed today though. I needled myself for the first time. Like I’m sure it is for many people, this is what I thought would be the hardest thing about learning, but there’s really nothing to it.
Week 2 of home hemo training
On hemodialysis since Oct 2002
Kidney disease since 1978
Congratulations Pierre. Sticking yourself is a real milestone (or kilometer-marker to the north?). Once you make the switch to the dull needles, you will never be infiltrated again. What did you do to prepare yourself to self-cannulate?
I’ve just switched to a lower calcium/potassium bath so it might even become more liberal (my calcium has been on the high side, and the potassium automatically gets lowered with the calcium so I said great, more bananas and oranges then!!).
Which solution were you on previously and which one now? I am on a 2K. I was put on a 1K once when my K got too high and it made me sick. Does anyone know what I mean?
I was on 3K 3Ca, now 2K 2.5Ca, should get my first blood results today or tomorrow. My Ca was running high or 9+ while my potassium was always normal, so I’m looking to add some potassium to my diet, waiting for my results first, and for my Ca to get back to the 8s if possible.
With regard to length, I know that nocturnal has been around for at least 7 years now so I’m guessing there are people who have been on it at least that long.
In Tassin France they’ve been doing nocturnal in-center, 3x/week dialysis for 30 years. I do not know if any one individual has been dialyzing that whole time but some say that the healthiest group of dialysis patients in the world are in Tassin France.
Bernard Charra, is the MD in charge of Center de Rein Artificiel de Tassin, in France near Lyon. Charra himself says in one interview that he has never made the claim that his patients are healthiest (you can read an interview with Charra here) but I have visited the unit in Tassin (in 1996) and I can tell you that they have a very unique program.
The most memorable feature (from the point of view of an American visitor) is that they serve a complete meal during treatment. A steak, baked potato, salad and your choice of beverage – beer, wine, whatever. Very French.
Lynchburg had the second nocturnal home hemo program in the U.S.; the first one was Dr. George Ting’s program in California, so maybe he has a patient who has been on for longer? Or in Canada, Dr. Peirratos’ clinic started even earlier–though not as early as Dr. Charra in Tassin.
Too bad nobody keeps track of this stuff, it would be interesting to know…
Actually there is a new registry of people in Canada and the US who are on more frequent dialysis. It is called the International Quotidian Dialysis Registry and Dr. Robert Lindsay is the person in charge of it. Clinics that have patients on daily or nocturnal dialysis are encouraged to join the registry and enter their patients as a way to track usage and outcomes as well as to compare more frequent hemodialysis to conventional hemodialysis. The website is at www.quotidiandialysis.org/.