The home dialysis unit I go to adjoins the large non-acute hemodialysis centre I used to go to. It’s in a former hospital that is now an ambulatory care centre, which is part of a larger, amalgamated hospital. There are 3 hemodialysis units on 3 different campuses, They all fall under the same organization. Each one has its own social worker, but they all work together and replace each other when necessary. So, when I switched from the regular dialysis centre to the home dialysis unit, I automatically switched to a different social worker.
Speaking of depression, I was getting pretty confident about my ability to do home hemo in a week and a half until they made me read the part about air embolisms today
Yeah, that part is pretty scary, however, I looked at it by thinking how many mistakes I had to make to get air in the system. There are so many safety measures. Even when you forgot to unclamp the venous, alarms went crazy notifying you that something was wrong so you correct it long before air can get to you.
I still leave a clamp on now or then but have learned to watch the chambers the moment I turn on the pump and if they start lowering I immediately stop the pump and find the clamp I forgot. This usually happens when I am interrupted while getting on, so I try to remind my son NOT to come in from the time I am inserting my needles until I am actually on which only takes a few minutes, but at 10 sometimes he can’t help himself!!
In Canada, there’s no billing of any kind that involves patients, since we have universal medicare. There are no expenses whatever associated with dialysis or transplant. The only things not included are prescription drugs other than those given in the hospital or the dialysis unit, but there is assistance available for low income patients. What the social workers help patients with financially are things like disability pensions, social assistance, social housing, transportation allowances, applications for special disabled transport, applications for special drug coverage, etc., when these things are required. There are also occasional needs for moving expenses and that sort of thing when patients are low income. Their help is invaluable. They can get things done that a patient by himself just couldn’t. Some people who have no difficulty on dialysis might not see the need for these things, but not everyone is so fortunate.
The above might fall in the financial area of help, but it’s closely tied with the social/psychological wellbeing of the patients as well. There’s nothing worse than trying to deal with these bureaucratic and administrative hassles they throw our way when we aren’t feeling that great to begin with. In addition to those kinds of things, one of the best things the renal social workers do is to take turns running support group meetings throughout the year. These usually run once a week for 6 weeks, and they involve experienced patients and newbies to kidney failure. In addition to all that, they are there when needed, even if it’s just to lend an ear when there are family and other issues.
I am getting ready to train for home HD and I have some questions about Nocturnal dialysis. Do you have trouble sleeping? What sort of equipment to detect bleeding do you need for nocturnal? Does your arm get sore from having the needles in that long? Do you feel trapped? Are there fluid restrictions? Blood pressure problems? How long did it take to get accustomed to the evening run? How do you feel when you come off - tired or drained? Would you do it differently? I tend to move around alot - is that going to be problematic?
Lots of questions - thanks for your answers.
Judy, I am my fathers partner and he has been doing nocturnal for over 4 years. We have no trouble sleeping. Once the treatment is started neither he nor I give it a second thought anymore. No we don’t feel trapped in fact have never felt so free. Wake up in the morning dialysis is over and your day is yours to do what you want. Treatments can easily be juggled around to fit our schedule. My father had severe hypotension on in-center treatments, since on nocturnal no Blood Pressure Problems. There was an article published stating nocturnal patients had the fastest recovery time after treatments about 7 minutes. This seems to fit in with my fathers recovery time. Bleeding equipment we use those monitors they have for babies which detect moisture. Most of the patients in our program use a fistula, and I haven’t heard any complaints of arms being sore. Hopefully Pat C. will see your post and respond her husband does nocturnal and they would be able to answer your questions on sore arms. I have read many reports from the Lynchburg patients and no one in their program has posted their arm gets sore. Hope this helps
My husband is the nocturnal patient, I do the canulating and setting up the machine for him. He is also on a Bi-Pap with 3l oxygen (sleep apnea).
Once he is on, we go to sleep and sleep right through til 5:00am 7.5 hrs.
There is an occasional alarm, but I get up fix what ever and go back to sleep. He pretty much stays in the same position. He sleeps really well.
Sorry I didn’t answer all your questions. My hubby’s are is not sore. In fact you really can not tell where his button holes are.
He really feels and does so much more since on nocturanl, it is like having him 30 years ago. His spirit is always up.
Thank you for your response. Some great information. I was wondering if your father has had any trouble sleeping during nocturnal? I have a king size bed and my fistula is on my upper left arm. Is it necessary for the machine to be on the left side of the bed? I just keep thinking about the tubing crossing my body when I sleep on my left side (I sleep on the right side of the bed and the machine would work best on that side also). Does he have to lie still and in the same position, do his A&V pressures change or alarm when he moves around? Do you sleep in the same room or an adjacent room?
Judy, The machine can be on either side of the bed. Dad rolls from side to side frequently during the night. I tape the lines to him so the lines go with him and we rarely have an alarm. Once in a while he manages to roll on the line and this is when we get the alarm. It doesn’t affect his sleep because he is so used to me getting up and taking care of the alarm. It doesn’t really affect my sleep much either. My room is adjacent to his and I took out the door and have a long curtain there. It takes me about 10 steps to be at the machine. I just move the line, hit the reset button and go back to bed. It all takes less than 1 minute so I find it very easy to go right back to sleep.
Jane, since you started this thread, I’m wondering if you ended up with the information you were looking for. Do you feel like you know which type of home dialysis you might be interested in? Have you had any luck finding a home program to help you? I’m wondering how things are going for you.
I am the kind of person who checks things out very thoroughly before I make a decision. I am much closer to deciding whether I want to go with short daily dialysis or nocturnal. I originally thought I would have to relocate in order to get into a program. But, surprisingly, my current nephrologist offered to back me up in a home program after I stressed to him how much I desired the opportunity of a better quality oif life with either short daily or nocturnal dialysis. I have had to do all the legwork as he is unfamiliar with the various machines, the economics, and for whatever reason, does not make it his responsibility to be on top of this issue. It would be nice if I had a doctor and staff who were more learned and supportive re home dialysis, but I am just glad that I will be afforded the opportunity to get in the program that is right for me if I can figure out what that is.
To obtain the info I need, I have made calls to the machine reps and medical overseers of several programs around the country. Speaking directly with the reps and nurse educators, dietitians etc. who manage home programs is enlightening. I was also invited to speak with a nephrolgist of one program. But most of all, it is patients’ direct accounts that provide the subtle insights I need. It is what they articulate to me of what they experience first hand that is helping me form an opinion of what I can live with, and what I can’t, in a home program.
At this point, I have most of the puzzle pieces, but there are still some question marks in my mind. It would be wonderful if I was in a unit that could permit me to try both modalities so I could see for myself which I feel most comfortable with. But I must approach the choice by deciding through others’ experiences what sounds most like what I would want. Once I get through all this, I would like to do something to make it easier for others to get through the process so they will get to the best care in less time.
Jane, I know what you mean about helping others get through this faster. It took me over 1 year to get my dad in a home hemo program. I had to do all the leg work myself. No social worker help. No nephrologist help. No center help. I can’t imagine doing what I did and being a patient too.
Wow, you guys and gals have to be pretty determined down there. Where I live in Canada, I merely asked my nephrologist at dialysis if I could switch to home hemo, and that started the ball rolling. There followed an information meeting with the home dialysis intake nurse, a meeting with the nephrologist who runs the program, a home visit by the nurse and a technician, and then I waited 2 months until my turn came to start training. It wasn’t actually necessary to decide between nocturnal or short daily, because the machine can do either, and everyone starts out on short daily during the 6 week training period. Once that’s completed, they want patients to do short daily for a couple of weeks, and then move to nocturnal Moving to nocturnal is just a matter of scheduling 3 nights sleeping at the hospital, where your training nurse babysits you to make sure everything is working out Ok, and to check blood work during that time (as adjustments are bound to be necessary (like actually adding phosphorus, a different potassium concentration, etc.). But it’s not written in stone. Some people go to nocturnal hemo, but then they decide that they like doing it for a couple of hours a day more. I don’t think I would like the pressure of having to make a definitive decision between short daily and nocturnal before having tried them out.
Pierre do you know if the sensible way things work in Ottawa is an Ontario policy or is it the same across all provinces?