Question index:
Questions received during this symposium have been paraphrased
and the answers submitted by the panelists are presented.

Will PD interfere with tennis with the fluid sloshing in the abdomen?
What's involved in placing a peritoneal catheter?
What's the external visual appearance of a fistula?
What is the cause of post-dialysis fatigue?
Is home hemodialysis as good as in-center hemodialysis?
Is nocturnal home hemodialysis as good as nocturnal cycler PD?
Any good books to recommend on kidney disease and dialysis?
What about the length of time that people can be on different modalities?
Tell me more about home hemodialysis.

Dr. Blake's answers
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Will PD interfere with tennis with the fluid sloshing in the abdomen?
Dr. Blake:
You can play tennis with either type. The fistula doesn't interfere. The PD doesn't interfere. Some years ago I was at a meeting where the tennis professional where the meeting was held was on PD. He came in and demonstrated to us. He was playing tennis at a very high level. So, no. You might think the fluid sloshes around and so on,but I don't think that is realistic. I don't think that actually happens to people. If you are fit enough to play tennis, I think you will be able to play; the PD won't stop your playing.

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What's involved in placing a peritoneal catheter?
Dr. Blake:
The other question, about the operations. Mostly nowadays these things re day surgery. A fistula... you know the way everyone is pushing you out of the hospital. The moment you have anything done, you have to go home. A fistula is put in, and most people go home the same day. They are a bit sore for a day or two afterwards. The PD catheter is also often the same day, sometimes staying overnight in hospital. It depends on whether a general anesthetic is used or a local anesthetic. It is becoming more common to do it with a local anesthetic. It is a bit sore, but if you have a local you can go home the same day. If you have a general anesthetic, you will often be in for a day or two in hospital.

They are both small operations. But it is easy for doctors to say that. No operation is small. You're in kidney failure, you don't want to be having any operation you don't need to have. But they are relatively small operations. With both of them, you can be a bit sore afterwards. The PD--you can be sore for a few days with the PD catheter afterwards. But they are not huge operations. I wouldn't let the operation put a person off if that were the only issue.

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What's the external visual appearance of a fistula?
Dr. Blake:
I really wish I had a picture here to show you. A fistula when it is first made can be very difficult to see. You almost wouldn't notice someone had it. You would see a small incision at the wrist. It is very inconspicuous. But as it develops and as it gets used more and more, it becomes prominent. And if you go to a dialysis unit, you will see people with very large fistulas that you can see from the far side of the room. So it does change with time. Initially it is very little to see. As the years go by, it can get very prominent. Some people find that scary when they see this rather large fistula. It can be a bit unsightly. Again, it comes back to the body image thing. But early on it doesn't tend to be very obvious to see. I should have had pictures. It would have been good to have pictures. Perhaps before we put these talks on the internet, we will have pictures of fistulas, large ones, small ones, grafts, PD catheters, jugular catheters. A picture is worth 1,000 words.

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What is the cause of post-dialysis fatigue?


Dr. Blake:
It is the trauma of having all of the work that the kidney would have taken 48 hours to do all done in 4 hours by a machine. It is very, very acute. The interesting thing is with the newer types of hemodialysis, where you do it everyday, then it is not anything like as bad. If you do this new type that you do all night every night, 8 hours... or 6 or 8 hours, five or six or seven nights a week, they don't notice this at all, they say. It is because it is such an acute therapy. When you do dialysis for four hours three times a week, you are having to force in all the work of cleaning your blood into a very short time. It is particularly removing the fluid that is the most exhausting part. If you have to have 2 or 3 kilos pulled off in four hours, you feel very washed out at the end of it. Some people it doesn't bother them as much as others. It is very variable. But for many people, it is a real issue. Again, they don't tell you about it until you ask them. "What do you do after dialysis?" "I go home to bed" or "I go home and lie on the couch for six or eight hours." Other people are fine. It is less of an issue. That is one of the reasons we are very reluctant to let people drive home after hemodialysis, at least in the early months, until we see what their...how capable they are afterwards. People can be quite weak and faint afterwards. The last thing they want to do is be driving a car until they get used to the idea and know their own capabilities.

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Is home hemodialysis as good as in-center hemodialysis?
Is nocturnal home hemodialysis as good as nocturnal cycler PD?
Dr. Blake:
The home-treatment issue... again, many people have a lack of confidence about this. They say, "I couldn't be as good as all those nurses and doctors. How could I take on this?" But that is really not true. With both types of home treatment, it is possible to do it very well at home. Hemodialysis is more complicated. To learn to do home hemodialysis, you typically need to spend four, six, eight weeks in training; different hospitals do it different ways. But if you are a person who is good with machines, you will be able to do it. I think too few people do it. It is a treatment that has died out. It is a wonderful treatment if you can learn to do it.

Audience member:
But is it as efficient?

Dr. Blake:
Yes. It is the same treatment. You are doing exactly the same thing. You turn up the blood flow to the same, you stay on as many hours. You can stay on longer if you like and make it more efficient. You can also shorten the treatment, and the doctor will never know, of course. That is the other trick you can do with home hemo. And people do evolve their own ways of doing it. We used to have rules like the patients couldn't do it while they were asleep because we were worried that the patients might bleed or something and wouldn't know they were bleeding and so on. But there are patients who do it at home, and there is nothing you can do to stop them. You can threaten to take the machine away, but you can't do that really. We have a lady who has been on it for 20 years who does it while she's asleep, breaks all the rules, but she has never had a problem. I really shouldn't be telling you guys that. The PD one--that is always a home therapy, almost always. So there is not an issue about that.

Speaker:
What about nocturnal HD versus PD?

Dr. Blake:
The best of them all in terms of the most efficient at cleaning your blood is this eight hours every night, six to eight hours every night. The catch, of course, is do you want to be on dialysis six to eight hours every night? It is quite demanding. Some people say, "That is time I wouldn't be doing anything else. I would just be sleeping, and I am going to be sleeping anyway. What's the difference?" Other people would just feel uncomfortable about the idea of doing that. It is amazing again though what people do, what they get used to, and they try it. But at first sight, it is something that a lot of people would feel it is too much time. But when you meet the patients who are doing it, they seem very happy with it. They would not go back they typically say to what they used to do before. So it is very efficient. The cost is that you are spending a whole third of your life attached to a dialysis machine; but it is time that you're asleep anyway.

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Any good books to recommend on kidney disease and dialysis?
Dr. Blake:
The Kidney Foundation produces books. Dr. John Daugirdas writes a wonderful book, but that is directed at doctors and medical residents (Handbook of Dialysis, Lippincott Williams and Wilkins, 2000). But if you are interested and want to read that sort of thing... It depends. Obviously if you get very interested in this, you may feel that the Kidney Foundation's stuff is too simple for you. Most people don't want to know more than that, but some people do. I think nowadays people have a right to know as much as they want about these things. Some people find medical books hard to read as all the terminology and the lingo we talk. There are books written, directed at patients. Maybe you should write one. There is the Internet, of course, and so on.

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What about the length of time that people can be on different modalities?
Dr. Blake:
Perhaps I should have mentioned that. People switch modalities. By far the most common thing to do is to switch from PD to HD because typically after two, three, four, five years, people often have to leave PD. Why would that happen? Typically because they have a couple of episodes of infection, of peritonitis. At that stage they decide, "Oh, I have had enough of this" or they have to switch for medical reasons because the PD doesn't work as well any more. That can happen, typically after anything--two to four to five... it doesn't happen to everybody, but that is a possibility.

It is a bit like transplant. Transplant also isn't forever. PD typically is not forever either. So if you chose to do PD, there is a possibility that one day you will end up doing HD eventually. It depends. You've got to see how things go and make your own decision with your own course. I wouldn't... you might say, "Why bother to do PD at all if one day I am going to be on HD anyway?" I would think that is... you have to take this thing a year at a time, a day at a time even, and go along with it and see what happens. Every person is going to have a different course and decide what matters to you. People occasionally go the other way, from hemodialysis to PD, usually if the fistula keeps clotting and they just can't get a proper access. They then move the other way.

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We were given a video before we decided which modality to choose. It was the peritoneal and the hemodialysis. We have decided to do the hemo because it is the least intrusive on the whole family and on my father's life. The risk of infection and the whole thing about wearing a mask when you are doing the peritoneal dialysis. Never has it come up that there is hemodialysis available in your home. Where can I get more information? How often... how disruptive is it? Is it three times a week? Can we get like a nurse coming in and doing it?
Dr. Blake:
I am going to be in trouble with your doctors, I think. There are issues. You have a right to ask for and look for home hemodialysis. This used to be very common. Some of the hospitals ran it down all together and don't do it anymore. Most hospitals that do dialysis have a few home hemodialysis patients, at least. For example, at our hospital in London, we have about 30 people on home hemodialysis. That is more than maybe many hospitals have. I don't know. What is it in Vancouver? Do you have home hemo? So it is a relatively small number in most hospitals. In some hospitals, the program isn't there at all any more. They just don't do it.

It is a little bit demanding in that you have to have a machine in your own home. So there is a lot of cost up front for the hospital. They've got to pay the full cost of a hemodialysis unit. You don't pay it; they pay it. That is about $30,000, for what it is worth. However, after that they start saving money because they don't pay any nurse to do it. The family are doing it with you. So if it works, it is actually good for the hospital in a business sense. But they will only invite you to do it if they are sure you are capable of doing it. It is much more demanding, say, than doing peritoneal, which is fairly simple. It is like working a computer. You have to be able to work a machine.

It typically takes some weeks to train your spouse or your helper or your friend or whoever will be expected to train with you. There have to be two people able to train at the same time. It is a little bit more demanding. We would not routinely offer it to every patient. And some centers probably don't offer it to any patients. But you have a right to ask about it. I think in Toronto, of all places, these things are available now. You would certainly have a right to ask about it.

Audience member:
So home hemodialysis is still done three times a week, four hours a day?

Dr. Blake:
Yes, three times a week or four. You don't have to do these new types of daily home hemodialysis, which is done two hours every day or whatever. You can do home hemodialysis for the same four hours three times a week.