The dangers of daily dialysis

Discussions for Patients, Family, and Friends HD For Patients
1

Next month I will mark four years on short daily home hemo. I am sure I have more energy but there is a down side. Because I have energy, around about the 24th of last month I gutted my kitchen. I’ve moved walls, added walls and raised the ceiling. I thought I would be finished by now but instead I still have half the drywall to do and still need to start putting in the new floors, not to mention the new cabnets. I am sure if I was doing 3x a week incenter I would still be happily making do with my old kitchen.

Today it’ll be a beautiful day here in Seattle and I’ll be messing with insulation and drywall, instead of swimming in the lake - all because of daily dialysis. :wink:

2

It is interesting to me that some patients are completely satisfied with SDD while others say SND gives more bang for the buck. Might even be that a combination of the two would be a good choice. Seems that with both modalities, patients say they have increased energy.

3

Bill- Thanks for the warning! That kind of energy would be shocking, not only to me but to my closest friends who think my only exercise is on the keyboard… If you’re looking for any side jobs when you finish yours we’re in need of good contractors in Florida. Enjoy the fruits of short daily dialysis, and spread the good word.
Joe Z, Ormond Beach, FL

4

Ah man, you certainly scared me! Thought you meant something else… :shock:

5

I have more energy dialyzing daily than I did dialyzing three times per week in the clinic. I have more energy with my current modality than I did with my first home modality.

But I also know there is a lot of hyperbole on this website as well as folks shilling for daily home hemo and their favorite modalities.

Energy, or the lack thereof, is a complicated subject. ESRD patients are very different and all have a different set of medical conditions. Some patients are very healthy to begin with and have tons of energy on daily HD. Other patients, who have had difficult medical histories, are lucky to get through the day, regardless of HD frequency or modality. The kidneys perform many functions in the human body and every patient is affected by the degree of residual function, if any, remaining in the organs.

Even your location can affect your energy. For example, if you live in Seattle, you may have better service on your HD machine than someone in another part of the country. Therefore, you don’t lose too many days to repairs and may have more energy. If you are considering a home HD machine which requires frequent in-home service, you may want to ask whether the provider has a local service technician.

These personal testimonials are cute, but have limited value. I think it’s best to be realistic about the benefits of daily home hemo. Even the word “daily” is misleading. There are many home patients who only dialyze three to five days per week. Generally, if you don’t do it six days per week, it’s not really considered “daily.” The length of treatment also has an impact, as does age, diet, exercise level, medication regime, and a whole range of other factors.

My nephrologist believes the two major benefits of daily home hemo are (1) you are dialzying at home, and (2) you are dialyzing daily. All other factors can be listed after those two, including modality. Frankly, the No. 1 gift you can give yourself is to be involved in your own healthcare.

I know you may consider this heresy, but there are even some patients who can survive nicely on 3xweek in a clinic. I sat next to quite a few of them before I went home.

6

I know you may consider this heresy, but there are even some patients who can survive nicely on 3xweek in a clinic. I sat next to quite a few of them before I went home

I don’t think this is heresy at all–there are some people who seem to feel very well on in-center hemo. They may enjoy the company of other patients, their treatments may fit with their schedules, and they can do what they want to do. More power to them–we’re all about options here, and if an in-center option works for some people, that’s great.

Because in-center hemo is intermittent, though, I suspect that some of those folks who feel pretty good would feel really good if they got daily treatment (6-7 days/week). I also wonder about the long-term consequences of short, 3x/week treatments, even for people who feel quite well today. And, of course, for many people the schedule and ups-and-downs of in-center dialysis reduce quality of life and compromise the ability to keep a job if the’yre working-age. At the Medical Education Institute, we do think home is better when possible–that’s why we started this site!

7

I have been in-center for a very long time and I to have met very few people that were on dialysis a very long time as well. Their health was much better than mine. Their physical strength was as close as a healhty normal person. However, the difference was that they had their original kidneys still which has some function and I don’t have my kidneys at all…

Believe it or not, but some of those people I knew have now passed away…

I truly agree that if those people chose short-daily or Nocturnal then I think their life span would have increased.

Becauase I have been in-center for a long time I can tell you the results that come with that after many years…

  • Carpal-Tunnel Syndrome (after many years in-center you will get it, espcially if you have no kidney function)… only solution to resolve them severe nerve pain is to have surgery.

  • Bone Disease- This is a common problem, even after 3 years of dialysis, lots a pain when walking. More prevailant in older patients.

Now that I am doing daily I wonder whether some of the problems will or can be reversed and the only way to find out is time. Time will tell whether short-daily can reverse these symptoms. On the contrary, I think if dialyzers are made better for home use then I do think there’s a good reason why patients should switch.

8

I didn’t mean to worry you Gus. I think it is interesting that the people in my life who worried about me self-dialyzing didn’t give it a second thought when I said I would be self-remodeling. I have hurt myself more in the last couple of weeks while remodeling then I ever have while dialyzing. Have you been to a rental agency lately? You can rent all manner of dangerous equipment – power hammers, nail guns, saws of every size and description, even heavy earth moving equipment. I’d say home dialysis is much safer than home remodeling.

And Gus I too hope that daily dialysis will lessen the consequences of long term ESRD. After nearly 15 years on dialysis I have neuropathy in my feet and arthritis in my shoulders and hands but my symptoms seem to have plateaued since going to daily home hemo four years ago.

As far as “shilling for daily home hemo” I take offense to that. The word “shilling” implies a deceitful enterprise or that one is trying to lure a person into a swindle. That is not what this web site is about. There is nothing deceitful about the personal testimonies on this website unless it is the posts by people with hidden agendas and petty grudges. I was on incenter 3x a week dialysis for 11 years, I well know what that feels like. I worked, I traveled, I volunteered but I also threw up at least once a month, I felt dizzy when I stood up and I had to take a combination of blood pressure medications.

The energy I have does not result from living in Seattle. It comes from my daily attention to taking care of myself. I can lift a 12ft sheet of drywall because I have been going to the gym for years. Daily dialysis is one part of a comprehensive healthy lifestyle with ESRD. Dialyzing daily is not the end of the story it is the beginning. Just like every other human: to reach your personal potential you need to eat right and exercise.

I think the personal testimonials on this site have unlimited value. People deserve to know what is possible. By reading the experiences of a wide range of people we can decide for ourselves what the best option is for our situation. As Jane pointed out: people are different. Some people will choose incenter, some will choose short daily, some will choose daily nocturnal and some will choose transplant. In my opinion the most important thing is to be informed of and have access to all of these choices.

9

Do all dialysis patients develop bone disease and carpal tunnel syndrome? After how long? My doctors have never mentioned this to me. Can anyone point me to articles?

10

Hello Jane,
Check this article out…and yes, mostly all patients get it, especially after being on dialysis a long time and those who have no kidney function at all. However, those who have some kidney function may take longer to develop…it has been also said it’s caused by a fully developed fistual…
http://www.aakp.org/AAKP/RenalifeArt/2002/carpaltunnel.htm

Bill@ How the heck can you lift that drywall with arthritis in your shoulders? :roll:

11

Bill writes:
And Gus I too hope that daily dialysis will lessen the consequences of long term ESRD. After nearly 15 years on dialysis I have neuropathy in my feet and arthritis in my shoulders and hands but my symptoms seem to have plateaued since going to daily home hemo four years ago

Do you mean that the damage hasn’t increased , but has just stayed about the same? Do you also have the carpal tunnel syndrome? Is the neuropathy the result of dialysis or diabetes? Lots of people have arthritis despite not having kidney disease. I have not seen much info on these issues as they aren’t mentioned in depth by my doctor or staff and probably most patients who have lived long enough on dialysis and have it don’t get on the net. I have read lately where a number of patients on regular in-center dialysis say they feel stiff and sore, off and on, and are wondering what the cause is. It could be as simple as worrying too much about dialysis and not getting enough exercise or could be dialysis related. I too would like the facts on this subject. Can anyone sum up the literature?

12

It is the day after that my shoulders hurt the most. Last night I had trouble sleeping because both my shoulders hurt - I couldn’t find a comfortable position to sleep. I don’t think it is the lifting so much as the repetitive mudding process - especially the overhead work - that trashed my shoulders. I’m taking a break from drywalling this morning to catch up on work at the office – as the morning has progressed my hands and shoulders are loosening up – I think I just need to take it a bit slower. I was suppose to start the floor tomorrow but I am pushing that back to the end of the month to give me time to finish the walls without wearing myself out.

13

Hi y’all,

Jane wrote

Do all dialysis patients develop bone disease and carpal tunnel syndrome? After how long? My doctors have never mentioned this to me. Can anyone point me to articles?

Bone disease and carpal tunnel syndrome can be long-term problems for people on dialysis. If they do occur (and I don’t believe there are data to suggest that they happen to everyone, although they are very common), it tends to happen after a number of years (10? 15? 20 or more?).

Carpal tunnel syndrome in dialysis is most likely related to deposits of beta 2 amyloid (B2m). This protein is removed much better by nocturnal home hemo (and somewhat better by daily, I suspect) than by in-center hemo.

Bone disease in people on dialysis is most often due to a cascade of events that is triggered when the kidneys fail. The kidneys make an active form of vitamin D. The body needs this active form (called calcitriol) to be able to absorb calcium from food. Failed kidneys don’t make enough calcitriol. To maintain blood calcium levels, the parathyroid glands in the neck put out parathyroid hormone (PTH) to trigger calcium to be released into the blood from the bones. Over time, this makes bones weak and fragile.

Also, failing kidneys don’t remove enough phosphorus. Phosphorus combines with calcium in the bloodstream to form painful crystals that can deposit anywhere in the body, or very rarely, can even cut off circulation to a limb, leading to gangrene. Phosphate binders are taken by most people on in-center hemo to sop up the extra phosphorus and prevent this rare complication (called extraskeletal calcification).

It took many years for nephrologists to work all this out and figure out what to do about it. Patients who start on dialysis today–even in-center hemo–now have access to state-of-the-art treatments to prevent bone disease. These include:
– Replacement of calcitriol (Zemplar, Hectorol)
– Non-calcium based phosphate binders (e.g., Renagel)
– Amgen’s new Sensipar, a first-in-class drug that makes the parathyroid glands more sensitive to calcium in the blood

People who do daily or nocturnal dialysis today may benefit even further:
– Patients on nocturnal home hemo often don’t need to take any phosphate binders, because their treatment removes enough phosphorus. (This is true to a lesser extent of daily, too)
– Some research has reported that calcium-phosphate crystals have melted away over time in people on nocturnal home hemo
– More dialysis removes more B2m, for less of a future risk of amyloidosis

I can’t refer you to any articles, but the final module of Kidney School is on long-term complications, and we hope to complete it this year.

14

Try doing a PubMed or Google Scholar search with “C-reactive protein” plus “dialysis” and/or “arthritis” and/or ”amyloid”. There are a lot of results – I’m still looking through them all but a lot of the results are brief summaries – it sure would be nice to get more complete and recent articles and papers.

I think that inflammation plays a critical role in this but there is a need for more research. I do think my symptoms have stayed the same since starting daily home hemo after 11 years on 3x a week incenter hemo. I’m not sure if Gus and I have different conditions or if we are using different words to describe the same problem. To me what I experience feels like what other people call arthritis. I don’t have diabetes so I have to believe that my neuropathy is a result of having ESRD for 17 years (it was 17 years ago this week that I received a kidney from my brother).

From what I have heard and read inflammation is the common thread connecting neuropathy, joint pain and amyloid deposits in long term dialysis patients. Minimizing inflammation is a key part of my strategy for long term health with ESRD.

I think you touched on something when you wrote “It could be as simple as worrying too much about dialysis and not getting enough exercise or could be dialysis related. “ It can be very hard to sort out what is going on when you are on dialysis. I’m sure we all know people without kidney disease who have low energy or who wake up stiff and/or sore. Often exercise helps but it can be very hard to go to the gym when you feel stiff or tired. For me the key is to try. If I listened to my inner voice when I first woke up or after work, before heading to the gym, I’d accomplish much less. Most days I just keep moving and the joints start to loosen up but I don’t know how you could tell what is possible unless you challenge yourself to try.

Dori – I thought that there was research to suggest that more frequent/longer dialysis could remove b2 amyloid but that ultra pure dialysate and biocompatible surfaces reduce the production of amyloid. I couldn’t find a citation in my brief search but I thought I saw it cited before.

15

To expand a little on Dori’s post:

B2m is an end product of compliment activation, and ESRD patient have higher levels even before starting on dialysis. The old non-biocompatible membranes caused even higher levels, and could not remove it. High flux dialyzers cause less compliment activation, and can remove nore of it, but I have not seen any recent studies that show that dialysis patients suffer less from carpal tunnel than they did 10 years ago.

Regarding bone disease and phosphorus, it is also important to understand the effect on soft tissue, such as cardiac and blood vessels. The following is cut and pasted from an article I wrote in the Feb 2004 issue of Dialysis and Trasnplantation Magazine.

[i]To prevent bone disease and calcification of cardiac muscles, it is
important for dialysis patients to maintain the correct levels of calcium
and phosphorus in their blood. While healthy kidneys remove
excess calcium and phosphorus, it is difficult to remove phosphorus
through in-center or daily short dialysis because of its large molecular
composition. If the phosphorus level in the blood gets too high, it
causes calcium to precipitate out of the blood and be deposited in soft
tissue, such as blood vessels and heart tissue. When the blood calcium
level drops because of this precipitation, the parathyroid gland is
stimulated, causing the body to draw calcium from the bones to
replace the calcium lost from the blood. This can result in a neverending
cycle of removing the calcium from the bones, where it is
needed, and depositing it into tissue, where it is harmful.

In-center dialysis is ineffective at removing phosphorus. Using standard
dialysis to remove phosphorus is “akin to robbing a panhandler
outside of a bank rather than the bank itself.” Phosphorus is held
mostly within the cells of the body, and it takes longer than a normal
dialysis treatment to bring it into the vascular system where it can be
dialyzed. Nightly nocturnal dialysis, on the other hand, is so effective at
removing phosphorus that patients on this therapy are able to consume
much more phosphorus while requiring little to no phosphate binding
medication (Figure 2).

The calcium x phosphorus product is also reduced in patients
on nightly nocturnal dialysis (Figure 3). In fact, nightly nocturnal
dialysis often requires a higher calcium level in the dialysate,
of up to 3.5 mEq/L, and often the addition of phosphate to maintain
an appropriate calcium-phosphorus balance.[/i]

Here are the articles I cited in this section:

DeSoi CA, Umans JG. Does the dialysis prescription influence phosphate removal? Semin Dial 1995; 8(4):201-203.

Lindsay RM, Alhejaili F, Nesrallah G, Leitch R, Clement L, Heidenheim AP,
Kortas C. Calcium and phosphate balance with quotidian dialysis. Am J Kid
Dis 2003; 42(1, Suppl 1):S24-S29

Lockridge RS, Anderson HK, Coffey LT, Craft VW, Jennings FM, McPhatter II, Spencer MO, Swafford AC. Nightly home hemodialysis in Lynchburg, Virginia: Economic and logistic considerations. Semin Dial 1999; 12(6):440-447.

Pierratos A. Nocturnal home haemodialysis: An update on a 5-year experience. Nephrol Dial Transplant 1999; 14:2835-2840.

There is a test I have heard about at conferences called the Electron Beam Computed Tomography (EBCT) that can measure calcium deposits in soft tissue. Those studies have show that there are significant deposits in most dialysis patients within one year of starting dialysis. I have not seen any studies on patients undergoing daily dialysis.

Curt

16

I’ve just found that by including “eneph” in my Google searches I get a better search result as far as complete articles v. PubMed summaries. Here are some links to articles I’ve just came across - some are more relevant than others:

http://www.eneph.com/pdf/v29n10p614.pdf
Interesting article points up the connection between nutrition and inflammation.

http://www.eneph.com/pdf/v33n8p486.pdf
Article looks at hip joint problems in long-term dialysis patients

http://www.eneph.com/pdf/v33n2p92.pdf
Article is a survey of chronic pain in dialysis patients

http://www.eneph.com/pdf/v31n12p845.pdf
Article references a “global debility” linked to malnutrition/inflammation and hematocrit levels as a predictor.

17

Because we’re both on dialysis most likely the symptoms are the same…

Arthritis or inflamation on me is affected more with weather changes, but still resides at a minimal level…

Bone pain comes on off and is varies for me. Sometimes it’s bad and sometimes it’s not.

As for carpal-tunnel…well, mine is pretty bad. I can’t make fists with my hands anymore, can’t tie my shoe-laces either. :cry: …I already had carpal release surgery on my left wrist and it worked…pain is all gone but the damage is already done…

Am sure some of you heard the saying “Spiders crawling all over your body”…if you never heard of that then it’s a hint that your nearing your last days of life on dialysis…a slow killer just crawling its way up…

So ya, long term dialysis is no good, but now we don’t know whether daily dialysis will save the day… :? I guess the truth about this will come very soon… :roll:

18

This might just be a coincidence, but for the past year, on 3-times per week hemo until I switched to daily, I was finding that the morning after an evening dialysis treatment (in-centre), I would have pain and a certain weakness in my wrists and up to my elbows when I typed on the computer, answering email and what-not. The discussion above made me realize that this pain has totally disappeared, for now anyway. I don’t know for sure if it’s related to longer more frequent dialysis, but the improvement sure does coincide with it.

I don’t know that daily hemo will prolong life. The way I look at it, I have esrd and I have no choice in the matter. So, I live in the here and now… and all I know is that daily hemo greatly improves my quality of life, real world, every day. It’s not perfect, and it’s not a panacea, but it does seem to be much better, if only because I can eat and drink now without having to worry about it. I’ve been able to eliminate my blood pressure medication so far, but on the other hand, I’ve had to start on calcitriol, so as for total medications go, I’m even. Just like Dr. Pierratos’ article about nocturnal, I’m now adding both calcium and phosphorus to my dialysate every night. That’s quite a reversal from taking TUMS with every meal and minimizing phosphorus in my diet.

The downside of it, especially if you’re doing it without a helper, is that it takes some pretty heavy motivation and a lot of work to do this 6 nights per week. By the end of the evening, I would rather just fall into bed rather than spend an hour or more setting up a treatment. But, you do what you have to do.

Pierre

19

Curt is “Compliment activatioin” the cause or techniocal name for chronic inflammation? or something else all together?

20

Compliment activation is not the same, but it is one of the causes of chronic inflammation.

When blood is exposed to a foreign substance, such as a dialyzer membrane, the compliment system is activated creating what is sometimes described as the “compliment cascade”, because each response in the blood creates a couple of additional responses and on a flow chart one event at the top has led to many responses at the bottom. One of these responses is clotting. I cannot describe this in great detail because it is beyond my understanding. I will try to explain this as best as I can.

When blood hits the membrane, this compliment cascade begins. As markers for biocompatibility, researchers use a small protein called C3a and white blood cells. C3a levels in the blood increase rapidly, and WBC’s decrease rapidly (the WBC’s are clustering together in the lungs preparing for coordinated attack). Another small protein called C3b is also released and this starts sticking to the dialyzer membrane, coating it and isolating the membrane from the blood (often called the “secondary membrane”). When enough C3b is on the membrane, the compliment activation stops and C3a levels decrease while WBC’s increase as they redistribute themselves.

The smaller the increase of C3a, and the smaller the decrease in WBC’s the more biocompatible a dialyzer membrane is. With the old dialyzers, it took about 15-20 minutes for the secondary membrane to form, while the newer membranes can accomplish it in about 90 seconds. Oddly enough this is because the new membrane reaction is stronger than the old membranes, but because they form the secondary membrane faster the net effect is that they reduce compliment activation.

Chronic inflammation is the result of the body being in a frequent or constant state of defense: reacting to membranes, higher levels of waste products, exposure to endotoxin in dialysate, small exposure to bacteria through a needle stick, recovering from too many surgeries, etc. Eventually, all of these “insults” leave the body’s defense system weakened, and it cannot respond as well.

Reducing the insults is important to reducing chronic inflamation. Use good water, clean your arm well before you stick, use a fistula instead of a graft or catheter (if it is possible for you). The out come of the studies on daily dialysis would make me think that the benefits of it far outweigh the more frequent exposure to dialyzer membranes, but using biocompatible membranes would be important.

Curt