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Anonymous
June 11, 2005, 01:42 PM
Since there is no longer a RN present to do pre and post assessments when one goes into a home program, how do assessments differ from in-center?

Pierre
June 11, 2005, 05:25 PM
I do the same thing as in-centre: check BP sitting and standing, temperature, weight. I have to keep a log of these, although, to be honest, nobody has ever asked to see them.

Anonymous
June 11, 2005, 08:31 PM
I have to do BP, Temp, weight and tell them how much I am taking off of hubby Ralph. I then call into our center so they can add it to their records. They watch us all night via internet. In the am I do the same thing, telling them BP's, BVP, Fluid removed, temp and weight.
Pat

Anonymous
June 12, 2005, 12:12 AM
I have to chart b/p standing and sitting, temp, weight and pulse both pre and post as well as during treatment (pulse, b/p, pressures, fluid removed etc). I also have to daily chart my heparin load, blood flow rates, u/f rates, etc., these I turn in each month at my appointment and email them with my billing info at the end of the month.

Interesting how we all report differently.

I think if you ever do home dialysis you will soon understand that you end up knowing your body real well and have the freedom to change u/f rates, adjust dry weight, etc.

Pierre
June 12, 2005, 08:49 AM
As I said before, I keep daily logs for pre-treatment and post-treatment, as well as during treatment. Every half hour, when the machine takes my BP, I log that plus heparin remaining in the heparin syringe, arterial and venous pressures, TMP, UF rate, blood flow, dialysate flow, conductivity and dialysate temperature. There is no internet monitoring, and nobody asks to see the logs on a regular basis, but I guess they could refer to them if I had any problems or an emergency. I bring them along to my monthly clinic appointment. I personally find them useful to have a history of my dry weight and BP. I can vary my dry weight on my own to some extent, also blood flow. I find I feel better starting with a lower blood flow, say 325, for a while, and then I up it to 400. I check and log the total volume of blood that has gone through after treatment.

Anonymous
June 12, 2005, 12:59 PM
I no longer do a lot of logging during treatment, usually only once, as everything goes pretty smoothly these days. I don't use the b/p on the machine as it makes so many mistakes and constantly takes 2-3 checks to give me my b/p and I have a very sensitive arm, so I use my own cuff.

I don't have anyone monitoring my treatments either, but I do have a nurse I can call 24/7 if there are any problems, I've only had to call a couple of times with minor machine problems.

I agree that having the records would be good, but luckily I have a pretty good memory and there really hasn't been much flucuation.

Anonymous
June 12, 2005, 01:40 PM
Pierre writes:
I do the same thing as in-centre: check BP sitting and standing, temperature, weight. I have to keep a log of these, although, to be honest, nobody has ever asked to see them.

Someone is not doing their job. In-center, I find corners are cut on assessment, too. This is considered a violation of regulations.

Pierre
June 12, 2005, 01:46 PM
Funny you should mention the BP being taken twice. My machine was doing that too. almost since the day I got it home. I found it very annoying (and useless really, since on the second inflation, the BP reading is bound to be wrong anyway from the arm being engorged with blood) -- but not enough to complain about it, since I was used to the machines at the dialysis centre doing that too. On Friday, it finally gave up the ghost somehow. It kept reinflating each time until it gave me an error saying the BP cuff could not deflate (paraphrasing here, as I don't remember the exact wording of the alarm message). I used my own BP machine during that treatment, but I gave them a call and a tech came Saturday morning to replace the BP module in the machine with a new one. It's a very quick and easy replacement. The new module worked fine, but it's only been one treatment since then (yesterday).

Generally, I find BP measurement in the dialysis world almost laughable - not even close to being in conformity with the proper way of measuring blood pressure, and almost guaranteed to result in inaccurate measurements (usually higher readings).

Pierre

Anonymous
June 12, 2005, 02:38 PM
Cathy writes:
I have to chart b/p standing and sitting, temp, weight and pulse both pre and post as well as during treatment (pulse, b/p, pressures, fluid removed etc). I also have to daily chart my heparin load, blood flow rates, u/f rates, etc., these I turn in each month at my appointment and email them with my billing info at the end of the month.

>>What is the point of assessment info if your doctor/team is only looking at it once a month? My understanding, and the way I use, is assessment is to prepare me for the current tx and each successive tx. Much can, and does change from one tx to the next, let alone in a month.

Cathy writes:

I think if you ever do home dialysis you will soon understand that you end up knowing your body real well and have the freedom to change u/f rates, adjust dry weight, etc.

>>I have assessed dw and goal for years in-center with doctors' blessings.

Pierre
June 12, 2005, 03:09 PM
Jane,

Home hemodialysis patients and/or their helpers are more in charge of their treatment. Not that everyone who dialyzes in-centre is passive about it (I certainly wasn't), but, when you do your own hemodialysis, by interest and training, you are better equipped to understand what is going on and when it's necessary to call the nurse. A nurse is always just a phone call away, 24 hours/7 days. If the post-treatment info shows anything unusual, like an unusually high or low BP, a high temperature, a post-treatment weight that is out of whack with the UF goal that was programmed, we know enough to call. We probably end up following ourselves a lot more attentively than what the staff in dialysis centres do, since we are our one and only patient.

It's no different than PD patients doing their own dialysis. They only go to clinic once a month too, and in between, they call if there's a problem.

Overall, I would say I get more "interested" attention as a home hemodialysis patient now than I did when I was dialyzing in-centre. I think this is because the nephrologist and nurses who run the program take a special interest in it succeeding.

Anonymous
June 12, 2005, 03:21 PM
Cathy writes:
I no longer do a lot of logging during treatment, usually only once, as everything goes pretty smoothly these days.

>>Do you mean that your unit does not require you to do logging?

Cathy writes:
I don't use the b/p on the machine as it makes so many mistakes and constantly takes 2-3 checks to give me my b/p and I have a very sensitive arm, so I use my own cuff.

>> I also do not find the bp apparatus of the machine to be accurate. The cuff loosens up and then the bps read too high. Have you found a cuff that works well? I would like to purchase one that is easy to use and reliable.

Cathy writes:
I agree that having the records would be good, but luckily I have a pretty good memory and there really hasn't been much flucuation.


>> This is something that I would not like to leave to memory. I like having a complete record so I can refer back to it, if need be, in black and white.

Anonymous
June 12, 2005, 03:39 PM
Pierre writes:
Generally, I find BP measurement in the dialysis world almost laughable - not even close to being in conformity with the proper way of measuring blood pressure, and almost guaranteed to result in inaccurate measurements (usually higher readings). s:

>>It seems that the machine blood pressure device in-center is just for staff conveinience to comply with govt. regs. and not in the best interest of patients. Hard to believe something as important as bp measurement is not efficient and CMS overlooks.

Anonymous
June 12, 2005, 03:51 PM
Jane, if you read my earlier post I said I DO keep records of every treatment, what I don't do is take a lot of readings and loggings during every treatment, usually just once, unless something is unusual. (Pierre had noted he logs every half hour, I was simply saying I log during the first 30-60 minutes and then not again unless something is amiss) In the beginning I did log more often but since everything is stable I find it unmeaningful and my center agrees, my b/p and pressures remain stable so the only difference is amount removed and I log total amount so it too doesn't really matter.

With regard to b/p cuffs, the Omron is generally considered to be the best, that is the one I use.

I do have a monthly summary with b/ps, pulse rates, temps, weights etc., but do not copy the daily reports I turn into my center as my pressures remain pretty stable and nothing else other than daily u/f rates really vary by much.

Jane, you will find that you will learn a lot more, like following pressures, being able to "feel" if your b/p, temp etc. are off, you just become much more aware of everything. You will only find this out if you actually do home hemo, I'm not sure you are really looking or simply being a devil's advocate on this board.

With regard to the point of assessment, it is so WE know what is going on and WE know when to contact our center because something is amiss. The center reviews these reports to ascertain that we are doing a good job in analysis and reporting anything to them that we should be reporting. You are NOT correct that much changes, actually the only change from day to day is fluid removal. If something changes then it IS to be immediately reported, remember when we are doing home hemo we become the tech and nurse and have the responsibility of knowing what we are doing.

Pierre
June 12, 2005, 04:03 PM
Well, to be fare, during dialysis, they are mostly taking regular readings of BP to ensure the patient's BP isn't falling too low. They don't need an absolutely accurate reading for that.

Automated BP machines really should never be used to make treatment decisions, ie. prescribe medication. The only reliable instrument for that is a properly-calibrated sphygmanometer - in other words, a manual BP measurement device used by a person with adequate hearing and trained/certified in how to properly measure blood pressure.

Unfortunately, for patients who are on dialysis, there is a tendency to rely only on the automated device all the time just because it's there. As far as making treatment decisions regarding BP, measuring BP at dialysis isn't exactly the most accurate setting. I mean, you're not really at rest, the arm may not be at heart level, you've had maybe 2-3 litres of fluid removed from you in a short period, etc., plus, I don't really have confidence in the calibration of those machines. They see such heavy use, for one thing, and the cuff may be too small or too big for the patient (nobody checks this, but this will affect the measurement).

Personally, I've always felt that the nurses should periodically check the BP using a manual cuff, and they certainly should do it manually during the monthly clinic appointment - but most of the time, they use a machine for that too. Same thing at pre-dialysis clinic appointments. To compound the problem, everything we know about BP from research over the past century involves otherwise healthy people. We don't really know what the optimal BP is for dialysis patients. There is some sketchy evidence that what is optimal for "normal" people may be too low for hemodialysis patients. They are really just guessing.

Anonymous
June 12, 2005, 08:36 PM
Cathy writes:
Jane, if you read my earlier post I said I DO keep records of every treatment, what I don't do is take a lot of readings and loggings during every treatment, usually just once, unless something is unusual. (Pierre had noted he logs every half hour, I was simply saying I log during the first 30-60 minutes and then not again unless something is amiss) In the beginning I did log more often but since everything is stable I find it unmeaningful and my center agrees, my b/p and pressures remain stable so the only difference is amount removed and I log total amount so it too doesn't really matter...I do have a monthly summary with b/ps, pulse rates, temps, weights etc., but do not copy the daily reports I turn into my center as my pressures remain pretty stable and nothing else other than daily u/f rates really vary by much.

>> It is interesting that you are not required to log every 30 minutes as is done in in-center units. Can anyone confirm if logging every 30 min. is a govt. regulation or just unit protocol?

I watch all the data on my machine and go back over it later via my run sheets. I've made a practice of doing this to review the tx as in-center there are more errors than one carefully doing one's own tx in a home program would have. We've already addressed inaccurate blood pressures. Yes, I can feel when my bp is doing something, but often I can't accurately confirm what it's doing as the bp readings are off. This is an example of how patients are prevented from knowing accurately what their body is doing. Everytime it occurs to me how to get a more accurate idea of the tx., I take a step up. So, in this instance it will mean getting my own bp device.

The same thing applys to HR (I kept having an ending pulse of as much as 140 something at one time. With different conditions, my pulse came into normal range. Never got an answer as to why this was happening to me. My sheet held the record, however, so I could refer to it to see what was going on and how to correct. BFR can easily be set wrong by a tech who is in a rush ( my body quickly tells me if the BFR is set too high and later I learned to watch this setting as well as all the others). Early on I had high neg. art. pressures. This was before I knew what a high art neg pressure meant. So, again, the run sheet has been an assessment tool for me. The run sheet reveals the entire tx. Was the goal set properly? 1.3 or 3.1 removed due to tech error? And in-center the machines frequently come out of calibration, so it is good to have the run sheet from which to review. These are just a few examples-there are more.

For some there is less fluctuation from tx to tx. For others, just a small difference in weight gain or loss can make a big difference.

Cathy writes:
Jane, you will find that you will learn a lot more, like following pressures, being able to "feel" if your b/p, temp etc. are off, you just become much more aware of everything. You will only find this out if you actually do home hemo, I'm not sure you are really looking or simply being a devil's advocate on this board.

>>These things are not learned only through being in home hemo. One can be just as aware in-center. It depends on how well one is educated on the tx. Personally, I have no interest in playing devil's advocate. I am for accurate dialysis education and would love to see professionals take a greater role in contributing to this board.

..

Anonymous
June 12, 2005, 09:27 PM
Jane my point is in MY treatments my arterial and venous pressures vary only by about 10 points no more no less, so charting is meaningless. My u/f rate stays the same throughout the treatment unless I change it, and I set it originally so a mistake won't happen and charting wouldn't help, I would certainly notice on the first charting. My b/p is stable and I do check it more frequently, just don't chart it unless it isn't "usual", something my clinic should see (which hasn't happened since my first week on dialysis during training).

I don't vary dialysate flow or b/f nor do I change my heparin amounts, so it is unnecessary to constantly recheck these things.

I've never been in a unit but would guess I would prefer to have it checked more often, although I think I would know what the settings should be and I would verify that they are correct. Since I am the only one using my machine it should be correct for some things like sodium and bath prescription, something a center must change for each patient.

You seem so negative about home dialysis units and I have found them to be wonderful, extremely responsible and caring, know me and my treatment extremely well, very responsive if I need any assistance and probably more knowledgeable than most dialysis units since most if not all are r/ns with many years of experience, we don't deal with techs (except for machine maintenance and repairs). I see a dietician and social worker each month, and I have blood work as needed, monthly or as often as every few days if I have changed my bath or have an abnormal result.

Pierre
June 12, 2005, 10:14 PM
I'm really not sure what Jane can get from "professionals" on here that informed home hemodialysis patients can't provide in terms of how hemodialysis is done at home. These are not really questions that professionals are needed to answer. I've always found that patients like me learn more from other patients than from anyone else.

Anonymous
June 12, 2005, 11:24 PM
Cathy, I see your points exactly and am saying the same thing- that it's not as necessary to be as vigilant about checking everything so over carefully in a home program, because home patients set up their own txs and are not affected by nurses and techs who may be prone to errors because they are rushing to put numerous patients on. It's a much different story in-center, so the run sheet is a good record to have.

I'm not negative at all about home programs. You must of read something into my internet words that I did not say. I'm all for home programs! I agree that the home program nurses I have spoken to sound like good nurse educators and were very enthusiastic.

I am not sold yet on a particular machine or home program as I don't have all the info I need yet to proceed. I see where some have had problems with alarms or with service and others are not clear on which modality is best for them. So, I'm just waiting until the picture comes in a little clearer since I don't have a unit where I can try each of the modalities to see which one I like best. I have to choose a machine without getting to try it out first. This will be a new program for my area. We do not have experienced home training nurses here. So, I am still in the looking things over stage. That is why I would appreciate hearing from more professionals as to their insights on home programs.

Anonymous
June 12, 2005, 11:52 PM
Pierre writes:
I'm really not sure what Jane can get from "professionals" on here that informed home hemodialysis patients can't provide in terms of how hemodialysis is done at home. These are not really questions that professionals are needed to answer. I've always found that patients like me learn more from other patients than from anyone else.

>> My belief is that no one knows it all. I have gotten my dialysis education from many people, both educated patients ( like you Pierre and Cathy) and professionals. Many professionals I have encountered know less than educated patients. So, I am not referring to them when I say professionals. I am referring to the professionals who really do know dialysis, stay current in their knowledge, are good educators or are involved in the invention of the various machines that are on the market for home hemo. There are angles that only patients know so I really listen intently to that, but there is knowledge that some professionals have that patients do not.

Pierre
June 13, 2005, 09:49 AM
Hi Jane.

You originally asked what kind of assessments are done pre and post treatment. I think that question was amply answered early on in this thread. I don't know what more could be said about it by anybody, lay or pro. It's a normal part of nursing to do a "round" at specific intervals. In dialysis, as you know, they do it about every 30 minutes, and this information is logged. At the dialysis unit I used to go to, the log was actually electronic, that is, BP, etc. is automatically logged by the computer, but a nurse would come around and input his/her information into the system as well. At home, I do the same thing, but it's not computerized. There's not much more to it. I was trained to recognize the symptoms of various things that are relevant to hemodialysis, especially low blood pressure, infection, air embolism and hemolysis. If I get any symptoms, I know enough to take some kind of action. For example, if I start yawning, I'll check my blood pressure. If it checks out Ok, I repeat the check after a short while. If my systolic under 110, I automatically know to infuse 200ml of saline, and check again. Before treatment, I check my BP and my temperature. If I have any sign of high temperature, I'm supposed to phone the nurse before starting treatment. So, it's pretty simple. Most of us do the exact same kind of pre and post assessment they do in dialysis centres, and because we do it ourselves, we are probably more careful about it. Any more ominous symptoms like chest pain would prompt me to call 9-1-1 - simple as that. You don't take chances with those kinds of things, since as a patient, we can't really self assess chest pain.

"Assessment" sounds like a big, important word, but it just means doing the things we are already doing. We do this way more frequently than the staff at most dialysis centres, even though we may not be logging it each time.

This is all stuff you would learn during your training if you decided to go for home hemodialysis, and you would only do so if you are a relatively stable patient. As for choice of machines, well, I've already given my opinion about that in other threads at various times. It's a machine, and it does dialysis. The machine is just a bunch of pumps and sensors. The main thing is that about a cup of blood is out of the body in a sterile blood circuit, and it goes through a dialyzer. All dialysis machines basically do the same thing. I don't see how it matters that much which make it is, except for convenience issues and for reliability. Usually, the greater the convenience, the lesser the reliability, simply because the greater convenience must be achieved by having more automatic things on the machine that can go wrong. It's like agonizing over which computer to buy. If you're always waiting for the next model that will appear in a month, you will be waiting forever. Just do it.

Problems with the machines seem to come in clusters. I had no problems at all for almost 2 months. This past Thursday evening, my R/O (the water purification unit) broke down and I had to skip that treatment. The technicians, local employees of the hospital which operates all the major dialysis units in this city, were at my home with a replacement R/O by 9 the next morning, and I did my treatment normally later that day. During that treatment, the machine refused to take a blood pressure reading. It just kept reinflating and reinflating until it gave an alarm. I simply used my own BP machine for the rest of that treatment, but the boys from the hospital were at my place Saturday morning to replace the blood pressure module in the machine. Why were they able to fix it the very next morning, and on a Saturday at that? Simply because they are the same team of techs that service the machines at the four hospital dialysis units, two of which run 24 hours a day, 7 days a week, plus the 4 satellite units in the hinterland and all the home machines within the region. They have all the parts because my machine is identical to the machines there, and they have to be able to keep something like 200 of those machines running on a daily basis.

Based on my experience so far, I would say that easy serviceability and local-based service are the most important things to have. Other than that, as long as the machine does dialysis, I'm happy. Now, if that kind of local service were not available to me, I would still want to do daily home hemo, but I would want to be assured of reasonably quick service. From reading about other patients, it does seem like they all get pretty good service. I think this is because every organization involved in home hemodialysis is interested in making it look as good as possible.

This is just me, but I like the fact that I use the same machine as they do at the dialysis centres in my city, because anytime I end up having to dialyze there for whatever reason (this does happen), I already know how everything works and I can keep an eye on things. It's just very empowering.

Anonymous
June 14, 2005, 11:48 PM
Pierre,
My original post had to do with which assessments home patients perform. I believe that has been answered. When I said I would like to see involvement from more home patients and professionals on this board, it is in regard to the whole spectrum of info on home dialysis. I would like to have more info. on which to base my decision to choose a home program/machine than around 7-10 patients half of which have only posted sporadically.

As you said, service is key. There is no service in my area yet as there is no home program yet. I have to be sure that the company/machine I select provides good service. That is what I am working on now. And, with the info. I've read so far, it is not clear to me whether I would prefer short daily or nocturnal txs, so I'm waiting for more input here as well.

If I knew that short daily was sufficient for my needs, I would get started on it now with the NxStage. I've heard lots of good things about this machine/company. But until I rule out if I want nocturnal txs, I can not go with NxStage.

It seems that there are a few locations in the U.S. that approach home programs the way your system does there in Canada, starting patients out on short daily and then training them in nocturnal, providing them the opportunity to decide which modality they prefer. But most programs here are either/ or. And although I have established that short daily with NxStage is economically fesible, I don't yet know if nocturnal would be covered in my area for one patient.

So, I have been granted the opportunity to choose one or the other and I feel I need more info. on service, patients' experiences with the modalites, professionals input in order to make my final decision. I do not want to have the problems that some have stated regarding machine alarms in the middle of the night, backed up water system and I especially want to be assured of a back up tx in-center should my home machine require service.

Pierre
June 15, 2005, 08:08 AM
Good luck with your choices, Jane. I respect you being a careful consumer about this. I suspect that no matter what I or anyone else says, pro or layman, at some point, you're just going to have to take the leap and do it, and see how it goes. No matter how well you've planned it and thought about it, things can and sometimes will go wrong. Like the choice between PD and hemo, there are things you just can't predict, and, it's not an irrevocable choice. You can always switch or go back. Keep in mind that the "pros" aren't on dialysis themselves. I don't care what anyone says, there's a world of difference between providing dialysis and renal care and actually being the recipient of it!

I'll be switching from short daily to nocturnal next week. I'll be able to give you my observations after I've done it for a while. One thing I can tell you already though, is that, while it's certainly better than 3/week hemo, short daily is fairly intrusive on daily life. It's relentless - always a significant part of each day every week except one, and it takes a lot of motivation sometimes to actually do it.

I personally feel that because it's done at night, which is downtime anyway unless you're a real night owl, and because it's longer, with all the dietary advantages that brings, nocturnal is more worth the effort than short daily is. I think a person like me, with some residual kidney function and, hopefully, getting closer and closer to a waiting list kidney transplant, might reasonably decide that 3 times per week is good enough compared to short daily hemo. Nocturnal is more worth it because of the fact that it pretty much eliminates the diet. Short daily runs at the same flows that you do in centre, and so it takes the same level of vigilance during treatment. If you're doing it alone, you really have to stay awake and alert. At in-centre dialysis, my treatments were 3-1/2 hours, and I used to be happy if I managed to fall asleep. At home, you can't really sleep through short daily if you don't have a partner watching over you. For one thing, at the very least, you have to do a round every 30 minutes, and, in the meantime, there are bound to be some venous and/or arterial pressure alarms, TMP alarms, etc. You have to respond to these fairly quickly.

Either short daily or daily nocturnal, this is a LOT more responsibility than just showing up at the dialysis centre every other day. Aside from the dialysis itself, there's having to think about the supplies. It does take some management. I get mine once a month, due to lack of storage space where I live, but some people get them for two months at a time. But either way, it's not as simple as one might think, and you have to make sure you don't run out of anything. You go through some consumables a lot faster than others, and you have to be sure you don't mis-count things. Also, all the different test strips (I have three, one for peroxide, one for chlorine, and one for chloramine) have expiry dates on them, but, you tend to run out of useable "after opening" time with them before you actually run out of the strips themselves. So, you have to check that periodically. You also have to rotate your supplies as fresh ones come in. Even the saline has an expiry date. Not a big deal, but it is one more thing you have to keep track of.

So far, doing short daily since March, I've only had to miss one treatment, the evening my R/O stopped working. Other than that, I haven't missed a beat, but I have made a few clamping/unclamping mistakes which necessitated starting the setup all over. I can't think of too many things that could go wrong with the actual water supply though, except maybe a hose somehow accidentally becoming disconnected (although they seem pretty secure in my installation - touch wood!). What could go wrong fairly easily though is the drainage. Once that machine is installed in your home, you're really on your own as far as plumbing goes, and as we all know, household drains are prone to blocking. Any resistance in the drain will definitely affect your dialysis. For example, if you live in a place, like I used to, where tree roots regularly blocked the main drain from the house and rotorooter had to come in, it could be a miserable problem. I've only had one water leak since I started short daily, and that was the day the drain bag hanging on the IV pole sprung a leak during priming. I was out of the room at the time, but the water leak alarm on the floor under the dialysis machine sounded immediately - and so it wasn't too much of a mess. I did have to rip everything off the machine and start over though.

Buttonholes can be a source of frustration. It officially takes 6 sharp needle sticks to "establish" each buttonhole, but my experience has been that it takes a good couple of months before they are really well-established. Before then, every single treatment, you don't really know for sure if the dull needles will both go in that day until they actually do. The buttonhole seems to heal over too easily sometimes, and only a sharp will penetrate it. So, you have to switch on the fly. While you're doing this, the machine might alarm, as it's taking a long time to start the treatment, and, if the other needle is already in, you have to make sure it hasn't clotted. You have to be able to keep your cool under these kinds of circumstances.

Other thing a person might not think about before it happens is that, if you've trained to do this alone, you're on your own on those days when you might not feel as well, or when you're actually sick with a cold or something. Trust me, there are days when you really have to kick yourself in the butt to get on treatment. It takes a lot of motivation. I would not want to be in a home hemodialysis situation where I couldn't get easy access to the regular dialysis centre if I needed to do so. So far, since I started home hemo, I've had 3 treatments in centre, two at the hospital dialysis centre on the day I had a fistulagram and then the following week after the angiogram, and then a few weeks later for follow-up when they had to do a transonic on my fistula. If any day comes when I'm really not in shape to do my own dialysis that day, either of the two local hospital acute dialysis centres would be able to take me, because all dialysis in this city comes under the same organization, the same nephrologists, etc. I find that comforting to know, because I don't have a partner who can do this for me.

One thing I had not anticipated is that, unlike at most dialysis centres, where they follow hospital rules as far as ambient temperature goes, you're not automatically freezing each treatment. Recently, we've had a heat wave here - actually combined heat and smog alerts for better than two weeks. I have a little apartment air conditioner, but, it's not in my bedroom where I do my dialysis. When it's hot, it's hot, and it's very uncomfortable.

Anyway, I just thought it fair to talk about some of the possible negatives, even though my experience so far has been positive overall. But, I will be happy to switch to nocturnal soon.

One last thing. Sometimes, I think it's actually best not to frequent internet forums for a while. Picture this. You've done your 6 weeks of training successfully (not a small achievement, really). You're happy as a pig in you know what as you start doing your own treatments at home, you're getting more confidence in yourself, in your training and in your machine every day, but then, there's always someone bringing up the potential risks and the dangers of it. Frankly, I prefer not to be constantly reminded of the risks posed by hemodialysis since I have no choice but to be on it - no matter whether it's at home or at the dialysis centre. Enough said!

In conclusion, I made the "leap", and I have no regrets. It's so great to be off something as simple as TUMS, and to be able to eat so many more things. It's truly wonderful to be off BP meds. In addition to diet, I just feel so much better and stronger.

Anonymous
June 15, 2005, 12:07 PM
Pierre, I wanted to address a couple of your comments. First I want to say how much I agree with the statement about it sometimes being difficult to get motivated to get on. I will say now, that at around the 3rd month at home I got fairly depressed about the reality of it all, that we don't even get a two week vacation a year, that this is something I have to do 6x a week maybe forever. However, about a month later it became really routine, I moan a groan for a couple of minutes and then just do it. I have set up down to 40-45 minutes and clean up down to about 20-25 minutes. I don't think I can cut more unless I could do away with water.

With regard to a decision to do incenter until transplant, one reason I was allowed daily home is that it keeps you healthier for transplant. At Kaiser I think they want to encourage home daily for their healthiest patients in order to keep them that way. I know my father ended up dying from the aftereffects of kidney failure and 3x a week dialysis (at home) not from rejecting his transplanted kidney. The heart damage had been done. I think that was one reason I really wanted home daily, to keep myself healthy and alive for as long as possible.

I have already been on the transplant list for 3 years and probably have at least 2 more to go, that is a long time.

Pierre
June 15, 2005, 01:26 PM
Hi Cathy

I agree with you entirely. I've also been on the waiting list going on 3 years, and I've seen other men my age (I'm 52) degrade to the point where they no longer are medically-fit for a kidney transplant (usually it involves the heart). I didn't want this to happen to me, so, that's one of the main reasons I decided to go for daily hemo at this point, whatever form was available.

I actually came close to this when I was hospitalized for 10 days in January because I had had chest pain while on dialysis. Luckily, I was only put on hold from the transplant list for a period of 3 weeks while they investigated it. Now I'm back on it, and let me tell you, it's depressing to know you are not active on the waiting list. This is kind why I suggest to people that they should choose daily hemo no matter what the machine will be for them. The machine pales in importance, as far as I'm concerned, in comparison to the health advantages of dialyzing 6 days per week. Of course, that's not to say that I don't have great interest in machines like the NxStage and the Aksys which can make the whole thing simpler for the patient. I think that's great, and it holds great promise for the future.

There are some misguided or misinformed people who think that as long as they keep exercising, their heart will remain fit despite dialysis. It helps, but there are other factors which are beyond our control. The esrd and the dialysis themselves cause damage no matter what we do. I think daily hemo offers some hope in this regard, or it at least puts some of the cards in our favour.

By the way, I had my monthly clinic appointment this morning, and now it's official. I will be starting nocturnal on Monday - with a 3 night stay at the hospital. One reason it took so long after I finished my training is because the dialysis centre where they do this is under renovation right now, so, they had to find an alternative site to do it in. I look forward to having some practical experience I can report on with nocturnal. They will be doing very frequent blood work from the first night on, but already, my neph said today they will be adding sodium phosphate and potassium. I'm already low on phosphorus just from short daily. My dialysate flow will be 300, and so will my blood flow, at least initially.

I'm getting faster in my setup too. I've got it down to under an hour now, not including the time it takes to put my needles in.

Pierre

Anonymous
June 15, 2005, 06:12 PM
Pierre,
Is your nocturnal program 3 nights per week or more? I have never gotten a clear understanding of the differences in 3x per week nocturnal programs vs 5-6x a week nocturnal. Excited to hear what you conlude about nocturnal vs short daily.

Anonymous
June 15, 2005, 06:17 PM
Can someone remind me - what is the set up and clean up time with NxStage since NxStage does not require a water system?

Pierre
June 15, 2005, 10:10 PM
Hi Jane. My nocturnal hemo will be 6 nights per week. I've heard of people getting by with fewer nights. My dialysis unit is Ok with that, but they recommend 4 nights per week minimum. It's kind of like short daily... Those who don't do the full program may need to watch their diet and fluid intake more on the off days, and they may not as easily be able to stay off BP meds and phosphate binders.

Pierre