Doing txs alone

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

Re home patients who do txs alone, do you ever have moments of not feeling strong as you approach the end of tx due to fluid removal and lowered blood pressure? I take my fluid removal to as close to my dry weight as I can get as this is what makes me feel the best in between txs. I am glad to have family support when it comes to getting off as I am affected by lowered blood pressure towards the last part of the tx. I recover quickly as soon as I get off tx and feel great. But I need support getting off.

Also, when I am getting close to my dry weight, I have to keep a very close eye on my blood pressure. When I am getting very close to my dry weight, my lowered blood pressure can often make me so sleepy that I may shut my eyes for a second and not realize that I am conking out. The second I catch myself, I sit up more and make myself come alert. Because one time this happened to me and I crashed at the tail end of my tx. Ever since this experience, I am extra vigalent to watch my pressure that much more carefully and make sure I do not allow myself to get too relaxed if I see my pressures are getting too low or my heart rate is too high.

But as carefully as I watch all of this, I would feel unsafe if I did not have my caregivers close by to be of assistance. So, I am wondering if those who dialyze alone ever experience what I have described here. For those who keep their fluid up with more of a cushion over their dry weight, lowered bp may not be as big a problem as it is for me. I am fluid sensitive so want to get as much fluid off as possible.

In addition to the possibility of crashing, I also come close to getting cramps pretty often and sometimes do for the same reason- because I pull off all possible fluid. It is great that at home I have total support if a cramp approaches and it subsides quickly. This is another reason why for me I can not be alone at what I call the crampy portion of my txs.

So, I’ve covered cramping and crashing. Another very potentially serious situation is dialysate leaks or blood leaks. Leaks can also lead to hypotensive crashes and worse if not caught in time. If saline was needed one would not be able to self-administer it if low blood pressure catches one unaware. So, for those who dialyze alone, how do you get around all of this?

2

I fear the same things… and as a result, do not do dialysis alone. For the most part, I would have to guide my spouse through any of these emergencies (if I was able) - but otherwise, he knows the emergency contact number for the tech on call. In two years, I have only had one close call with crashing - but came too, quickly with saline… otherwise, we experience a fair few short term power failures over the Summer which are a nuisance more than anything (but definety handy having a second set of hands) - I have to physically disconnect so I can go and turn my RO back on (much easier with someone else).

Sorry I didn’t really answer your questions, but agree with your sentiments.

Kidney Mom in Canada

3

Jane, I’d talk with your home training nurse or your doctor about the symptoms you have near the end of your treatment. Keeping in mind that dry weight is an estimate and it can change, the symptoms you report (low BP, nearly losing consciousness, cramps) sound like you’re getting dehydrated. I suspect your home training nurse or doctor would suggest that you take off slightly less fluid during your dialysis treatment (even .5 kg could make a difference). That would allow you to feel well enough not to have to depend on your family to help you at the end of your treatment and you wouldn’t have to be anxious about these symptoms.

4

Beth,
I regularly adjust my dry weight taking into account weight gain/loss or the fact that my pre-weight is partly fluid gain and partly real weight. With years of experience at doing this, I can guesstimate very closely. If at the end of my tx I have over-shot my goal a little, I simply cut the ultrafiltration off early. But the way dialysis works for me, I have to get as close to my dry weight as possible as even .5 above my dry weight leaves me feeling unwell.- it is a feeling like being water-logged or like too much fluid is unremoved. When I get the correct amount of fluid off for me, I am able to breath freely again and I feel at balance with the tx. Hard to describe to someone who has never experienced it, including doctors and nurses, although the better ones know what I mean.

Although it sounds logical to have a .5 cushion, it doesn’t work for me at all. It does seem to work for some patients who can handle more fluid in-take. I’ve read where some patients say they can handle fluid gains of as much as 3.0 and feel fine with it. But I’ve also read that 2.0 should be the limit as more than that is taxing on the heart. Well, for me, just a 1.0 gain is stretching it to the limit.

Considering my fluid gain for the day is usually only about 1.0 average, .5 is approx. 50% of my fluid gain. So, I don’t want to not remove that .5 - I dearly need to be able to drink as much fluid as I can in a day or otherwise I would be dehydrated in that way.

Re the end of tx symptoms I mentioned, they might sound scarier to an inexperienced patient or a non-dialysis person. Similar to kidney_mom, I only crashed one time since being on home txs. It was a lesson in knowing how to watch my blood pressure and be more aware of bodily symptoms. It has never happened again as I better learned from that experience where to draw the line. But to get all necessary fluid off for me, it is essential to get as close to my dry weight as I possibly can, so that means observing blood pressures and listening for bodily symptoms very carefully at the end of each tx. It can’t be avoided in my case.

So, it may be that dialyzing alone works for some patients while not others. Aside from tail-end fluid removal issues, there are other emergency situations that can occur as I previously mentioned. I would like to know how those who dialyze alone cope in such situations. Like kidney_mom said, an extra pair of hands comes in handy or might be very necessary. If one lost consciousness for some unexplained reason, who would call 911? It is possible to pass out so quickly that even with someone in the next room, contact can not be made.

I am in favor of dialyzing alone if a patient can manage it with no support, although I think there could be some times when they might get in trouble. One things for sure, I believe one can be safer at home then in some dialysis clinics! I have been in some clincs where patients crashed all the time, and with nurses somewhere on the floor, the patients were not even noticed! Since I refused to waste my life sleeping txs away, I was always the person who alerted the nurses to the patients who had crashed- pretty exciting but not really.

It is not a sign of weakness or dependency, however, to require assistance. Kidney disease/dialysis affects patients differently. No two patients are alike in their coping abilities, energy levels etc. Other co-morbidities, aging etc affect the picture. And just because someone gets better dialysis does not mean that he will be totally rehabilitated and fit for the workplace.

5

Hi Folks

Hey Jane

Sorry to be a pain , but could you tells us how many txs a wk you do ? When first started doing home I did it at a time my wife was around. It wasn’t what we wanted but till Eleanor saw me do a # of TXs on my own we made the choice not to go all the to dry wt. that the center wanted. It turns out my real dry was about 10 kilo more. The dry wt the center wanted 95 K , right now my dry wt 105K and things are fine. I was doing at home 6 days a wk at fast speeds. now I do 6 nights a wk at slow speeds. My avg time on the machine is 9.5hrs a night.

Hope that helped

Bob OBrien

6

My Jane adjusts her dry weight every day based on BP coming off in the morning, pre-BP and startup BP in the evening. We’ve learned it is better to err on side of taking too little off as BP can fall fast after a certain point with all of the symptoms described. If the BP is a little high at the end of treatment we just take a little more off. If someone was dialyzing alone this should probably be done in 0.1 increments so the machime would turn off automatically before getting into too much difficulty.

Mel

7

[QUOTE=Mel;15849]My Jane adjusts her dry weight every day based on BP coming off in the morning, pre-BP and startup BP in the evening. We’ve learned it is better to err on side of taking too little off as BP can fall fast after a certain point with all of the symptoms described. If the BP is a little high at the end of treatment we just take a little more off. If someone was dialyzing alone this should probably be done in 0.1 increments so the machime would turn off automatically before getting into too much difficulty.

Mel[/QUOTE]

Can you show mathematically how you select a goal based on the 3 blood pressures?

When you say if the bp is a little high at the end of the tx you just take a little more off, how do you mean this? Do you add time to your tx so you can get more fluid off or do you increase the UF goal before the tx is over? If so, at what point do you do this and how do you know how much time to give it?

8

[QUOTE=bobeleanor;15846]Hi Folks

Hey Jane

Sorry to be a pain , but could you tells us how many txs a wk you do ? When first started doing home I did it at a time my wife was around. It wasn’t what we wanted but till Eleanor saw me do a # of TXs on my own we made the choice not to go all the to dry wt. that the center wanted. It turns out my real dry was about 10 kilo more. The dry wt the center wanted 95 K , right now my dry wt 105K and things are fine. I was doing at home 6 days a wk at fast speeds. now I do 6 nights a wk at slow speeds. My avg time on the machine is 9.5hrs a night.

Hope that helped

Bob OBrien[/QUOTE]

Bob come on- you’re not a pain : ) I dialyze 6x shorty txs. When I hear patients like yourself say you needed a 10K adjustment in your dry weight!!!, I am always amazed. Goes to show how different ppl are when it comes to how much fluid they can comfortably take in, carry and remove. If I had that much excess fluid in my body, I would not be able to breathe and you all would be telling Jane goodbye farewell lol. Or the other way around, if even .1 too much fluid was pulled off me and it kept going, I would go into cramps, a crash, shock and whatever comes after that which we all know is not good.

What is the reason why you run 9 1/2 hrs if I may ask?

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[QUOTE=Jane;15850]Can you show mathematically how you select a goal based on the 3 blood pressures?

When you say if the bp is a little high at the end of the tx you just take a little more off, how do you mean this? Do you add time to your tx so you can get more fluid off or do you increase the UF goal before the tx is over? If so, at what point do you do this and how do you know how much time to give it?[/QUOTE]

It’s not math, just judgment. Since we’re running nocturnal the “End of Treatment” is our morning alarm clock. So we would just let the UF run on the Fresenius when the original goal is met, or dial in another 0.1 or 0.2 on the NxStage, check BP again and repeat, if necessary. As noted it’s best to stay on the high side and work down.

Mel

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[QUOTE=Mel;15852]It’s not math, just judgment. Since we’re running nocturnal the “End of Treatment” is our morning alarm clock. So we would just let the UF run on the Fresenius when the original goal is met, or dial in another 0.1 or 0.2 on the NxStage, check BP again and repeat, if necessary. As noted it’s best to stay on the high side and work down.

Mel[/QUOTE]

First of all, going back to your previous post, I am asking when you say she bases her dry weight on her 3 blood pressures, what do you mean by that. Can you give an example please?

Now a significant difference between your wife’s txs and mine is that she is doing slow nocturnal txs and I am doing short txs at a significantly higher BFR. Since I have never experienced nocturnal length txs, I don’t know what the fluid pull and it’s accompanying symptoms are like. But my concept is, it is so gentle, one probably has few symptoms of fluid or toxin removal. So, then I would think that during the tx, as well as at the final moments, there is less turbulence to contend with. If you then remove .1 or .2 more at the same low BFR, I would guess the tx would run another 30-45 min. which wouldn’t be a big deal if one was finishing up a nocturnal tx in the wee hrs of the morning anyway and is asleep throughout that time or resting.

Since I do my short txs in the evening, I like the fact that they are very short and then I can spend the rest of my evening doing productive things. But slowing the BFR down at the last part of tx is an idea if I could figure out a way to do it without adding more time to the tx. It would be like UF profiling where one can run at a higher rate initially, get the fluid off and then coast to an end using a lower UF rate or with no UF at all. This is a possibility and I tried using a UF pattern like this once. The first pattern that was used didn’t feel comfortable, however. And I didn’t try other patterns as dialysis staff I had weren’t educated enough on how to do it and I didn’t feel safe pursing it without better oversight.

I know that with dialysis there are ways to adjust things to make for more comfortable txs. It doesn’t sound like what you suggest would work with short txs, without lengthening the tx., but it is possible manual UF profiling might work if I could figure out how to do it.

11

Jane uses her morning “off” weight" as the tentative dry weight for startup the next evening. I add 300 ml to account for the rinseback on the Fresenius or 252 ml if we’re using NxStage (I also have to subtract 400 ml to compensate for systematic error on the particular NxStage machine we’re using now, but that wouldn’t apply to other NxStage machines). Jane subtracts 100 ml to allow for transpiration/perspiration losses and then adjusts this UF target up or down if her previous “off” BP, her pre-dialysis BP or after-startup BP are a little high or a little low. We regard a systolic BP of 115-125 mmHg as the desirable BP target for her. As noted if her BP is high the next morning (say, much over 130) we would run a little lomger and take off another 50 or 100 or so ml until the BP looks good.

I agree that all this is much easier with nocturnal with slow rates.

Mel

12

[QUOTE=Mel;15854]Jane uses her morning “off” weight" as the tentative dry weight for startup the next evening. I add 300 ml to account for the rinseback on the Fresenius or 252 ml if we’re using NxStage (I also have to subtract 400 ml to compensate for systematic error on the particular NxStage machine we’re using now, but that wouldn’t apply to other NxStage machines). Jane subtracts 100 ml to allow for transpiration/perspiration losses and then adjusts this UF target up or down if her previous “off” BP, her pre-dialysis BP or after-startup BP are a little high or a little low. We regard a systolic BP of 115-125 mmHg as the desirable BP target for her. As noted if her BP is high the next morning (say, much over 130) we would run a little lomger and take off another 50 or 100 or so ml until the BP looks good.

I agree that all this is much easier with nocturnal with slow rates.

Mel[/QUOTE]

Digesting your method, I would say you are essentially doing the same thing I do, but in a slightly different way. Your way would be more comfortable, but you can do it that way because you are on a nocturnal tx, the BFR is gentle and you can afford a little extra sleeping, resting time.

With my short txs, the object is to get the tx over and have time to get up and enjoy the rest of the evening. So, I guesstimate a goal, am always very close, will get more turbulence during the tx if I overshoot the goal a little, must watch bps very carefully and sit still towards the end so I don’t invite cramps or worse, and when I see by my bps/heart rate and feel by bodily symptoms that I am dry, if there is more UF to remove, just shut it off.

Definitely your system is more comfortable and I see how you use bps and scale weight, but unless there is another way to do it with a SDD tx without tacking on more time, that is the dilemma. Manual UF profling is the only thing I can think of, which even still, may not work for everyone as some may just not be able to comfortably tolerate fluid removal at faster rates over a relatively short time, and for which guidance/oversight is hard to find.

13

Jane:

I’ve dialyzed alone for the past two years using a NxStage System One six times a week. I often nod off when I get low. It never last for long. When this starts to happen I either give myself a bolis or lower my goal or both.

Many people I know have leak detectors around their machines to help with identifying leaks. I don’t use these. I have had a couple of leaks of these two years. I always catch them or the machine alarm goes off before there is a mess. I’ve never had a blood leak other than at my button hole sites. I pay pretty close attention to those.

My wife works full time and I have two young children. If I had to have a partner, at home wouldn’t work for me.

But being able to care for myself gives me a sense of control over my health and a feeling of independence that I had lost when in center.

I understand your fears, but for me they have not caused any problems.

Good luck, Erich

14

Although I am capable of dialyzing by myself, and have done so on only 1 occasion, I feel better having someone at home when I do it. Even though my wife went with me to the training, she has no idea what to do if something goes wrong, except to pick up the phone and call someone on my emergency list. Still, they are good for an extra pair of hands just in case someting happens.

15

[QUOTE=TheRiverdude;15871]Jane:

I’ve dialyzed alone for the past two years using a NxStage System One six times a week. I often nod off when I get low. It never last for long. When this starts to happen I either give myself a bolis or lower my goal or both.

Many people I know have leak detectors around their machines to help with identifying leaks. I don’t use these. I have had a couple of leaks of these two years. I always catch them or the machine alarm goes off before there is a mess. I’ve never had a blood leak other than at my button hole sites. I pay pretty close attention to those.

My wife works full time and I have two young children. If I had to have a partner, at home wouldn’t work for me.

But being able to care for myself gives me a sense of control over my health and a feeling of independence that I had lost when in center.

I understand your fears, but for me they have not caused any problems.

Good luck, Erich[/QUOTE]

For me, when I am getting low, the objective is to get the remaining fluid off, not leave it on or put it back on. As I said previously, some patients can handle a fluid cushion, but I can not. I feel at my best when I remove all possible fluid. So, this means I need someone nearby, not because I have fears, but because it is a good safety measure in my case.

I also would benefit from an inexpensive leak detector as the side of the machine the leak runs out is not clearly in my view since I prefer to dialyze in bed.

I think the thing is, we each must find a way to dialyze at home that works for us. I think it would be nice to not need any help at all- I’m all for it. But as others have said, a second pair of hands is helpful, and I do think that it is possible for a rare emergency to occur, so I personally want back-up and am glad that my family is supportive. If I didn’t have family support I would probably go it alone as home care is so much better and more dignified than institutional care.

16

Hi guys…

Had my first ‘real’ emergency last night, and let me tell you - an extra set of hands was needed. Got on, as per usual, venous pressure was reading normal, but NO arterial pressure what so ever - was starting to get worried that needle placement was incorrect, but that would normally yield a high arterial pressure alarm… start looking around, everything seems okay. Turn the pump way down, because I have no idea what is going on. Two years being home, 4 years on dialysis - I always run around -190 arterial - I am hooting and hollering at my husband who is playing outside with our daughter. I finally get his attention, and we get a hold of our home dialysis technician - low and behold it is a faulty cartridge, so I have to equalize the diaphram pressure - NEVER done this before (open the blood pump - full of blood) - pull out the cartridge, try to re-align it, open arterial chamber, venouse chamber, close the blood pump door - then of course, air in blood, rectify that… had to intentionally kink the arterial line to see if it would sense it (not safe to proceed if it would not - as it might not pick up air, etc - it did, thankfully).

I was able to get through the treatment, knowing that the sensor on the arterial port was not functioning properly - it read numbers not reflective of the arterial pressure.

Long story short - I would have been up a creek had I been by myself - because I did not even know if I could return my blood. I guess worse case scenario I would have lost the system set up, and my blood, but my hemoglobin is low as it is. It is one of those ‘strange’ things, that you are not always trained for.

17

Hi Kidney_Mom!
Good illustration of what can go wrong. Another point to be made is, I feel my training for home txs was not comprehensive enough. I’m amazed that my clinic and the machine co. would let a patient graduate to home txs without making sure they were thoroughly trained.

I have since caught up on the most common things that can go wrong and know how to handle them now, but I did so under great duress. I was not going to give up- I wanted home txs.! I made it, but it was tough. A big chunk of my summer was robbed as I had to devote myself to studying the machine operation every single day. I made it, but I still have a sketchy idea re the rationale behind numerous of the functions of the machine and know I really need that in order to be fully competent in any given situation.

Not only is a 2nd pair of hands essential at times, but add to that, a 2nd, or even 3rd, cool head comes in handy, too. Nevertheless, if someone is so well-trained and/or technically inclined that they are capable of handling every possible scenario, I would not begrudge them the right to dialyze alone. As I said previously, they will be a lot happier, healthier and more comfortable than they will be in most clinics. I would just want them to be sure they are prepared for all eventualities.

18

Kidney Mom and Jane:

You both must be on a Fresinius machine because what you both describe wouldn’t occur with the NxStage System One. I too used to use a Fresinius - before the Baby K - at home. My wife did everything. Of course I was much sicker at the time. But, I don’t know that I would do a Fresinius by myself. If things go wrong with NxStage I just return my blood either automatically or manually and I set up for my next run. Whatever I didn’t get off during an interrputed run can easily be taken care of the next day.

Take care, Erich

19

Hi Erich,

Thanks for taking the time to respond. I have used the Fresinius in the past, but am now on the Gambro/Phoenix Machine… very same idea. The NXStage system is approved for use in Canada, but not sold in Canada as of yet - and not approved by our hospital. Hopefully one day - as is certainly sounds less complicated.

Over the years, I am gettting more comfortable trouble shooting, and am starting to be pretty good at resolving issues that are new to me - but every now and again, there is something machine related that you cannot predict or necessarily be prepared for.

Anyhow, this has been a good post.

Kidney_Mom

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I have dialyzed alone 6 days a week for over a year.