From 5 to 6 Days

[HubbysPartner]

Well, we saw hubby's neph and it looks like we need to go from 5 days to 6 days.  Even though his numbers are good, he is starting to get his symptoms back, so we are adding another day.     Oh well, I guess it's worth it to have him feeling good again, but, darn it, it was nice to have the weekends off.

We are also going to be transitioning to the center his neph is starting with NxStage and should be with them by early March.  I'm so glad, cuz our center now seems so rinky dink.  The nurses don't seem to have the familiarity with NxStage that they should and they frequently don't have the supplies we need and we have to pick them up and load them in the car, take them home and put them away.  With the new center, everything will be delivered to us and we should get everything we need.    

Today, we aborted treatment for the first time.  We had trouble with the arterial stick and it looked like he infiltrated.  We got the needle out quick and waited for him to clot so we could see what was going on.  It didn't look too bad so he tried sticking again and it was better, but when we started, his arterial pressure was almost 200 at 250 blood flow speed.  We weren't sure what was going on, so we decided to abort treatment and I had to do a manual rinseback.  Such fun.  Oh well, we'll give him tonight for his access to be better and try tomorrow.  We always seem to have our troubles on Saturday treatment.  I guess the machine wanted to take the day off.    Anyway, it looks like we have the day off after all....

[willowtreewren]

It seems there is always something!

But truly, had you though about doing five days with not having two consecutive days off? Those tow days allow so many toxins to build up. Ugh.

We sometimes have a five session week because of my crazy schedule, but we usually try to avoid that.

Sorry for the problems and disappointments.

Aleta

[HubbysPartner]

Yes, we talked about taking a day off during the week and doing it on a Saturday or Sunday, but Lou likes his weekends off and the center didn't seem to have a problem with it.  But it looks like he needs that extra day for now.  I'm hoping his numbers get so great that his neph will take him back to 5 even if we have to separate the days off.  Oh well, we do what we need to do.

[Malibu]

Our center prohibited taking off 2 days in a row.  That is what we really wanted to do....they said no way.

Sorry that is happening...I dread the day MM has to go to 6 days. 

What were the symptoms he was 'starting to get back'?  If you don't mind my asking.

[HubbysPartner]

Malibu, He is starting to have trouble sleeping, the nausea is back and food doesn't appeal to him.  These disappeared when he started D.  We thought it was because we were getting him too dry, but his neph said they were symptoms of not enough dialysis.

[Zach]

Malibu, He is starting to have trouble sleeping, the nausea is back and food doesn't appeal to him.  These disappeared when he started D.  We thought it was because we were getting him too dry, but his neph said they were symptoms of not enough dialysis.

How many hours per treatment does your husband do?

[Zog]

If his labs are okay, then this is a question of improving how he feels.  You could take every third day off and slightly increase the time he is doing treatments the two days he is on (increase dialysate or lower filter fraction).  That way you get almost the same amount of treatment per month as you were before, but you don't have the 2 day fluid gain. 

However if lab results are what you are after, more days is better than more hours.  There is only so much phosphorus, potassium, urea you can take off in a treatment at a given rate.  The amount of potassium, urea, phosphorus, etc. you take off after a few hours is very small in comparison to what you removed the first hour.  Most of the chemicals taken out in the first hour or so were in the blood stream.  After that hour you are waiting for them to trickle out of every nook and cranny in the body.  If you do more treatments you give your body time to work those chemicals back into the blood stream and it's not so long that they build up in the nooks and crannies.  IMHO The only reason people do home hemo 6 days/week with NxStage instead of 7 is no one wanted to do the testing on Sundays when this was approved as a treatment method.   That and it would cost more and would be harder to get people to do.

If you just want to improve your labs and don't care about feelings or health you can take your labs on the last day before a skip day.

[Malibu]

Oh crap, MM is having these symptoms.  And they also dissappeared when he started D.  BUT, I thought the nausea and the appetite issues might be Renvela so we lowered to 2 at meals and 1 at snacks to see.....voila the nausea went away.  Appetite.....yet to be seen.

Sleeping issue -- I don't know.  His Kt/v is 2.36.  What was yours hubbyspartner?  And how long has he been on dialysis?

[Zog]

I would think nausea would have to be from the Renvela or something else he is eating.  My wife only felt nauseated AFTER treatment on conventional 3 day/week dialysis.  Medication wise, she was very nauseated taking Sensipar and had an allergy medication prescribed to be taken with it.  It made her very sleepy.

I am not sure about the sleeplessness.  My wife has been taking some form of acid reducer (Zantac, Nexium, Prilosec) for years and that seems to help with a lot of issues including sleep.

Take those binders.  She just had a parathyroidectomy for high PTH resulting from years of high phosphorus.  That wasn't fun.

I've heard stories of inadequate dialysis leading people to cut back subconsciously on meat and other high protein foods, but I would think 5 days a week is plenty of dialysis to keep that from happening.

I hope he feels better.  I don't really know how to answer your question.  You are probably going to have to experiment a little to figure out what works best.  If it was in a book none of us would need this forum!   

[tyefly]

I am now doing 5 days training for nxstage   and    last weekend and this weekend after my second day off of the machine... I felt a little bad......   I somewhat felt like I did before I starting D.......   I feel so good when I dialysis    and  I can feel the difference when I dont......   I dont like going without D for two days now..... I think our bodies get use to having less toxins.....  I bet that he will feel better doing more......   maybe he needs more per day.....   the key is to feel good and do what you need to to get that good feeling.....

[HubbysPartner]

He is doing 3 hours a day because we reduced the filtration fraction from 33 to 30 already.  His neph said that more time wouldn't work as well as an extra day precisely because you remove less toxins the longer the treatment time.  His labs are really good except for his kt/v.  It is just below 2.  We're not sure if it has anything to do with the variances we get from the machine for his UF but because he is still having symptoms, we are going to try this.  I called it nausea, but really what happens is he wakes up in the morning with a huge nasty gas bubble that makes him have dry heaves.  That went away when he first started D and now is coming back.  He has that nasty taste in his mouth sometimes too.  Protein is starting to become nasty to him again even though he makes himself eat it.  I'm hoping this works.

[Malibu]

If he is being bothered by gas we have used Simethicone with great results.  It helps the dialysis burps too.  Maybe he can take 1 or 2 a little while before he tries to get out of bed.

Of course that would be in the interrim...the objective surely will be for him to feel good without having to take anything.

Hope it works out for him.

[Zach]

His neph said that more time wouldn't work as well as an extra day precisely because you remove less toxins the longer the treatment time.

First I need to say that I am not well-versed on all things NxStage.  Maybe Bill Peckham (NxStage System One Cycler 2007 - Present,  4 to 6 days a week 40 Liters @ ~270 Qb ~ 8 hour per treatment FF33) can chime in on this, too.

However, while an additional day may be necessary, the notion that less toxins are removed the longer the treatment time is just not telling the complete story.

While Urea (BUN) is a relatively small molecule solute and is easily removed within the first few hours of hemodialysis, there are many other toxins called Middle Molecule solutes, which are time dependent, and therefore the more time on hemodialysis, the better the clearance.  Also, the middle molecule solutes, such as Beta2 Microglobulin are not included in the monthly blood chemistries, even though they can lead to problems in the long run.

Phosphorus, while also a relatively small molecule solute, is also time dependent.  That's why those on extended NxStage (nocturnal) hemodialysis, which is usually for eight hours, 4-5 days a week, have almost no dietary restrictions, and in the case of phosphorus--sometimes need to increase their intake.

Also, the larger the person, the more time on hemodialysis is usually needed.

Here's a good site about the issue of more time on hemodialysis and the removal of the middle molecule solutes.
http://www.nocturnaldialysis.org/HDW001.htm
http://www.nocturnaldialysis.org/nocturnal_haemodialysis.htm

 

[Malibu]

Zach, this is what our center told us.

Except for the phos, MM is short daily, we do 2:25 to 2:45 hrs a day depending on fluid gain (typically very little).  None of his phos is removed, or so it seems that none is removed.  It continues to be high every month. 

[Zog]

More time treatments/week or hours/treatment on dialysis always yields better long term outcomes.  I think people feel better if they get dialysis more frequently and have less fluid gain between treatments.  However their health may go downhill even though they feel okay if the treatment isn't long enough.  Patients who study this issue of treatment time will want to consider nocturnal.  Some center doctors & techs are concerned with how quick they can run blood and dialysate through a filter and still keep you alive with a minimum number of treatments at a minimum amount of time.  Most patients go along with this to their detriment since shorter and less treatments sound great.

NxStage formulas for filter fractions are geared towards maximizing the effectiveness of a small quantity dialysate compared to traditional machines.  If you are draining left over dialysate when your batch expires you may want to raise your filter fraction if you don't have the time to do a longer treatment.  The dialysate won't be as effective, but you will clear more urea. 

If you want phosphorus to leave, you have to be on a long time and often.  To improve phosphate/potassium removal you will keep the filter fraction the same and use more dialysate for a longer time or lower the filter fraction and use the same amount of dialysate for a longer time.

Most of the benefits of nocturnal vs short daily or 5 days vs 6 or 7 days/week aren't seen in the short term but only after months of dialysis.  However, if doing a longer treatment gets labs that are good enough to quit taking a certain medication and experiencing the side effects of that medication, do it.

When my wife was pregnant on dialysis we were processing about 96 liters of blood per treatment with the NxStage 7 times a week and she could eat anything she wanted to because her phosphorus and potassium levels were low.  Two years later we are processing about 50 liters per treatment and she is taking binders, eating less, and watching her labs suffer. 

[HubbysPartner]

My husband's phos and potassium levels are on the low side of normal every month.  He hardly has to use binders and doesn't have to watch his eating too much.  I think his problem must be urea.  We are processing around 86 - 90 liters of blood every treatment and since he doesn't gain much fluid, we don't need to take off too much.  His treatment time is around 3 hours at 30 Filtration fraction on 25 Liters of dialysate.  The flow rate is 500.  I am hoping the extra day will make the difference and he will start feeling better.

[Malibu]

I hope he starts feeling better as well hubbyspartner.  Let us know will you?

It is interesting the different flow rates, fractions, blood processesed etc.  And I wonder what the difference is.  We process about 64 L, flow rate is 450, FF is 33, and use 20 L of dialysate.  Maybe it is the weight of the person.  And labs I guess too.

[Zog]

I wouldn't think it would be urea.  It's probably low.  He may need to eat more protein.  It looks like he is getting ample treatment if phosphorus is low.

Try 6 days/week or move avoid having two skip days in a row.

How did he end up on dialysis in the first place?
Are his hemoglobin and iron levels okay?
Does he have any kidney function?

His gas may not even be related to dialysis.  Yogurt + fiber seems to fix me.

[HubbysPartner]

He's been diabetic for over 16 years which caused high BP and caused his kidneys to fail.  He does have some gastro problems, but this particular problem started when his kidney function fell below 20%.  It disappeared when he started dialysis, but now it is back, not as bad, but still there at times.  It is accompanied by a foul taste in his mouth and I think that's what gags him.  Simethicone doesn't help him all that much, although I encourage him to use it and he does when he gets gas during the day.  But this is first thing in the morning as soon as he gets up.  Hemoglobin and iron are on the high side at the moment so no EPO or iron for him for a while.

[Zog]

Sounds like you had it rough for the last year or so.  I am by no means an expert on diabetes but after some googling there is a condition called gastroparesis that you might need to ask the doctor about.  Diabetes can cause the nerves that control digestion to not work as well and that slows down digestion and makes the person feel full and bloated and causes the food to ferment.  They say to avoid fiberous and fatty foods.

Dialysis wise if he is not eating well he may be loosing weight and you may not know it if he retains fluids.  You may need to lower his dry weight.

Don't be afraid to figure out what it is.  The earlier you know the earlier you can do something about it or keep it from getting worse.

http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/

They are a few suffers of gastroparesis on this website.  You may want to do a search for them and ask them how they found out.

[Malibu]

I know!  It's morning sickness!!!  He's going to have a baby!! 

[HubbysPartner]

  That would something, Malibu!

Zog:  Yeah, it's been hard watching him go through this, but we try to stay positive.  We know about gastroparesis; he has discussed it with his doctor.  He's not to that point yet, he had an overgrowth of bacteria in his stomach a few years ago and his stomach is very sensitive now.  He does try to eat enough and he hasn't lost any weight.  We did some challenging on the machine to find his dry weight and we ended up getting him too dry so we have a good idea of where he should be.  Many days he doesn't gain anything or less than half a kilo, so we don't have to pull much fluid off.  Actually, now that we have correctly determined his dry weight, some of this might go away.  We will wait and see.  Thanks for all the good info.