Missing dialysis session

[Zog]

When you start training just hop on over to the NxStage forum for advice.  We did our training in only two weeks.  After you have used the machine awhile it becomes like changing oil in your car or baking a cake.  Not that difficult, you just have to do everything in the right order or things will go wrong.

All a dialysis machine is, is a set of 3 (or 4) pumps for blood (red), dialysate (green), pee (yellow) and a filter where they mix.  For blood, the red line sucks and the blue line blows.  For dialysate (and pee), the green line sucks and the yellow line blows.  The yellow, green and red buttons on the machine control three pumps for these. There is a 4th pump which a computer uses to balance things using pressure sensors I believe (but I don't know).  You have to set the rate of each pump and press a button to toggle over to how much it will pump during treatment. If the yellow pump is running faster than the green pump, the yellow pump will suck water out of the blood through the filter (there is the pee).  The dialysate is salt water that is supposed to have the right combination of salts in the blood.  It levels out the levels of these salts in the blood through the filter using osmosis.  This is actually more info than you will get in training but I have an engineering background and understanding what is actually going on with out using a bunch of medical jargon helped me a great deal.

The hardest thing my wife had to do was learn to stick the needles in and most of that was a psychological issue.  Remembering error codes and what to do for each one and developing the finger dexterity to unscrew and reattach all the lines and syringes is just something you get better at over time and no amount of reading will help in most cases.

[Pierre]

I personally do not think that dialysis is required 3x a week for 3 hrs a day for her.  I know there are people on this board going for 4-5 hours each time.  I question the necessity of every medication she gets, every treament, etc.  Matter of fact, everybody should question all phases of medical treatment in any way, shape and form.

I'm sorry, but you're not he person who is to decide what kind of treatment your wife should have, andwether 2 or 3 sessions are enough... That's up to her doctors.

[Zog]

My wife would still have her kidneys had her doctor done her job.  Questioning doctors is a right we all have.

[RichardMEL]

davej, you have not said WHY you question 3xweek for 3 hours for your wife - that she doesn't need as much. That's a bare minimum (yes, I know some folks in this board report doing 2x/week, but that baffles me). 3x/week is normal for most patients. You have not given any indication as to why you think she should need less. I agree, unless you're a trained nephologist, or renal specialist, you don't really know.

I understand that you want less to fit in with your lifestyle, but to be honest say she only did Tues and Thursday treatments, she'd be overloaded with fluid come next Tuesday, and toxins, and would probably feel horrible and not be able to partake in all the travelling around you want to do on the weekends - that would definitely cramp your lifestyle choice.

Have you asked if she can go on Mon/Wed/Friday because of your weekend commitments(you may have mentioned this in a post, but I did not see it)?

As an alternative perhaps you can work with the centre for the weekends you want to be away to arrange to doa  treatment on the Friday afternoon or Monday morning rather than Saturday. You need to work with the process to get the best out of it for your wife. Skipping should NOT be an option - it will be worse for your wife in the long run for any number of reasons.

[tyefly]

I just finished training with Nxstage  and I have been at home for two weeks now....  I have only been doing dialysis since last Sept......   I went with Nxstage because I plan on traveling like you ... RV  and never coming home..... well I will still have a house but.....  another story.....   I know people who dialysis with nxstage  4 days , 5 days and 6 days a week...   they do those days based on their labs and how they feel.....  More dialysis is better.... and makes you feel better.... Go with the Nxstage.. she will be able to go anywhere with you and do any amount of days she needs to feel good and enjoy life....   there are no set days off.... but when you go more than two day in a row with out dialysis you may feel bad....  Keep asking question  and all of us will give you the support you need so that you can travel and go and do everything that you both want to do.... that is what is important in life.... 

[Zog]

Although, it is impossible for any of us on here to diagnose or prescribe any kind of treatment for your wife (we aren't doctors, and even if we were, we don't know all the facts.)  I am pretty certain your wife's health will not be hurt by more dialysis.  More dialysis is always a good thing health wise for almost all people on dialysis.  The only reason it isn't done more for most is purely for economic reasons.  It sounds like you have some economic reasons of your own for wanting to work Saturdays.  Will a MWF schedule work for now?

If your wife still makes urine and still has some GFR or whatever it is... (my wife never has been in the tweener stage of ESRD, so I don't know much about it) maybe she can survive on less treatment for now, but kidneys rarely get better, you are going to have to accept the fate of 3/week dialysis until you either get a home option or a transplant for her.

[davej]

Thank you for your responses.  Looks like we are going to go for the NxStage classes.  Hope to catch on quickly.  This whole thing has been an educational process for us.  All of this dialysis stuff was thrown on us (my wife) suddenly last November.  I questioned the necessity of going 3 times per week when I knew little about the process.  I do understand now that the more frequent treatments are, the better off my wife will be.  I've observed the amount of fluid accumulation between treatments and it appears to be averaging roughly 3 lbs (between 1.2-2 Kg) and realize that if she missed a treatment, than we would have to get rid of roughly 3-4kg the next time added with the toxins which had built up.  I am still having a hard time believing that my wife's kidney's detiorated so fast (May 2008-Sep 2009).  She's had diabete's for awhile and supposedly that is the main cause of her kidney disease.

To add to the problem, she has the Hepatitis-B antigen and one of the doctor's claims that she contracted it when she was a kid growning up in the Philippines.  Apparently, she was never tested for it until Nov 2010.  I am not too sure about her getting it there because none of the other family member's have it.  Also, when a person has Hep-B, they might also have liver problems.  If my wife had it for all those years, I would tend to think that she would have some kind of problem with the liver, but she doesn't.  Therefore, I suspect that she could quite concievably contracted it during a stay in the hospital last year in Sep or Nov.  What do you think?  BTW, this was an added problem for her dialysis treatments because she had to be isolated from others.  What a mess all this has been.

[tyefly]

  Yes   sounds like alot.....    I too only found out about my kidney problems last April 09 and my kidney function went down fast and started on Dialysis in Sept 09.....   its alot to learn in a short amount to time....   but with sites like IHD  a  person can gain alot of imformation from some wonderful people..... I have learned alot from this site....   I beleive Nxstage will be wonderfull for your life style.....   the amount of water gain inbetween treatments sounds fairly normal.....  and that is good....
 I dont know anything about  the Hep B .....  but I am sure there are people here that do ....   take care and keep in touch.... we are here for you and your wife.....

[davej]

  Yes   sounds like alot.....    I too only found out about my kidney problems last April 09 and my kidney function went down fast and started on Dialysis in Sept 09.....   its alot to learn in a short amount to time....   but with sites like IHD  a  person can gain alot of imformation from some wonderful people..... I have learned alot from this site....   I beleive Nxstage will be wonderfull for your life style.....   the amount of water gain inbetween treatments sounds fairly normal.....  and that is good....
 I dont know anything about  the Hep B .....  but I am sure there are people here that do ....   take care and keep in touch.... we are here for you and your wife.....

Thanks for your response.  I mentioned that we sell merchandise (shoulder bags, jewelry, clothing, etc.) at a number of festivals (CA, OR & AZ) throughout the year.  Just before my wife got sick, we sold at a number of events along the coast in July/August, not far from you.  Tillamook County Fair, Coos County Fair and Winchester Bay Oceanfest.  I love the area and I have spent quite a bit of time along the Oregon Coast.  No trip this year.  We really have to change our schedule around.

[Zog]

I'm glad you have come to the conclusion that more dialysis is good.  Some doctors even have a hard time with that.  A hospital resident told me once, "our machines are so much better than your home machine, so we only have to do it 3 times/week."  There are a lot of half truths in that statement, unless they have a time machine hooked up to the blood pump.  Normal kidneys are 24/7/365 dialysis machines.  Anyway, NxStage is great.  I'm guessing you have already had the Hepatitis B shots since you are married to her.  So, you won't have to worry about isolation at home.  I hope to hear your wife will be able to do treatments at home, or on the road, on a balcony overlooking the sea, on Sunday evening at 7:00 PM, etc.

 

[Bub]

My dialysis buddy Peter has taken to coming in only one session each week.  I am worried sick about him.  He has some residual function left but not enough.  Staff has given up warning him.

[RichardMEL]

My dialysis buddy Peter has taken to coming in only one session each week.  I am worried sick about him.  He has some residual function left but not enough.  Staff has given up warning him.

That IS a worry - but he's been informed of the dangers and it is HIS choice. At some point you just have to recognise that people make their own decisions for whatever reasons and need to recognise that bad things can and likely will happen.

I hope he will be OK.

[davej]

Probably placing this in the wrong thread but I have been posting here about possible missing of dialysis sessions.

I mentioned that we were considering NxStage for reasons explained earlier in this thread.  My wife has been going for dialysis since November now and we made the decision to go with NxStage.  The whole process has been explained to us and it seems okay.  However, my wife visited the surgeon and we discussed her access, which will be on her right wrist.  My wife is tiny and her veins are not too prominent and the surgeon said that he might have problems getting a fistula placed over there.  Had all the mapping done awhile back.  He also mentioned that if he can't do it, then he would put an artificial vein placed in her upper right arm and then I was told by the NxStage people that we would not be able to use it if we did NxStage.  So, we are in limbo right now as we await for my wife's surgery date and it will not be determined that she will be able to train for NxStage until they are sure that the fistula will suffice.  Anybody have similar problem with their veins?  Also, I was under the impression that the machine was transportable enough to be able to go away for the weekend and use it.  However, according to the NxStage people, it is not really designed for partability.  I'd like to hear from people who travel around with it.

[Malibu]

You CAN use NxStage with an AV Graft, and that is what it sounds like when you mention the artificial vein.  This is what my husband has and several others on here and we all do NxStage at home.  Further discussion is needed.

Also MANY travel with it.  Check out the travel section......  You will have to hunt for the posts but they are there.

[Zog]

My wife had some issues and they took a vein from her leg and placed in her wrist for her first fistula... I don't know what they call that.  It worked well.

Anyway, you can take it anywhere as long as you have room for it and the dialysate.  Maybe someone at your center broke theirs and is ruining it for everyone.  As far as weekend trips go.... we just do dialysis on Friday and Sunday nights to avoid taking it with us for a Saturday night stay somewhere else.  Saturday becomes our skip day that week.

[Bub]

RichardMel I can understand what you are saying, but we have lost so many people at my dialysis center in the last year and so many of them were my friends (as Peter is).  I know it is his body and his life, but I dont want to loose him if possible.  And when we loose a dialysis patient it is often a double hit because often times I have become friends with a spouse who also disappears since there is little reason to come there anymore.

I guess my concerns come from the residual grief I have for my friend Dale who passed recently.

[Ken Shelmerdine]

It depends on how much residual kidney function you have left. I skipped two dialysis sessions over the Christmas period
without feeling any ill affects but I wouldn't recomend this for everyone.

[Bajanne]

Weighing in on this a bit late (as per usual these days), but I am with those who say you should try never to missa session.
Having said this, I did miss a session for the first time in my five years, when I went to Barbados this year to celebrate my birthday.  However, for me, it made me all the more careful and when I had my session, I had on less fluid than I nomally would.
The rule of thumb is DON'T MISS.

[KICKSTART]

Everyone is focusing on the fluid but what about all the other stuff dialysis does , like remove the toxins ! Missing dialysis is not just about being careful with your fluids , its far more than that !

[Ken Shelmerdine]

Everyone is focusing on the fluid but what about all the other stuff dialysis does , like remove the toxins ! Missing dialysis is not just about being careful with your fluids , its far more than that !

Kickstart maybe it's because fluid build up by missing one session would create an acute problem whereas toxin build up would be minimal.

[KICKSTART]

Yes Ken but we are not talking about missing just one session and lets face it minimal or not a build up of toxins is not a good one ! I just dont want people who are new to dialysis to think its all about the fluid .. when other things have to be considered !