why 'not' skip treatments

[boswife]

Ok, hubby wants to skip a treatment because he is doing so good and not gaining weight (retaining water)between treatments.  I see his point or *opnion* but this has only been the last few times and im not comfortable with his wishes. I will say, his blood numbers are always good.  Is he/ok we once again in denial?(i think thats a dangerious place to be)  Can we still lick this thing on our own??  His GFR had been holding (pre dialysis)in the 20's but he had got sick and it droped to 11 and was put on dialysis.  Would he really have bounced back?  Anyway, i know i've gone over this with yaall before so sorry to rehash, but just frustrated with his desire to skip just cause HE thinks he'll be ok with it.  Any response will be appeciated... Geesh, sometimes even these thoughts are stressful enough in themselves.   

[caringpct]

I would check with the doctors to see if maybe his time could get cut down to start out. I never advice my patients to skip just because they feel better. I explain it to the newer patients that my kidneys work and clean my blood 24/7, while their kidneys may only clean (depending on how much function is left) 12 hours a week, its not all about fluid removal. 

[Rerun]

I've had to skip due to fistula problems where surgery was backed up and I lived.  If he was at 20GFR and then 11 and put on dialysis he may be able to skip a treatment in my own opinion.  I guess if he doesn't feel well, he won't do it again.  If he watches what he eats and doesn't put on fluid he better skip now because down the road when he doesn't have any urine output it will be really hard to skip a treatment.  Fluid overload is a killer.

Don't be afraid to ask your nephrologist this question.  I think he will be honest with you and say it is okay once in a while for him.  Not all people can skip.  I'd be miserable by the next treatment.

Just make sure and call in.  They get really pissed if they waste all the supplies setting up your machine and you are a no show.

[okarol]

I cannot recall what caused your hubby's kidney problems so forgive me but is it possible he has acute kidney failure, where there's a possibility of recovering function? Or does he have a disease where the damage is chronic, and will continue to degrade over time? If it's the latter then he should probably try to keep his appts. and not risk his health. Even if he's still urinating adequately, they say it's quality, not quantity, so he might build up toxins even if he's not holding fluid. Also, if he skips, they may consider him to be having compliance issues, which could be an obstacle if he's hoping to get a transplant.

[texasstyle]

I deal with all the time with my husband. Denial issues etc.. The thing is his treatments are what is making him do ok and feeling good just the way they are. him making his decision to skip or adjust his treatments in any way or most likely going to be reflected in a negative way.Also, it is not good to get into this way of thinking mode because he can easily start "making other" dialysis decisions that may result in negativity too. I know where you're at, I deal with this at home. That being said, there is a man at my husbands unit who is doing very well on longterm dialysis and they actually cut his time down 15 minutes. He plays an extensive, pro active role in watching his diet & taking the best care of himself in between sessions.

[sullidog]

You shouldn't skip treatments, My labs and stuff are good so my neph has decreased my time. I started out at 4 hrs, then down to 3 hrs and 45 mins, now holding steady at 3 and a half hours.
Troy

[RichardMEL]

Clearly this is one that should be taken up with the medical experts who cover all aspects of hubby's condition and history. It may be acute and may recover, but probably not - if his function had lowered to the level of 20GFR then clearly the kidneys have already been failing. Still, the 11GFR could have been an odd dip, but I am sure thy wouldn't have started him on dialysis just due to one lab being out of whack - you need to see a trend. And that works the other way - just because hubby feels good now, doesn't *appear* to be retaining fluid(but it can hide anywhere, and a no obvious change in weight could reflect a loss of real body weight that is being masked by fluid gain) - missing treatment will just increase the toxins in the blood(which aren't related to fluid anyway) and that will make him feel worse in the long run. Definitely one for the neph. Get his labs redone and see where he's at. The fact that he is feeling good is testiment to good dialysis IMHO, and that's why he should keep it up, not a reason to skip.

Besides you don't want him registered as non compliant do you?

[boswife]

Boy, all this information is VERY appreciated.  It's amazing how many things there are to think about and it always helps to sort them out with the help of all of you.  thanks from my heart... wifie here

[peleroja]

Don't forget, just because he doesn't need to remove fluid, he still needs to remove toxins.  I agree with the folks who think talking with the neph to maybe lower his time on the machine is a good idea.

[boswife]

thanks again.....and........................ instead of lessing time, would it benifit his heart to do the same time just slower?  something i wonder about...

[KICKSTART]

Has he actually skipped any treatments?  ..Trust me on this ..if he has not ..let him ! I promise you he will never do it again! I had to one day last week , not through choice , but my front door lock jammed on my way out to dialysis and i couldnt go and not lock the door , so i rang the unit but by the time the guy had been , repaired it , it was too late to go in for my session ..i crawled in when my next one was due , honestly .

[boswife]

well, unfortunatly he has misssed one before and/but he did fine with it. (he had diarreah  )  Though i took him there, he just couldnt go in so  we went home.  Now, mabie cause he was loosing lots of things/fluids from everywehre (mouth, rear etc) is why he ended up feeling ok when he went back, but because of that, he thinks he should be ok to do it once in a while. Im sure sorry how you felt though Kickstart..  How awful!! Im sure if that had been the case with him, he too would change his thoughts.  He's actually very dedicated to his treatments, diet, exercise and overall health, but but we just always want to do whats right and want to make sure he really does need to be there. (mainly cause it's a bit taxing to the heart, and he already has those issues)  It's a whole world of learning, and im just thankful mostly that his attitude is so good, and that there is you all to help sort things in our heads..

[Bill Peckham]

well, unfortunatly he has misssed one before and/but he did fine with it. (he had diarreah  )  Though i took him there, he just couldnt go in so  we went home.  Now, mabie cause he was loosing lots of things/fluids from everywehre (mouth, rear etc) is why he ended up feeling ok when he went back, but because of that, he thinks he should be ok to do it once in a while. Im sure sorry how you felt though Kickstart..  How awful!! Im sure if that had been the case with him, he too would change his thoughts.  He's actually very dedicated to his treatments, diet, exercise and overall health, but but we just always want to do whats right and want to make sure he really does need to be there. (mainly cause it's a bit taxing to the heart, and he already has those issues)  It's a whole world of learning, and im just thankful mostly that his attitude is so good, and that there is you all to help sort things in our heads..

I'll be a contrarian and say that I skipped treatments back in the day, when I was dialyzing incenter, and lived to tell the tale but I talked to my unit and doctors in advance so no one was setting up a machine only to have me no show.

Life happens, we're suppose to be dialyzing to live. My schedule modifications usually happened before or when traveling, some times I'd organize things to give myself two weekends in a row or three days off and at least once four days off (at the end of my first trip abroad, to Costa Rica. When I got back to the states I dialyzed incenter two days in a row - I was really feeling like needed dialysis - but it was worth it. That experience also showed me/convinced me that I really did need dialysis, at the time that is something I hadn't come completely to grips with).

My advice is that if he wants to skip to plan it, talk to the unit/doc and spend the time living life. Don't skip on the spur of the moment and spend the time feeling guilty.

[Meinuk]

I'll start by admitting that I have "called in healthy" to incenter dialysis.  (I actually planned a trip, and knew that they would give me a hard time, so I called them the day of my treatment and told them that I was "stuck" out of town) - now, you shouldn't do this often, and if you are in-center and on a transplant list beware being labeled "Non-Compliant" like mentioned above  -  can be a deal breaker, but I think - Life is for Living!  And every day that technology and science keeps us alive is a gift. (Caveat - skipping a Monday treatment after sat/sunday no dialysis DEADLY IDEA) Strategize you skip if you are going to do it, and be hyper aware of your medical situation and your bloodwork/fluid.  Be careful, depression can make someone want to skip, then they should be seeking medical help.

When I was on Nxstage, I was VERY flexible with my schedule.  The most I did was well, I am not going to name a number - but I pushed it. I only did that big number twice in a year of dialysis, but it was worth it each time.  (and on the last occasion, I had an option to dialyize if I needed to).

BTW, never shorten your time on the machine if you are 3x a week incenter - that'll kill you faster than skipping once in a blue moon will. if your nephrologist advises a change, ask why?  Because in-center dialysis is actually very inefficient, you need to be very careful, as it is already set up to provide MINIMUM dialysis to a maximum number of people.

Skipping dialysis is not good for your body. But a day of freedom can be good for your soul. Don't make it a habit, realize your physical limitations, but don't make yourself a prisoner.

[boswife]

Awww,im/we're taking this all in and have learned a lot from you all.  I think the 'prisoner' thing is is a really good reason to "inform" and then skip if he REALY wants to.  I also totally agree about making sure to let them know cause *i'd* be the one feeling guilty the whole time.  I even felt horrable when he missed before and ~they~  were the ones who suggested we head to the hospital to do his dialysis as they really didnt think that it was anyones best interest to stay there.  (but we didnt go to hosp either, thus the guilt)  Anyway, thanks once again    to all who have helped me out here.

[Bub]

Besides you don't want him registered as non compliant do you?

RichardMel I am not directing this at you in anyway at all.  I always read your posts for the quiet experience and wisdom in them.  But I get tired of nurses at my center "threatening" me with the horrible consequences of being found noncompliant.  Oh yeah brother I am noncompliant.  I sometimes do things that they dont like and I tell them repeatedly I dialyize to live and not the reverse!  I know the consequences and I monitor by treatments.  And when I die they can all come to my funeral and say "I told him so".

[galvo]

Bub, you are my hero!

[RichardMEL]

I actually agree with those sentiments Bub, and down here they don't really yield the 'noncompliant" threat - I mean I know guys who are horrible with their fluid control and other stuff and still got a transplant, but I do know that at some places, specially throughout the US, that it is something they can and do use, and it *can* affect those who are waiting on a chance at a transplant.

While I understand what you're saying, and as I said I agree - the reason to not do these things that "they don't like" is because it could negatively impact on YOU. I mean let's face it, the nurses don't give a damn if you sit there drinking chocolate milk all day and overload on both K and fluid! The problem is that invariably they will have to clean up the mess in some shape or form, with the ultimate outcome not being good for you.

It's funny I had this discussion with a nurse during yesterday's treatment, as we were discussiong a particular patient who always cuts short her sessions and is bad with her fluids - indeed she had to come in for an emergency session over the weekend just to remove fluid from her - and apparently she was quite rude to the staff about it.

I *get* dialyze to live. I also get doring the things you want to do. The restrictions placed on us with diet, fluids and so on aren't there because people want to make us miserable, but to keep us in the best possible shape physically, even if we're not waiting for a transplant.

I'm in two minds myself about using this stuff as a threat though - as in "if you're naughty you might not get that transplant" - it's a difficult one, because if someone is abusing their body with extra fluids, or not following the diet, the potential outcome of a major op like that can not be as good as for someone who is in reasonable shape and following the protocol - that's fairly well known.. but should that be held over you? I honestly don't know. I tend to think of this stuff as "no pain, no gain" - as in if I don't follow the rules now and enjoy stuff, I'll pay for it down the track, one way or another. If I go through the "pain" now of restrictions and living within those, my "gain" hopefully will be a longer lasting transplant, and while I'm waiting for that, a more stable and hospital free run on dialysis. Docs and nurses want that for all of us, and I think that's one reason for the "noncompliance bat" coming out. How many times have we seen patients that you just KNOW are on the road to oblivion and you want to shake them and say "Look at what you're doing to yourself and your loved ones?!!" Of course we can't.. and you watch them doing their thing and then when bad things happen it's no comfort to think "I told him so."

This sort of reminds me of that issue brought up a few weeks back about the girl in Western Australia who had a liver transplant, lived it up and had the tx reject, and the docs werre not prepared to put her back onto the list because of that noncompliance.

A grey and moral/ethical issue.

In the end really, as with skipping dialysis, or whatever, it's up to all of us to be responsible for our decisions and what we do. I think nurses shove it down our throats for those patients who just don't *get it* and make a habit of getting into difficult situations through ignorance, or denial, rather than those of us (like Bub) who make informed decisions and are aware of potential consequcnes and willing to deal with that.

[kitkatz]

Skipping dialysis sessions can create a rise in toxins in the body. Those toxins can create havoc on the heart and other internal organs.  Be careful if he skips.

[Hemodoc]

THe data is very clear that the more dialysis you get, the longer chance of survival you have and the less you get, the less your chance of survival.  There is a huge difference in survival between 2 and 3 sessions a week.  Instead of skip, you should be able to be flexible with your treatments to meet your various activities.  So one big no vote on skipping, instead join the quotidian club and get some good dialysis.

[Zach]

THe data is very clear that the more dialysis you get, the longer chance of survival you have and the less you get, the less your chance of survival.  There is a huge difference in survival between 2 and 3 sessions a week.  Instead of skip, you should be able to be flexible with your treatments to meet your various activities.  So one big no vote on skipping, instead join the quotidian club and get some good dialysis.

 

[boswife]

I love these responses and it truly gives us the "want to's" as far as dialysis is concerned.  He's going with 'purpose' once again.. Thanks!