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Author Topic: Tempting Death - Skipping dialysis  (Read 14344 times)
CW
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« on: February 11, 2008, 10:35:16 PM »

I was wondering

I wanted to know if any of you skip or have ever skipped dialysis? I am not proud of it but I have skipped up to 3 weeks of in center hemo at a time. I never skip that much now but occasionally I skip a session. Have any of you done this or contimplated doing this?

Thanks for reading
CW
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« Reply #1 on: February 12, 2008, 02:27:26 AM »

I have never, and would never skip a session unless I was very sick.  At my unit, they can kick  you out after you miss 3 sessions.
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« Reply #2 on: February 12, 2008, 04:39:20 AM »

No, I would not skip a session. It would just add to fluid buildup and more they would have to take off making me feel lousy. This missing a session would be a set back for me.
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« Reply #3 on: February 12, 2008, 06:17:45 AM »

I have been on dialysis for nine years and I am very proud to say I have never missed or skipped a session.  I have had to reschedule my life around it or rescheduled dialysis to fit my life, but never missed a session!
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« Reply #4 on: February 12, 2008, 06:42:49 AM »

I have missed exchanges but im on CAPD so it doesnt seem to make a difference. The most i have skipped though is only one in a day ! I wouldnt skip a few days worth of exchanges.
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« Reply #5 on: February 12, 2008, 07:43:43 AM »

I missed a few sessions with physician approval and those involved rescheduling others to make previous or future sessions closer to the times of the ones missed.  I also had to terminate early in a couple of cases where a family member had been injured and I needed to meet that person at the hospital.  Another time there was a wide area blackout and with no backup power at the unit the session was essentially over.
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« Reply #6 on: February 12, 2008, 11:34:24 AM »

The only time I've skipped it was when my access clotted - but that wasn't by choice!  With home hemo, it's not really skipping, it's just rearranging the schedule.  I still get the same amount of dialysis in a week - just not on the days I would have done it according to my regular schedule.  I never skipped when I was in-center.  I hate the feeling of fluid overload, so there was never any temptation to skip it.
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« Reply #7 on: February 12, 2008, 12:16:34 PM »

My nephro refused to answer when I asked him how long someone could go without dialysis. I was wondering about, maybe, going on a week's cruise.   Once I rescheduled my dialysis when I was taking a trip to St.Martin and had to fly out Friday morning.  I am MTF, but I took my Friday on Thursday and my next dialysis was to be Monday.  Well, one of the nurses made a big stink about it.  the unit supervisor had said that I could,  but then she wasn't there the Thursday and the nurse who put me on was shocked.   The ones on duty that day made me feel as if i was committing suicide.  The result was that I was extremely careful about what I took in that 'long' weekend, and I ended up with less fluid than usual!!
But I have never missed a session in my 2 1/2 years and I don't intend to!
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« Reply #8 on: February 12, 2008, 02:46:52 PM »

CW, BEFORE I was classified as needing chronic hemodialysis, BEFORE I was diagnosed with having endstage renal failure, I was allowed to go for three weeks at a time between dialysis sessions for a short while, but my function quickly deteriorated and then I had to follow the usual dialysis schedule of three treatments a week.  If you can still go for three weeks without dialysis, then you don't really have chronic, hemodialysis-dependent, endstage renal failure, but just renal impairment.  Normally a truly dialysis-dependent patient would die after anytime from 10 days to four weeks without dialysis, and would feel profoundly ill after just four or five days without dialysis.

For those who have reached the degree of endstage renal failure where their urine output is minimal or absent, their desire to skip dialysis sessions is about as strong as a cow's wish not to be milked when its udders are full to the bursting point.  I even felt distinctly unwell during my longest gap in dialysis sessions from Saturday to Tuesday, and I the only way I could minimize the unpleasant symptoms of fluid gain and nausea was to skip eating on Mondays.
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« Reply #9 on: February 12, 2008, 04:18:21 PM »

missed  my  second  ever  dialysis  session  as  my  fistula  arm  turned  purple  on  commencind  dialysis,never  missed  after  that  cause i'm  too  afraid  of  feeling  worse  than  i already  do  somedays.
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« Reply #10 on: February 12, 2008, 04:21:21 PM »

I was wondering about, maybe, going on a week's cruise.   

There is no way thats gonna happen unless you intend to debark the ship in a box.  Dialysis at sea, no problem.  A week without, the penultimate problem.
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« Reply #11 on: February 12, 2008, 04:42:49 PM »

An enlarged heart or uncontrolled blood pressure often results from missed dialysis treatments and can also jeopardize a person's chance for transplantation.
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« Reply #12 on: February 12, 2008, 04:55:56 PM »

An enlarged heart or uncontrolled blood pressure often results from missed dialysis treatments and can also jeopardize a person's chance for transplantation.

Simply skipping a treatment jeopardizes a person's chance for transplantation.  Skipping treatments = Non compliant = not eligible for transplantation.   :urcrazy;
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« Reply #13 on: February 12, 2008, 05:09:31 PM »

I was on in-center for about three months prior to my second transplant (TThSat), and like one or two others, had to rearrange treatments one time to go visit my parents for a long weekend. I don't remember feeling particularly ill or even being extra careful about my diet, but I think I had it arranged that I would go in on Thursday as usual, Friday to make up for Saturday, then start my usual schedule again on Tuesday, so maybe the two days in a row helped.

This time around, I was on PD, and like Kickstart, when I was doing CAPD, I might have skipped one treatment once in awhile. Once I started on CCPD, I would never consider skipping, because that would have been missing an entire day (and there are no days off to make it up, like with home hemo!).
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« Reply #14 on: February 12, 2008, 06:40:19 PM »

Well I am surprised I am the only one so far but I had to address some of the responses

If you can still go for three weeks without dialysis, then you don't really have chronic, hemodialysis-dependent, endstage renal failure, but just renal impairment.
Stauffenberg - My renal function at the time I started was under 5% and I stopped urinating soon after. When I embarked on my three week stretch I was years into dialysis treatment. So no renal impairment but full blown end stage renal disease. I did feel very ill and I knew I would but I hate dialysis and the combination of that and not feeling that there would be serious consequences made me comfortable with the decision. Medical science is not an exact one it is simply people making guesses based on what has been documented in the past. That is what is so mysterious about the human body you cannot be sure what a particular one can take until you test its limits.

An enlarged heart or uncontrolled blood pressure often results from missed dialysis treatments and can also jeopardize a person's chance for transplantation.

Simply skipping a treatment jeopardizes a person's chance for transplantation. Skipping treatments = Non compliant = not eligible for transplantation. :urcrazy;
GJ and okarol - I have been told by my clinic staff and TX team that this is true and I believe it to be. However I did receive a TX (it took 6 years + but it happend) despite the fact that the three week excursion I took was not my only indiscretion, far from it. A combination of depression, abusive staff, hating dialysis and a lack of caring made me willing to make this decision. I took my binders I took my meds I watched my diet and I limited my fluid  intake. I felt like hell and I was glad to get to dialysis when I returned as I knew it would stop some of my suffering but I did it again. I think sometimes maybe I really was secretly seeking death to end the lifelong suffering ESRD causes.

I can say that every time I missed a session it was my choice no one forced me to but when I thought of the complaints and nasty attitudes I would get if I was late (even though I readily accepted a shorter treatment - and I was last shift) it made me not want to go, whenI thought of the cramps the low blood pressure the being stuck in a chair for 3 1/2 hrs I did not want to go, when I thought of the nasty attitudes the ever alarming machines the lazy staff and the blood stained floor I did not want to go.
I finally thought about my daughter and what her life would be without me and I finally wanted to go. Even though I am too tired to play even though she is embarrassed of my scars even though she has a sick dad and she deserves better I am all she has and I want to live  :yahoo; . I love her and she is my ONLY reason for hanging on and I would choose to stop if it were not for her but I do cheer all those who endure for themselves and for life. You are stronger than I will ever be.

CW
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20 years navigating ESRD
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To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
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« Reply #15 on: February 12, 2008, 06:50:46 PM »

Marvin's been on hemo dialysis (first in-center, then home hemo) for 13 years.  This week, we will celebrate (yes, I said celebrate) his 1,600th dialysis treatment.  He did have a three-year break in the middle of all of this when he got a transplant.  Marvin has never skipped a treatment in all these years.  Marvin says he plans to never skip a treatment no matter how much longer he's on it -- dialysis is what's keeping him alive and a skipped treatment may mean one less day of life down the road.
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« Reply #16 on: February 12, 2008, 07:18:37 PM »

At least you are honest CW. I give you credit for thinking of your daughter and not just yourself. I mean this in a good way as a compliment.  :thumbup;
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CW
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« Reply #17 on: February 12, 2008, 08:32:31 PM »

At least you are honest CW. I give you credit for thinking of your daughter and not just yourself. I mean this in a good way as a compliment. :thumbup;
Painfully honest - Thanks Sluff

I just realized that this discussion is similar to the 'not starting dialysis' discussion in that it deals with personal medical decisions based on one's experience.

And thank you all for your input it is greatly appreciated :2thumbsup;
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20 years navigating ESRD
Had a transplant but it rejected

To all of my kidney brothers and sisters who have left too soon -
Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.  I miss you like hell.  ~Edna St Vincent Millay
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« Reply #18 on: February 14, 2008, 04:47:39 AM »

i have chosen skip twice in 2 years. once when there was too much snow to go anywhere and once when i needed to care for my grandkids and the center near my daughter's was full and couldn't take me. i was doing really well at the time and there didn't seem to be any ill effects. as poorly as i have been doing this year i wouldn't skip. during the first year i missed a week when my access clotted, the doctor wasn't happy at all, cause i had to get another catheter but i really didn't feel all that bad.
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« Reply #19 on: February 14, 2008, 07:39:13 AM »

My husband has been on dialysis for 11 years and has never missed a treatment.  I really can understand though someone needing a break especially if they are depressed. I know that if I wasn't around hubby would not do any more dialysis.  He would be too depressed to want to live. He has problems with depression sometimes anyway. 
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« Reply #20 on: February 14, 2008, 08:51:13 AM »

I'm on PD and I have missed a couple of treatments like if I
was out of town for a night.  Right now I would not or f I did I
would do some manual exchanges to make up fo it the next day.
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« Reply #21 on: February 14, 2008, 11:54:59 AM »

To be truthful, I missed 9 days last year when I had a problem with my access and my NxStage machine, and was having difficulties transitioning back to in-center due to insurance problems. I'm one of those quirky people, though, because I feel much better off of dialysis. I tend to feel lighter and have much more energy.  During those 9 days, I did not have problems with fluid gain and my blood pressure was about the same. My labs did not budge much either.  Last month, I took off 4 days while traveling, and that didn't seem to matter much, either.

I've gotten a lot worse on dialysis over the last few months, so I don't think that I would be able to take off  9 days again. and hey, I'm not recommending that people miss sessions. YMMV...
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« Reply #22 on: February 16, 2008, 11:27:14 AM »

I use a baxter cycler 5 nights a week and stay off dialysis Friday and Saturday nights. Last summer I went for a full week without dialysis and didn't feel any the worse for it. Treasure do you have polycysic kidney disease by any chance. That's what I have and it sounds like you don't have the usual problems associated with kidney failure just as I don't. I'm pretty sure I could stay off dialysis indefinitely. I have discussed this many times with my renal doc but as far as she is concerned my blood tests tick all the boxes so dialysis is the only option.

I'm sorry to all on IHD who read these posts I make about denial of my condition you must be sick of me banging on about it. but I do need this question looking into properly and nobody at my clinic seems to be listening.

The big question that I have is this: There are two types of cystic conditions which affect the kidneys. Simple cysts are small in number and do not affect kidney function. On the other hand polycystic kidney disease means hundreds or thousands of cysts which eventually cause kidney failure. Is the defining factor just a difference in numbers or are simple cysts biologically different? If so, what if simple cysts become high in number, is it possible that because  they are biologically less harmful they cause less kidney failure than polycystic cysts and could therefore explain why despite having a GFR of only 7%, I have full urine output (almost 3 litres per 24 hours) and a Haemoglobin level of 15.2?

Also PKD normally runs in families but no-one in my family has ever been on dialysis. I do know however that my father had large simple kidney cysts which were revealed in a kidney scan he had as part of a clinical investigation into an unrelated condition, and his sister who is still alive has them. Nether of them had any kidney failure symptoms.

I want to find if any research has been done in this area but I don't know how to pinpoint a websight that may tell me. Stauphenberg I need your wide ranging knowledge on this.
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Ken
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« Reply #23 on: February 18, 2008, 05:55:57 PM »

I have only been on dialysis since October and have had to miss 4 treatments.  :o
Not by choice but because I was sick and puking from abdominal blockages.  I was able to reschedule the first time I had to miss since I felt okay the next day.  The 2nd time I ended up in the hospital so had dialysis while in there.  The other 2 times, I was still too sick the next day to make it in to the center. 

Thank goodness everyone at my center knows I don't miss unless I literally am too sick to make it in.  Also my husband calls to tell them I'll be missing.
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