Skipping dialysis - fluid intake

[angieskidney]

I could never skip a day of dialysis... I drink too much in between. It is something ... I can keep my phosphate perfect (but it is VERY hard .. I have to be good with my binders and not touch any "no no foods" .. and basically not over eat ... and yet .. I can't control my drinking Is that bad?


How many of you skip dialysis once in awhile? I have been hearing about people doing this. The ones who do this .. do you still .. uh .. void urine at all??

[Joe Paul]

Yes Angie, I still urinate, I don't think I would have missed if I didn't.

[angieskidney]

Yes Angie, I still urinate, I don't think I would have missed if I didn't.

Ah okay. Well I thought you weren't the only one who missed a day of dialysis though. I am not sure. What is the worst that happens by skipping?

[Joe Paul]

Missing no doubt will bring the toxin levels, along with everything else, up thru the roof. When I get my blood work done,(next Wed.), I'll be sure to post the results of this week, if anyone is interested

[livecam]

I skipped a few times and once very foolishly.  In the beginning it was hard to adjust to dialysis from a regular life just before it.  About 3 months after starting I decided that I was going to Hawaii for a week and if careful everything would be ok.  My docs didn't recommend it but I'm a stubborn guy and they couldn't stop me so off we went.  After a few days I started feeling pretty lousy and went in to my HMOs facility in Honolulu practically begging for a run.  They wouldn't do it and have probably seen many other patients who tried what I did.  My only recourse was to call the airline and beat feet back to my home unit.  I never wanted dialysis as much as on the days leading up to that next treatment.  I was like a vampire craving his next meal. Six days elapsed between treatments and things were pretty uncool.  It was a really stupid thing to do looking back but it taught me what my limits were very graphically. Another time I stretched treatments out to accommodate a short 4 day cruise with a physician ok.  By the third day without treatment I was starting to feel it and spent that day just watching TV in the cabin.  So you can get away with maybe skipping a day if you can arrange a run the day after. The longer you go the worse you'll feel.

[angieskidney]

Thank you. That is exactly what I wanted to hear! That is very informative.

[Bajanne]

Now this is something I really wanted to find out about as well.  Many times I asked my doctor or nurse how long I could go without dialysis, and they never even wanted to entertain the thought.  For instance I would like to have a long weekend somewhere, since this is the only time I can travel without hassle.  I was thinking about leaving out the Friday treatment or Monday.  But this is telling me I had better leave it alone. 

[Panda_9]

If you are on conventional hemo then even skipping one treatment is really really not a good thing to do. As it is you are not getting enough dialysis. Some people may be able to get away with it, and feel a bit ill, where as others may not. I went 3 days without dialysis when I first started hemo because someone mucked up the patient diary, and as I was new to hemo, I wasnt aware that 3 days was bad. Anyhow, when I got to dialysis after that, my potassium was over 6. Potassium is pretty much the main immediate threat with missing dialysis.

With nocturnal it is a bit different. You can skip a night, well most people can, I cant  Problems do occur sometimes when you are setting up and going on and when its night time theres not much you can do, so you just leave it til the next night. I have done it before, but I dont feel safe. Now if for some reason I cant dialyse, I go to ER and have a blood test to see if I can wait til tommorow. This happened the other night and my K was 5.8, so lucky I got it checked as they kept me in, gave me some resonium, and dialysed me the next day. I just dont think its worth the risk.

[kevno]

I have skipped dialysis a couple of times. On the Saturday, so that Thursday till Tuesday with no dialysis. I suppose it is all down to if you have an idea what not to eat or drink. I did feel very tired and a headache. I could tell I was ready for dialysis. Never overloaded, always kept my fluid intake very low. So never had the out of breath, swollen ankles and so on, from being overloaded. With not having dialysis. There again some patients are overload with dialysis. There is one patient who skips dialysis a lot. He never seems to get any ill affects from it 

[goofynina]

With as much fluid as i take in, i dont dare skip a night or i would be floating into a dialysis unit real quick  (and i am on PD mind you) lol, 

[Panda_9]

Even if you watch what you eat and drink it is still dangerous to skip sessions, especially conventional Dx. I wouldnt do it unless for some reason it was advised.

[deej]

A year ago, after having been on dialysis for 6 months, my mother was at death´s door. So I flew back to the States from Brazil. I couldn´t get dialysis in the States because the unit said they needed to have my paperwork 10 days before I arrived. (I had faxed them the papers two days before I left Brazil and had called them twice to confirm the dialysis -  which they confirmed!) I tried to explain to them that it was an emergency visit but they still wouldn´t help me. So I spent 2 and a half weeks without dialysis and almost died. On the plane coming  back to Brazil, the flight attendants had to take emergency measures with me and then had an ambulance waiting at the airport in Sao Paulo that took me straight to the hospital (siren blaring and lights flashing!). I was hospitalized for almost two weeks before I was "normal" again. I certainly learned my lesson. Never again without dialysis.

P.S. My mom didn´t pass away. She´s 93 and still with us - in better health than I am  .

[Bajanne]

Now that is what I call AN EXPERIENCE!  I am so glad you shared that with us.  It definitely is a lesson concerning doing without dialysis.     My dad always said that you should learn from others' negative experiences and not have to have your own.  His big quote was "Experience is a school where fools are taught."  However, your experience is making me say to myself 'maybe I could make it for a week, or a week and a half...'

[livecam]

Actually there is a way you could have gotten dialysis.  While the unit said no, if you had gone to a public emergency room they would have been compelled to treat you and that includes dialysis.  It is not something that I would recommend but if it is a matter of life and death it would have been done.  When I took the trip that I mentioned earlier I was new to dialysis and gambling with the outcome.  I had the option to get back to my home unit and be treated there which is what happened.  It is amazing that you lasted that long.  I've heard quotes of 10-14 days being about it for those who voluntarily decide to stop dialysis.

[deej]

Actually, I have another adventure to share about skipping dialysis. Prior to being put on dialysis, I had bought a plane ticket for a vacation to Easter Island. Then I got stuck on dialysis. I had always dreamed about Easter Island and was determined to go anyway. I had been on dialysis for two months and my doctors were all against the trip but I packed my bag and off I went to Easter Island; where they have one precarious hospital, no dialysis machines and the closest help would be a five hour plane trip back to Santiago, Chile. I spent one glorious week on the island and when I came back to Brazil, I had gained only 300 grams, my potassium and phosphates were all great and I became the "miracle" of my dialysis unit  .  But I was very, very lucky. I am sure that God heard all the prayers that my friends were sending up asking Him to watch over me.  Skipping dialysis is never a good thing to do, even though we´d all like to never go again.

[Panda_9]

One persons luck could be another persons nightmare. When I was on conventional I couldnt even last a 2 day break without my potassium going over 5 unless I just didnt eat. So I dont think Id last more than 3 days if I was on conventional HD. Where as on nocturnal I can safely skip one night and have skipped 2 nights and been fine, but felt like shit from it. I dont skip treatments anymore without going to ER for a blood test first. You may sit there for a while waiting, but its better than not doing it and getting very ill or having a heart attack and dying.

[kevno]

I have only ever skipped two full dialysis days. But, I know I should not do this, I am always coming off the machine early. From just 10 minutes to an hour. When I was in the main room. For some reason I just could not stand being around the other patients on the machines. So I was coming off over 2 hours early. Signed books full of those papers to say if anything happened to me it was not the hospitals fault.

Just too many issues with Haemo for me I hate it with every ounce of fibre in my body. Just can not come to terms with haemo. Been back on it for 6 years now. Been seeing a Professor to try to help me. But still seeing her after 6 years. Wrote two lever arch files about my past. Now PD was so different for me, no trouble at all, I can say 12 years on CAPD never missed an exchange. Felt Great on CAPD, feel crap on haemo.

[Rerun]

I hope when I decide to not do dialysis anymore, that they will help me with drugs and ultrafiltration.  That is where they hook you up and only take off fluid, no toxins.  I just want it to be painless and go to sleep.

[kevno]

I do not think I could ever stop doing haemodialysis. It is just so hard for me, to get my head around that I am back on haemo. When I went back on CAPD a Doctor said I would never have to go on haemo. How wrong he was Plus even after 6 years back on haemo, I am still haunted with the memories from when I was a child on haemodialysis. That why in 1980 I was taken off haemo and put on CAPD. The third child in England to go on CAPD. Thats why I waited one year longer with a Transplant that was failing to get on CAPD and not haemo, which I could have gone on that year earlier. In the end I had a 24 hour nose bleed and the protein from my own blood finished the Transplanted Kidney off.

[Mom3]

We were told that one of the things a transplant evaluator looks at is how regular you are in attending dialysis, being on time etc. 

My son's old clinic used to dialyze him a day early so he could have a long weekend if he wanted to travel. Anyone else's clinic recommend that? I was never very comfortable with the practice.

Mom 3

[Rerun]

There isn't a "day early".  There is two days in a row, which would help.  So, If I'm usually Tuesday, Thursday, Saturday, and I want a long weekend, I could go Thursday, Friday, Tuesday.......

Like I have a wedding in South Lake Tahoe on Saturday, September 2, at 5:00 PM.  I usually dialyze on Saturday form 2 - 5.
So, I could dialyze early Saturday Morning or Friday evening and still make the wedding and have a nice long weekend.

[Panda_9]

We were told that one of the things a transplant evaluator looks at is how regular you are in attending dialysis, being on time etc. 

My son's old clinic used to dialyze him a day early so he could have a long weekend if he wanted to travel. Anyone else's clinic recommend that? I was never very comfortable with the practice.

Mom 3

Do you mean he had 3 days off?? I wouldnt be comfortable with that either! When I first went on HD I had 3 days off because of a mix up with the diary, and it wasnt until I showed up 3 days later that my nurse said OMG, and I didnt know anything as I was only new. From memory my potassium was up over 6 and that was the first I knew about potassium and heart attacks and that I could of died. Was one of the biggest reality checks Ive had in my life.

I do not think I could ever stop doing haemodialysis. It is just so hard for me, to get my head around that I am back on haemo. When I went back on CAPD a Doctor said I would never have to go on haemo. How wrong he was Plus even after 6 years back on haemo, I am still haunted with the memories from when I was a child on haemodialysis. That why in 1980 I was taken off haemo and put on CAPD. The third child in England to go on CAPD. Thats why I waited one year longer with a Transplant that was failing to get on CAPD and not haemo, which I could have gone on that year earlier. In the end I had a 24 hour nose bleed and the protein from my own blood finished the Transplanted Kidney off.

Kevno your the first person I can recall that also had a big nose bleed. Mine happened before I was on dialysis and before I knew about my kidneys failing. It bled for nearly 3 hours with massive clots coming out. And in those days if your nose bled you held your head back, which we now know only makes it worse! It wasnt until I got to the ER that they got me to hold my head forward, and eventually the bleeding stopped. I dont even think they took my blood pressure, and if they did it must of been back to normal after the bleed. They did no investigations and sent me home 

[kevno]

How you explained it is spot on. Massive clots coming from the back of the mouth. Some must have been over two feet long, YUK Got sent to A&E waited nearly 4 hours to see a Doctor. Then all they did was pack the nose. It took just over 24hours to stop bleeding. Then I fitted and ended up having Haemo once. Then was put on CAPD.

[livecam]

They are looking at total compliance.  Dialysis attendance, fluid gains, keeping medical appointments, general health, health history, test results etc. are all considered.  The strangest thing about getting on the list and when you get called is that it is such a mysterious black hole.  Basically you have to do everything right but you never know when the time will come.  Too bad the system doesn't include some sharing with the prospective recipient so that they would have some idea of where they are at and what they could do to improve their chances.

[angieskidney]

Ya.. almost EVERYONE asks me, "Where are you on the list?" Does everyone get that?