Weird question..... what do you do when you have to go

[Bassetmommer]

I am in training on home hemo. I still urinate A LOT. Matter of fact, I just did a 24 hour collection and filled the jug over have full. They were shocked. I haven't gotten the numbers yet for it. But here is my question: For those who are on hemodialysis, what do you do when you have to pee? My ability is only two hours and a bit. Monday, it took time to get me off the machine and my BP went soaring as I was doing the two-step from trying not to pee. One time I couldn't even make two hours and they had to take me off and put me back on. Anyone else got this issue?

[horsie63]

They do the 24 hour in home hemo? I did that in PD but not in center, they just take blood before and after treatment. Anyway, I've not had that issue, yet. I have noticed a couple of others tho that have to be unhooked and then hooked back up to go to the bathroom. One guy had to do it multiple times and I felt bad for him. I do my best to go before and then when I'm done I have to go. I still make a lot of urine but I can wait the session out.

[RhenDutchess123]

I am on PD and still pee alot too...I do my PD at night while I sleep but I usually have to get up at least once ..I feel like as my Dialysis cleans out the toxins, my kidneys get happy from not having the burden, and put all their effort onto making Urine...lots if it..lol...I have tried drinking less fluids in the evening, but don't really notice a difference...I have asked my Nurse about this and they just tell me to be glad that I still produce Urine...But I can see your dilema...at least I can easily travel to my restroom...Maybe when you start being able to do your own at home and have some privacy...you could keep a potty chair close and dump it after your Session is done...I am not sure how your Clinic is set up, but maybe they can offer a chair for you instead of unhooking you...I think its a common problem

[Sod6pnts]

They should provide urinals ... beimg male it is much easier to scoot to the chair seat edge and drop it in and go....but, from my experiences and knowing the nurses have training for such events...if its not #2, then you should be able to stay hooked up and relieve yourself...talk to them see what can be done...hope it helps..and be well.

[Bassetmommer in reply to Sod6pnts]

Well, its a LOT different for female. So I asked my nurse and this is the deal.... in center, they just stop you and then rehook you. NO issues. At home, the risk of contamination is too high so if you stop, you have to stop the treatment completely and start over with all new cartridges and lines. The in home machines are so much gentler than incenter that if you pause them, they can cause a clot. So I am back to finding something for home that I can scoot on or use a diaper. Whoop PEEEE.....

[RonZone in reply to Bassetmommer]

Get some of those Astronaut diapers

[Bassetmommer in reply to RonZone]

Astronaut diapers???/ Do they pull the golden wee out into space??

[PeaB4YouGo in reply to Bassetmommer]

en.wikipedia.org/wiki/Lisa_... That should clear things up.

[LeesKees_NJ]

Treatments for home hemo are generally shorter than in center. I have hard a time holding it in. I used to run to the ladies room before pulling my needles, there's no way I could wait until they were out and I have clotted.

Tape the line to your arm and go pee with the needles still in, you will be fine. I also started restricting my fluid intake a couple of hours prior to treatment so holding it in is more doable.

[Bassetmommer in reply to LeesKees_NJ]

yup, already do that. But last Monday, instead of me being the issue, it was the machine and it added over an half hour to fix the problems, putting me over three hours...... WAYYYYYY past my limit. I can make 2.5 and then really run.

[StillVertical]

In the beginning on hemo, I had to urinate a lot, couple times each 3.5 hours on the machine. Which is not ideal, when they disconnect you from the machine, they clear lines with saline giving you fluid they just removed. Since I was way outside my knowledge base, I continued to drink fluids like I was normal. It was especially in excess when doing the creatine tests. I too would fill up the half gallon bottle, or whatever size it is. As time went by, less urine. Using the dialyzer (renting a kidney essentially), your real kidneys will pass less urine. In time kidneys grow weaker. Basically I was told what you "could" drink a year ago, etc, will never be the same. I still urinate, just way less. I know many hemo patients, who fill up a finger thimble per week or they no longer urinate at all.

I have also had the dialysis team put up curtains/portable wall barrier in the beginning, I just went in a urine bottle while still hooked up, hanging off seat edge if he issue popped up.

These days, I don't drink much fluid, I figure I get enough from foods, etc. I am end stage.

Care and Luck,

Edit to add, my wife when we dry camped all over the country, she had a cup device, that you hold over the female area, with tight fitting. It allows, the woman to urinate just like a man, even standing up. Amazon sells a bunch of different ones.

[Bassetmommer]

oh thanks, I guess it is very different in center than at home. Home you have to stop completely and reset up. I will have to figure something out.

Does it make sense to anyone why it is a good thing that dialysis ruins whatever kidney function you have. Now would be the time to transplant me. I would have great success.

[RonZone in reply to Bassetmommer]

4 years ago, when i was told I was going to be needing dialysis in the immediate future, I started reading on this site and others concerning dialysis "restrictions". I read in several places how a person on dialysis would need to restrict their fluid intake. So I began cutting back on how much I drank. Not sure that was the best plan at that time since I was still at egfr 11, but I figured I would go ahead and wean myself off fluids as much as salt, potassium, phosphorus and protein. I lost down to 145 lbs on my "kidney disease diet". Fast forward to now. For the last several months while doing dialysis, I've been having trouble keeping my UF (Ultra Filtration) number up. That's the number indicating how much fluid was removed during dialysis. Also, the amount of urine I made greatly diminished the more solution they put in me for greater time and more exchanges per night. So at 7 exchanges per night at 2300ml of solution each exchange, it was removing a LOT of fluid, so believe it or not, I've had to greatly increase my water intake to keep my UF number even close to what the machine wants. I actually over did it in training myself not to drink so much. This last kt/v test, I barely filled the little jug over an 1/8th full. And I only urinate twice a day, once in the morning, once at night. So it's very odd how different all of our journey's are. There's no "one size fits all".

[Bassetmommer in reply to RonZone]

Well, not to brag, but I filled the Jug of Golden Wee over half way and then some. They were impressed. And I just found out I passed my kt/v with 2.5. Target is 2.1 to 2.3. And that was after not having good treatments. I do cut back on the days I have dialysis before I go. Then when I get home, I guzzle so I do not get cramps. The days they took off fluid, which was only 4 units, which I am not sure what that correlates to in cc or ml, and I did not even get through the end before my leg and foot curled right up. They immediately added 200cc but that did nothing and at night my legs were doing the hoochee choochee with cramps. It is like they become possessed. So, they stopped taking any fluid off. Last week, I noticed my ankles were swollen with mild edema. Then on Friday, I was just beginning to get a cramp and I was done so I let it go. Then I had it at night instead. No fluid removed but just normal dialysis. I said let's wait and see if they get any better and sure enough, after this weekend of lots of water, and moving more, and spending more time on the porcelain throne, they are back to no edema. With dialysis, coming and going and then doing my workload at the computer in the morning, I have been sitting too much and no pool. I hope after Thanksgiving to go back to my water aerobics.

Yes, we are all different which is why it is so important for folks like us to share our journeys so newbies can get a real picture and plan and adjust instead of going through a trauma phase. Things better for you now I hope?

[RonZone in reply to Bassetmommer]

When do you think you will be taking hemo "home"?