Dehydration Headaches and Dialysis: Frustrations with Nephrologists and Nurses

When I was on hemo dialysis, my nurses knew I was still urinating and this should also be reflected with your weigh ins, so they didn’t pull but what they put in for treatment. I would definitely talk with your dr. Though, I know when my regular nurses were out and the substitute would try and pull because they don’t listen my blood pressure would instantly start dropping and my heart rate increase… so they learned fast !

I was the EXACT same way on dialysis! They were pulling fluid when I didn't have any to pull. I started dialysis October 2019 and I was currently in a flare up and really sick and skinny. Once I started gaining weight, they were pulling it and it literally felt like I was going to DIE each treatment. I was so depressed, and just had no energy, couldn't walk or stand. FINALLY they started running me even and not pulling weight. I don't know of anyone else that had crohns and kidney diease at my treatment center so we are definitely a rare breed. The doctor has to approve it, but tell them to RUN YOU EVEN!!! That way they just clean your blood, and not take off fluids. I just had a kidney transplant almost 2 months ago now, Dec 23, 2021.

I do know most dialysis machines have to pull some fluid at least while you're there to be able to filter out some of the other things they're trying to pull out of the blood, but also most centers rely mostly on whether or not you experience any cramping while on the machine to say whether or not they need to adjust amount of fluid pulled. I've been on dialysis myself since 2015 and I do know for a fact, that unfortunately, headaches (incl. ones attributed to feeling dehydrated) are just one of those things that can and fo happen to everyone on dialysis here and there. I personally use oxygen therapy as well when I'm there on the machine (2L per nasal cannula) and it does wonders for my headaches. I think the whole 'dialysis process' just wears my body out in general and the oxygen I use there helps keep a lot of the headaches either at bay or at least not as painful as they otherwise would be. I also do know of other people that have found this advice to help them as well. Again, if you are cramping during treatment as well as the headaches then that's usually the universal sign to get most centers to pull less fluid off of you.

It sounds frustrating, maybe try arranging a joint meeting with your IBD doctor and your nephrologist to work this out?