Not Your Typical Dialysis Patient

[monsterman]

Well for weeks I was struggling with Light Headness, fatigue and dizziness.. I have many Diabetic Complications and one of them being Gastroperesis.. Well to make a long story short after doing a lot of reading in the library, on line and in books I came to the conclusion that I needed to get fluid while at Dialysis and not have any flluid taken off.

I get IDPN while getting Dialysis 3 times a week. They cant set the machines as you all know to "NOT" take off some amount but they arent setting the machine to take any extra off now. Before we would take off a little each treatment. But with my Gastroperesis I run constantly to the bathroom. So I am already losing plenty of fluid, liquid between those visit. I can leave weighing 53.0 "highest weight so far" only to come back 2 days later and have lost 4+ pounds. For example, last Friday I left weighing 53.0 came in on Monday weighing 47.9 so thats a pretty good bit of fluid loss.

I am not retaining any fluid that is for sure. I still can go to the bathroom as well. Not sure if its true or not or depends on the patient but a lot of people have told me that we stop urinating, not in my case at least not yet.
So anyway I have now been getting 2-3 bags of IV Fluid per treatment while also getting the IDPN and I can finally say I feel a lot better. By the day before going back for another treatment I can feel myself starting to feel tired and a little crappy. I hope to at least play catch up on my fluid loss and maybe some of it will start to stick with me a little longer then a day or so..

And getting fluid while at Dialysis is a lot nicer and quicker then going to the ER a few times a week to just get some fluid!!

[okarol]

Jenna never did stop urinating, even after 3 years on dialysis (it reduced a little the 3rd year.) The techs could over ride the default so NO fluid was taken off. They had to get the head nurse to sign off on it and it was inconvenient for them, so sometimes they'd just ignore our request. Jenna would be loopy afterward, headache, and had to take Gatorade and sleep for 10 hours. So we kept on top of the techs to set the machine especially for her .

[monsterman]

I am on top of things when it comes to what they do to me while at Dialysis. I can pretty much tell you anything and everything and I think I could handle doing it all maybe just not pushing all the right buttons on the machine at least not yet but I am getting there quick!

I came in today with a weight of 48.7 I left on Monday at 51.6 so you can see I lost a lot of fluid. But I left today with a weight of 50.2 so I am happy with that, its not 53.0 but I will try to get to that on Friday.. Hopefully I wont loose that much in the next day and a half..

[aharris2]

Good for you, Monsterman, sounds like you are doing a good job of taking charge - especially difficult when you are not the typical dialysis patient since the nurses and techs definitely don't like to think outside of the box.

A question for you, since you lose so much fluid between sessions (to the point that you're dehydrated), are you drinking to make up for it or does the gastroparesis prevent it?

Alene

[monsterman]

I drink tons of fluids, I drink around 8+ cups or 8oz glasses of water a day, I toss in Gatorade and sometime Pedyalite if I am really feeling bad. The Gastropersis causes me to loose so much fluid its just so hard to keep it in. Even just sticking to good old water can actually just run right through me.I have found that if I get 3-4 bags of IV fluid during Dialysis or take a trip to the ER I get topped off and feel great and can go for days before I get to feeling bad again.

Getting the IDPN and IV Fluids during Dialysis has made a HUGE difference for me over the course of the past few weeks. I just now have to get ALL of the techs and nurses trained as to what "I" need and Dont Need. They are only trained to do things by the book and I realize that so I am being as patient as I can with all of them at the center and for the most part things are working out well.
Its in my chart to get fluid I usually can make the that call for the most part, they were and have been a little concerend because when getting shots of the IV Fluid my bloood pressure upper/lower numbers jump up and so does my heart rate but I am slowly teaching them that it will come back down to normal in about 10-15 minutes. I was asking one of the Nurses today what causes that and its the IV Fluid making my heart rate go up I guess its what they put in it..

[Lucinda]

I am with you monsterman.  I take off no fluid at all during treatment and give myself 1-2 bags of saline.  I also drink all the time.  If I don't get enough fluid I get a migraine and feel disgusting but when I give myself the fluid I feel much better when I come off.  I do hemo at home so I can calibrate my own machines not to take any fluid off.  I have blood pressure problems though so I have had to increase my blood pressure meds but I agree with you, giving the saline during treatment and more towards the end certainly makes life more bearable at the end of dialysis.  NO hangover.