Argh...PD issues!!! Help!!

[vivalaslele]

Hey guys. Ok so I just started using a Baxter Home Choice Pro cycler at home a few weeks ago. Im having serious problems with the fluid volume. Im a thinner person and I start to get really really uncomfortable at just 1000 ml. At 1500 I feel like my abdomen is going to explode and I look like Im 6 months pregnant. I switched to PD from In clinic hemo (with a catheter) because I started getting unexplainable migraines and vomiting an hour or two into my 4 hour treatments. This PD stuff was supposed to make me more independant and be easier on my body and be so great and all this stuff, but im miserable. Now instead of being hooked up to a machine 4 hours 3x a week, its 10 hours a day every damn day!! And I hate the way I look, none of my clothes even fit me. Its a good thing i live in florida where the weather doesnt get too cold and i can wear little dresses most of the time. Does anyone have any advice on how to cope with the fluid issue?? i was hoping i could talk my dr. into changing my program to like 700 ml fills and 1 hour dwell times like 10x a night. would that work, give me enough dialysis? Does anyone go dry during the day? I wish my doc would let me do that, some tech told me that no one ever goes dry, but i dont know if i believe that. HELP!!

[looneytunes]

Viv...my hubby was on the Home Choice Pro cycler at night and was dry during the day.  But he was filling with 2500 ml 5 x throughout the night cycle with a final drain in the morning.  It doesn't sound like that is really an option for you due to your small frame.  It's my understanding that the dwell time is pretty important in removing toxins so 1 hour dwell time may not be enough to do you much good.  There are a lot of folks on this site that are very knowledgeable about PD so hopefully one will drop in on this thread and give you more useful info. 

[chook]

G'day Viv. I'm just 5ft and about 8 1/2 stone - was much lighter before commencing PD. I am dry during the day except for 100mls that I leave in to stop the catheter causing discomfit. I do 4 x 1500ml fills a night with about a two hour dwell - averages out at about 1:50. I now have a tummy for the first time in years and it seems HUGE to me. I have gone up a dress size as my appetite was almost nonexistent pre-dialysis.
I can imagine how the larger fills would be feeling and you have my sympathy. I don't think you should feeling so uncomfortable and you need to be asking what can be done to help this.
All the best. Hope this helps somehow.

[ardyce]

Vivalslele,

Have the PD nurse do a PET test on you to see if you are a low transporter or high transporter. 
Low transporter your peritoneum moves toxins slowly across your peritoneum, requires a long dwell time.
High transporter your peritoneum moves toxins fast across your peritoneum, requires a short dwell time.

My dwell time is 1 hour and fifty minutes with 4 exchanges a night, 9 total hours a night.

Believe me when I first started PD I had trouble with the amount of liquid too.  I would start with 1000ml and do that for a week or two and than I would increase it by 100ml and I gradually work up the fluid amount.  I am now up to filling with 2000ml.  At first I did not believe I could ever get that much liquid in me.  It is true the more liquid you can carry the better your toxin clearance is.

I agree doing PD  you can not keep your shapely figure but it is better than doing Hemo in-clinic.

I love the car in your avatar!

[vivalaslele]

thanks everyone, i appreciate the feedback. I have talked to my nurse about the PET test and we will be scheduling it shortly. He also agreed that we could make some adjustments in my volume and dwell time if my peritoneum is transporting well. But really, it sounds like im just gonna have to deal with it if I want to stay on PD. Im not sure that I do. This isnt a whole lot better than Hemo, like I said Im pretty much miserable. Im gonna do what I have to do to keep my neph dr. happy so i can get referred for transplant. Wish me luck.

Yeah, isnt that car awesome!! Its a 1951 Buick deluxe named Ms. Caroline. She belongs to my ex-fiance. We spent a lot of Sunday afternoons driving her. We also took her to a lot of car shows and car club events in our area.

Again, thanks for the feedback. Im feeling pretty bummed about PD right now.

[M3Riddler]

Hey guys. Ok so I just started using a Baxter Home Choice Pro cycler at home a few weeks ago. Im having serious problems with the fluid volume. Im a thinner person and I start to get really really uncomfortable at just 1000 ml. At 1500 I feel like my abdomen is going to explode and I look like Im 6 months pregnant. I switched to PD from In clinic hemo (with a catheter) because I started getting unexplainable migraines and vomiting an hour or two into my 4 hour treatments. This PD stuff was supposed to make me more independant and be easier on my body and be so great and all this stuff, but im miserable. Now instead of being hooked up to a machine 4 hours 3x a week, its 10 hours a day every damn day!! And I hate the way I look, none of my clothes even fit me. Its a good thing i live in florida where the weather doesnt get too cold and i can wear little dresses most of the time. Does anyone have any advice on how to cope with the fluid issue?? i was hoping i could talk my dr. into changing my program to like 700 ml fills and 1 hour dwell times like 10x a night. would that work, give me enough dialysis? Does anyone go dry during the day? I wish my doc would let me do that, some tech told me that no one ever goes dry, but i dont know if i believe that. HELP!!

Did your nephrologist ever explain why you were feeling miserable with vomiting and migranes towards the end of your treatment? There is a simple reason why.
I am willing to bet that you were running at a blood flow between 450 and 600 removing more than 3L per treatment. Im also willing to bet that towards the end of your treatment, when you started experience headache etc, they would give you a bolus of saline.
This is very common and can be explained very easitly.  All of your symtoms were more than likely the result of running too high of a blood flow and pulling too much fluid off too fast. When you pull too much fluid off, then this stresses your vessels and your heart. Your blood can only hold a certain amount of fluid ( 400cc's give or take depending on the person) When you are in center, they remove entirely too much fluid per hour. Reason is, that they only have approx 4 hours for you as they need to get the next person in the chair.
It takes the body approx 1 hour for the fluid to move from one compartment to the other....tissues- cells - bloodstream. When they remove more fluid than the bloodstream can hold, this is partly why you are feeling horrible.
When you get this, im also willing to bet they load you full of saline, thus, undoing the removed fluid they pulled off before.
The headache can be from BUN. When you removed too much BUN off, then the body again tried to equilize itself out and the the BUN rushes towards the head/brain, thus giving you a headache. This is normally called a BUN Headache.
This is called Dialysis Disequilibrium Syndrom. You can read about this here:  Dialysis Disequilbrium Syndrom

To sum it up, your nephrologist should have been able to recognize this and adjust the settings accordingly.
Perhaps there is a different reason and more too the story, but the above is very common with in-center dialysis.

///M3R

[*kana*]

I do 3000 per night and when they were trying to get the tidal settings correct they reversed the settings and I only drained 250 and then refilled another 3000!!!   I awoke vomiting and my abdomin felt like it was about ready to split!  Thanks to that error, I now have a huge hernia. 

Hope you getting feeling better.   

[peleroja]

I agree.  I don't think anyone ever goes dry during the day.  You either have Extraneal or Dianeal dwelling inside.  I found out very quickly that you have to exercise every day to just stay even, let alone lose weight (it can be done).  Don't know what to tell you about the fluid.  Your abdomen will gradually swell to accommodate the fluid, just as it does when having a baby.  Initially I carried 2000 and now carry 2500. 

[denise1040]

Hello,
I am dry in the day. Just started pd 3 weeks ago. I think I fill with 2500ml at 5 cycles, with a hour and fifteen minute dwell time. so far so good as far as the cycler. No alarms, but think prescription needs to be changed. Feeling not as well as I did on hemo. Having alot of pre-dialysis symptoms. Nausea, fatigueand restless leg syndrome. Waiting on the pet test to determine how I filter. Then hopefully we can get this in order. All in all it's better than those needles 3 times a week.

[chook]

Denise, I had restless leg syndrome for about the first two months on PD. I'd never had it before. I spent lots of nights awake listening to books on my iPod. However, that has all settled down now. Hope it does for you too and that you start to feel better soon.