Probems with PD

[beachbum]

I'm really new to PD and having a few issues. I'm wondering if anyone can relate or give me any advice.

The PD process itself isn't that bad. I have it down besides for a few mistakes in the beginning like forgeting to use a clamp and making a mess lol. It can be annoying having to do this every 4 hours or so but I can deal with that. I'm having problems removing extra fluid. In fact, I tend to absorb more fluid than I lose. I asked my PD nurses about it and they act like it's not a problem in the beginning. But then I brought it up again the other day and the nurse scolded me for not telling them! But I did tell them! Also, there is a serious lack of communication with my PD nurses. I missed an appointment and they had my neophrologist call me threatening me and saying they won't be able to help me if I don't cooperate. What he was implying was that they wouldn't let me be a PD patient anymore.

The thing is I am cooperating. It's like today my PD nurse wanted me to come in tomorrow instead of Thursday to draw labs but I have my solution being delievered tomorrow and nobody will be home if I'm not here. I also just had labs done on Friday. There is one nurse in particular that is very unreasonable. She's also very rough and mean when drawing labs, to the point that I just want a lab slip so I can have someone else draw the labs on me. I'm not a big fan of having my blood drawn but when she does it, it hurts BAD.

This all being said, I'm scared because I'm not pulling off the extra fluid and I'm scared to talk to the nurses about it. I had to stop PD for about a week, (I still have some kidney function) and I went from 237 to 221 in 3 days!!! Once I started PD again my weight is going right back up. I don't want to gain a ton of weight. I'm trying to watch what I eat and I just started going for daily walks. But what is strange is the other day I pulled off an extra 900cc in one exchange but today I absorbed 400 in one exchange and another 100 in my last one. Both times I used greens. There really seems to be no rhyme or reason to this madness. I'm not sure what I might be doing wrong.

I really want this to work so I can just go in for my monthy labs and be independent. The lack of communication at my PD clinic is so bad I almost want to find another clinic. I also don't like the way my doctor threatened me because I missed one appointment. I feel like I child all over again and like I'm being penalized for speaking up or aking questions about my care.

Sorry if I sound whiny. That's not my intention. I just don't know where to turn for answers.

[fearless]

so sorry you seem to have found yourself with some bad eggs    Is it possible for you to get on a cycler?  That would allow you to do consecutive exchanges through the night.  Those would be shorter dwells with less time to reabsorb the fluid.  I gained a lot of weight on PD - about 30 pounds over 8 years, without eating more food.  It was from the dextrose (sugar) in the solution. 

Regarding the lack of communication, is there one person you can insist on always talking to?  So that when you tell that person: my delivery is that day so i can't come in - you can go back to that person to verify what's been said?  I have experienced the problem that when I tell one person one thing, that even though they work together, it's like the other one never got word.

I can relate to be treated like a child too.  I'm so sorry.  Just be clear and speak up for yourself.  That's all you can do!
As for the mean blood-draw-er,  I once asked if someone else could stick me because the nurse who wanted to do it could never get it right and it was getting bad.  She was the sweetest woman you could imagine, she just couldn't stick me.  I was very matter of fact about it, and there were no hurt feelings.

Gosh, I hope you can get past this.  PD can be great for really being independent.  Once or twice a month to the clinic, and that's it!

[beachbum]

I've thought about that. It does seem like the longer I go between exchanges, the more I retain. Although my last exchange was only 4 1/2 hours since my previous one. At first I wasn't urinating as much as I normally do but that seems to be back. But I'm still putting on the weight so I must not be getting all the fluid out. I guess it's a lot of trial and error in the beginning. She did mention me trying one red bag a day. I'm just scared since I pulled off 900 extra with a green. Can someone pull too much fluid off in one exchange?

[jeannea]

Yes you can pull off too much but you'll know if it was too much because your blood pressure will drop.

A suggestion: When I learned manuals I was retaining at first also. I found I wasn't giving the drain enough time and it helped if I moved around some to make sure it was done draining.

But I only do manuals occasionally. I love my cycler.

Keep trying. You'll get the hang of it. And insist the nurses treat you like a grownup.

[beachbum]

That makes sense. The day I had the exchange where I pulled off 900 my blood pressure was awesome! I think it was 119/71. I even checked it a few times. Normally it runs about 138/90. I've been trying to get it down. When I started absorbing again my blood pressure went back up.

[beachbum]

And the good news is this morning I actually lost about a lb since yesterday. At least I didn't gain anything for the first time in a week. I'm going to try shorter exchanges and watch my salt intake and see if that helps.

[billybags]

beachbum, Welcome to the site.    Starting PD is a big learning curve, there is so much to learn, so much to fined out, but you are in the right place. I am sorry you have not got good support with your renal team. So you must be your own advocate. The draining out to start with is hit and miss even when you have been on it for a while, its still hit and miss. We are in the UK and our bags are Yellow, 1.36 Green 2.5 We used  3 yellow day time and one green at night. The green is the strong one and will supposedly pull of more. Are you leaving about 4 hours in between your exchanges? Are you following a kind of renal diet, no salt, no crappy food, are you drinking too much fluid to put the weight on. Are you keeping an eye on your bowels because that is most important, if you are constipated you will not get a good drain, so are you taking laxatives.There are loads of things that you will need to learn, so get learning. Ask any question you might have, there are lots of people on this site that will help.

[Joe]

I also had issues with my drains when I was starting out on PD. It did take about a month for things to settle down to where I was pulling consistently during the day. When I changed over to the cycler, that settled down. I will echo billybags check on constipation. It is the first thing my PD nurses ask any time I raise a question about draining. Apparently any level of backup will impact how we drain. I'm taking both a stool softener and MiraLax daily to keep things moving, so to speak. It all seems to be working well, at least for me.

And I do all Greens (2.5%). Yellows make me retain like a sponge and I have only had to do 1 red since I started.

Here's hoping things settle down soon for you.

[Willis]

I'm on a cycler but also do manuals occasionally. Personally, I just can't do Yellows at all...I just suck it up. If I use a Yellow I get negative UF. So I must always use Greens or Reds. I know they make it sound like a big deal to avoid Reds, but for me it's just necessary from time to time. Even on Greens I will have low UFs.

 

[beachbum]

I heard about constipation being an issue while on PD. To avoid that I started eating Fiber One bars for breakfast and haven't had an issue at all in that department. In fact, the bars make me more regular than I ever was before I was on PD lol. I have been watching my fluid intake and sodium but I did notice after I ate a bunch of pizza the other night I was absorbing a lot. I need to avoid that kind of food. Way too high in sodium.

[Joe]

... but I did notice after I ate a bunch of pizza the other night I was absorbing a lot. I need to avoid that kind of food. Way too high in sodium.

But we have to be able to eat pizza once in a while! And I realize it's way high in sodium, but straying occasionally is not the end of the world. Just need to be aware of it and adjust. I had Chinese last night. I know it's not the best for me, and I'm adjusting for it today by walking the straight and narrow with my eating today. I figure it's the price I pay for straying now and then.

[highway61]

But we have to be able to eat pizza once in a while! And I realize it's way high in sodium, but straying occasionally is not the end of the world. Just need to be aware of it and adjust. I had Chinese last night. I know it's not the best for me, and I'm adjusting for it today by walking the straight and narrow with my eating today. I figure it's the price I pay for straying now and then.

Hey Joe, I like your way of thinking. Gotta have some pizza every once in awhile.

[mykey711]

Don't sweat over the numbers and volumes as long as your dialysis clearances are adequate.(measured monthly in my case). U/F will fluctuate based on your diet, blood pressure, fluid intake etc. It all balances out.
I had terrible drain pain for about 6 months. That's about gone. I developed 2 hernias. Those were repaired. Keep on trucking, change nurses, and good luck.

[chook]

G'day BB. Hoping things settle down for you and PD starts to run like clockwork for you. All the best.

[beachbum]

Yeah, you gotta live a little too. Pizza is my weakness. So is soda. But I try to limit myself.

[Grumpy-1]

beachbum.  first off, if you can switch PD clinics do so.  You have enough to worry about without being harrassed by the nurses.  I guess I've been lucky,  I've been on PD for about 2 years now and have managed to lose weight.   I'm able to eat just about anything I want.   I was a Pepsi drinker (BIG time) before dialysis now I can't stand the taste of it or any sodas.  I also found that I can only eat about 1/4 the amount I used to eat.  Not sure why that is, but that helps keep the numbers in check as well.

I'm sorry about your nurses.  I have 3 at my clinic and each month for labs we have a runing joke going. I'm a hard stick so the nurses goal is 1 stick - fill the 4 tubes.   This last go around, one nurse tried 3 times and only got one tube. the second nurse got three tube in one stick.  So we were teasing the first nurse about it.  But the time before,it was the other way around 3 tries for the nurse that took 3 tries this time.  And one of my nurses feels SOOOOO bad if she can't get it the first time and I jump a bit from the pain.   I do love my nurses.

[tbarrett2533]

Since you are new to PD, please allow yourself some time to adjust 

have you tried using greens (2.5) and I don't like them and dont use them but you can use the red (4.25)  Yellows (1.5) just might not be strong enough for you, I can only use one yellow a day or forget about it 

until you have your PET test you really wont know exactly what will work best for you so in the meantime I say keep playing around with it until you find something that works best for you!!

CAPD might not be for you (although I LOVE it and the flexability of it and how portable it is) (b/c you complained about the every 4 hours) have you thought about the cycler??

As far as those nurses... well first of let me tell you NO ONE will talk to me like that!!!! I look at it like this is MY BODY, MY HEALTH and don't friggin tell me that I didn't tell you in the first place that I was absorbing!!!! where are your flowsheets that will indicate that you were in fact absorbing and documenting and they were just not paying attention!!
as far as missing an appointment, life happens and so does missed appointments and that's what I would have said to them!!!  so I guess what I am saying is, stand up to them a little bit and let them know who's the boss of YOUR body and YOUR health!!! 

good luck to you!!!!


keep us posted over here!!!