PD pain

[Ken Shelmerdine]

Does anyone on PD get a feeling that the suction mechanisms during draining is somehow tugging at the bladder causing pain which although not excessive, is nevertheless a bit unpleasant? It usually occurs near the end of draining or during the initial drain on the cycler when the abdomen is almost empty(I am empty during the day). I only experience it when I am awake so it can't be that bad because it it doesn't wake me up. Perhaps I'm just being a bit of a softie. I use a Baxter Homechoice Cycler.



EDITED:  Moved thread to proper section - Goofynina/Moderator

[Ginger]

I have experienced the type of 'drain pain' that you described and it does get better with time. The tube does shift occasionally and so can cause a bit of discomfort depending on where the end of it happens to be or what it is sucking against. I also use the Baxter Home Choice cycler and am dry during the day. From one of your previous posts, it seems that we are doing the same amount of dialysis--6L/night in 3 dwells of 2L each.

[goofynina]

It started off for me that way but it did get better with time, thank goodness.  Try and reposition yourself  (lie on your side)  Give it a little time,  it will find its place and the pain will go away,  but another bit of advice for you, make sure you get that air out of your lines,  i would hate for you to experience the pain of having that air inside you as i did in the beginning,  it was MURDER...  Good luck and keep us posted 

[angieskidney]

I was on the FMC IQ CCPD but I felt that shifting how you lay makes it feel better and it does get better with time and I felt the suction when I first started PD. It DOES get better over time as you get used to the feeling. I remember how it annoyed my bladder at first. I didn't like that. I forgot about it til you said it.

[Ken Shelmerdine]

Thanks for the info Goofynina and Ginger and Angie. Now that I know other people experience this and it's a normal occurence I feel a lot easier. My main concern at the moment is worrying whether or not this method of dialysis is going to work as the thought of Haemo really depresses me.

Another question, does anyone have erratic drainage on the home cycler? When I first started, those damn bleeps came on during every drain cycle saying 'Low Drain Volume  and I had to get out of bed and stand up for about a minute to get it going again.My home nurse changed the machine to tidal which means that the cycler leaves abour 200ml. in without attempting to get it out which improved things slightly. But the biggest improvement came when I lowered the cycler about a couple of of inches. this has resulted in problem free nights 60% of the time with low drainage occurring during one of the 3 drain cycles the rest of the time. Is there a limit as to how far you can lower the cycler before the gravity effects can cause problems with the fill volume?

To Ginger, Yes I do 3x2Ltr fills over 8 hours and dry duing the day using 1.36 yellow only.

[shay_pcb]

I get that pain too and was told that for some people it doesn't go away. I'm one of those people. Mine gets unbearable when it's close to "that time of the month." (Like you wanted to know that...hehehe)

[melshell]

I'm on the Baxter cycler as well, going on about 1 &1/2- 2 months now. I was told that the cycler could be no lower than 6 inches below (or above) the level of the top surface of your mattress. I'm doing 10L; 2000ml dwells/5 cycles. I thought I was being wimpy about the "pain" during drains too, but goofynina and others were very reassuring!!!  Thankfully I haven't had much trouble with alarms, only actually alarmed on 2 separate occasions and they were both during drain cycles, and repositioning corrected the problem both times without me having to even get outta bed!!  My biggest problem is the drain pain, I'm being awakened at the end of nearly every drain cycle with pain...I believe I'd trade ya in a heartbeat!! I'm hoping the drain thing will get better with time, at least that's what everyone keeps telling me. Tonight, infact, was the worst!! Felt like that sucker was pulling a plug outta my bladder!!! I closed my patient connector for a minute or two, repositioned, and finally bypassed the initial drain altogether. (I'm dry during the day, and my initial drain is usually on 1ml anyway) I finally got relief when I began to fill. I guess the rush of fluid moved the catheter tip away from whatever it was sucked up to...Whew!! It continues to be reassuring that other folks, especially newbies are concerned as well.  for posting.

[Ken Shelmerdine]

Hi Melshell and Shay
Sorry to hear you are getting the dreaded drain pain. I still get it but it doesn't  get that bad that it wakes me up.  Try setting your cycler to  'TIDAL'. This means that if your first fill is 2L, then your first drain is only 1.6L if for example your tidal setting is 80%. All subsequent fills are made at 1.6L and drains are also 1.6L. plus your usual UF so that instead of the catheter sucking away at very little when you're almost empty and causing the pain, there is still 400ml left in when the cycler switches back to fill. You'll have to do an extra manual drain at the end of therapy to get that 400ml out and perhaps it will be painfull then but if you can just put up with that, at least you'll get a decent night's sleep.

[melshell]

  I'll give it a try...

[goofynina]

Sorry to hear your having pain Melshell, please keep us posted with anything you have done to resolve this problem, i am sure others would like to know as well   thank you 

[mallory]

Melshell,  I was having the drain pain as well, so I asked the dialysis nurses about it.  They said I could bypass the drain if it got painful.  You just arrow down until it gets to bypass and then press enter (they said, I haven't tried it yet).  That's on a Baxter Homechoice cycler, if that's what you're using.  I hope it gets better, a couple of nights mine really, really hurt, but it does seem to be getting better.  I think Goofynina also mentioned laying on your side, that seemed to help me as well.

Good luck and keep us posted!

[melshell]

Thanks guys! I had clinic today and mentioned it...I'm doing everything they say to do: close the patient connector for a few minutes, reposition, bypass altogether if it's too painful. Nurse and Doc both say It'll get better...I mentioned to them that I'd spoken to someone on IHD who recommended I change to tidal, Nurse said if it continued and I wanted to try it it was just a matter of reprogramming but the difference was that by leaving even a small amount in at each drain cycle I may feel even fuller until the last drain, and then would almost always have to do a manual drain at the end...I don't know what's worse?! I usually awaken at the peak of each fill cycle too and have to nearly sit up in bed to get any rest at all, then I wake up at the end of each drain cycle with the drain pain. I don't know if I could tolerate any MORE fuller full feeling...(too bad they don't have a zombie smiley...lol!) Gave my first home epo shot this morning--excuse my language but I'll be damned if that needle is the same as my insulin needle!!! YIKES!! The gauge on that sucker felt like a garden hose!!! I thought I was just drained due to the lack of sleep, but turns out that my iron still isn't where they want it either, so I'll be going for Iron pushes twice weekly in-center for the next 5 weeks.....keep me in your thoughts, I feel like I'm really battling!!




EDITED: Removed Double Post - Sluff, Moderator

[Ken Shelmerdine]

Nurse said if it continued and I wanted to try it it was just a matter of reprogramming but the difference was that by leaving even a small amount in at each drain cycle I may feel even fuller until the last drain, and then would almost always have to do a manual



EDITED: Removed Double Post - Sluff, Moderator

Melshel
So sorry to hear you're struggling with PD. If you do tidal you shouldn't feel any fuller than normal because as I understand it the cycler after the first fill and drain, fills an amount minus to what you still hold in your abdomen. In other words if your fill volume is 2ltr. and your first drain leaves you with say 300ml., then the next fill will be only 1700ml. so you'll never be carrying  more than 2L. I don't know for sure whether I am right about that but I do know that when I scroll through the program settings on the cycler it says fill volume = 2L. Tidal volume 1600ml. It's worth a try. Best of Luck

[Pianolion]

It's good to see things are getting better on PD for you, Ken  I was in the same boat as you when I first started - it seemed like I was waking up every hour on the hour to pain, or some stupid beeping alarm - or most comically, getting tangled up in all the tubing!  Once, I even woke up with tubes in my mouth, God knows how that happened...

But it does get better once your body adjusts to all the weird changes.  Personally, I find that the pain lessens if I make sure not to drink any water a couple of hours before bed so my bladder is empty, so the drain doesn't push against it.  However, a little snack before bedtime actually seems to help my stomach settle better on the cycler - but everybody's body is different of course. 

[Pianolion]

Hi Meishell,

Lord I feel your pain with all you're going through - was in the exact same boat about four months ago or so, up to and including the Epo shots AND Benifer through IV, both given three times a week!   I've actually been off both meds for over a month now, since my iron is finally holding its own

All that's to say it really, really will get better soon for you - the first couple of months of PD seem to be the roughest, but the body just needs time to adjust and figure out its new setup.  So hang in there - you're doing awesome! 

[melshell]

LAUGHED OUT LOUD when I read that you woke up with the tubing in your mouth!!! That hasn't happened to me YET, but I wouldn't be surprised!! Thanks for the encouraging words, it helps just to know that everybody's 1st couple of months is/has been as frustrating as mine. I'm off to the clinic for benifer now...ughhhh!! (Second Epo at home is tomorrow...suppose it's too early to begin dreading it? -lol!!) <-surely a smaller gauge needle could be used? -Even if I gotta buy one!!...maybe if I measure out the 0.5cc, and somehow figure out how to draw it up in the insulin syringe... SOMETHINGS GOTTA GIVE WITH THAT GARDEN HOSE!! Wish me luck!

[shay_pcb]

I'm so used to sleeping in the hospital with an IV coming from my arm that I don't get tangled up in my tubing.

I also have been on Epo and Venifer pretty much the entire time I've been on dialysis. (about 9 months) I guess I just can't retain the iron or w/e.

[rimbo74]

After reading this, I'm now concerned.  I got my catheter a couple of weeks ago last week I went in to get it checked by my PD nurse.  She "only" flushed it and I got that pain.  Am I in trouble?

[shay_pcb]

After reading this, I'm now concerned.  I got my catheter a couple of weeks ago last week I went in to get it checked by my PD nurse.  She "only" flushed it and I got that pain.  Am I in trouble?

Maybe not...bc it's new. I started dialysis as soon as mine was externalized and I was in the hospital and on pain meds at the time, so I don't know if it ever hurt. Just let the nurse know when it happens and he/she can tell you if it's normal or not.

[renal30yrs]

I'm sure all technologies concerning PD must have improved somewhat.  It certainly was very unpleasant in 1976.

[angieskidney]

I'm sure all technologies concerning PD must have improved somewhat.  It certainly was very unpleasant in 1976.

Oh yes definately! Back then they still had you wrap the bag with all the tubing around you I was told! Now there are "Quick snap disconnects" and you have just your made small catheter and that is all. You can even eat and everything once you are hooked up because of how the disconnect is now! 

[renal30yrs]

Back then the worst part was the pain.  The ungainly washingmachine-like device slammed in so much fluid in you.  You could hardly breath for 90 mintes or so while the fluid was in you.  Oh what a pain and nightmare.  Plus Tenkhoff cather implanting technology was not well established and a lot of screw ups.

[angieskidney]

Back then the worst part was the pain.  The ungainly washingmachine-like device slammed in so much fluid in you.  You could hardly breath for 90 mintes or so while the fluid was in you.  Oh what a pain and nightmare.  Plus Tenkhoff cather implanting technology was not well established and a lot of screw ups.

Wow! First time I was on CCPD was in 1990 and I remember the machines were bigger than now (now they are soooo unbelievably small) but I am sure you could show us some amazing pics! I would be interested in seeing some as it amazes me how far we have come!
 

[renal30yrs]

Some teaching hospitals have little musuem/shrine section dotted with true pieces of antique.  I even saw the first bathtub dialyzer Dr. Johan Kolff worked on as soon as he came to America in 1947. (Brigham & Women's in Boston)

[melshell]

no worries rimbo74, my cath was VERY difficult to even flush the first time-it was clogged with tissue and "surgical debris".  it was a bit uncomfortable, (the flush) and granted the initial manual exchanges you'll be doing in training will be a bit uncomfortable as well, but you will soon get used to the process of draining, filling and dwelling. i've had drain pain since the begining, and believe that i'll probably always have it--it's something you'll get used to unless you're one of the lucky ones that says they don't have it after a while. it helped me a lot to be able to see a tenkhoff cath. i asked my nurse to show me what one looked like, and i was able to get a better idea of what it was doing in my stomach after i actually saw one. keep in touch, let us know how training goes!!