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Author Topic: Terrible pain from PD fill  (Read 4324 times)
kickingandscreaming
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« on: January 04, 2016, 04:37:33 PM »

Today I went in to have my PD catheter flushed.  Until now, I have been slow to fill so my nurse has had to put the bag high on the IV pole to let gravity help out.  Until today, I never experienced any discomfort from the slight amount of filling that's involved in flushing (I'm still in in-center HD awaiting PD training).  Today's flush/fill was different.  She got barely 1-200 ml into me when I experienced really awful pain in my lower peritoneum.  Like bad menstrual cramping or bad diarrhea cramping.  I became light headed an almost a bit nauseous from the pain.  It was a deep, achy and pervasive--not a sharp--pain and it lasted a good 1/2 hour.  She immediately drained me and took my BP (fine) and reckoned that it was caused by too fast a fill (from the great height).  I hope she's right because that means whatever was slowing it down before is not happening now.  But I don't really know if that is the reason this happened.  All I know for sure is if this is the way PD is going to be for me, then I'm pretty panicked about doing it again.

Anyone with experience of this? Thanks.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #1 on: January 05, 2016, 08:19:21 AM »


It is not uncommon for many to feel 'bloated', a sort of overly full feeling as if you ate a very big meal.

Pain as you describe is not common.

Some people are more susceptable to feeling pain than others, but even those persons are generally found to have a cause for that pain.

Placement of the catheter is critical to minimizing these pains.  You should contact the Surgeon and ask if a CAT scan could give an indication of the cause of your pain.  I don't think a simple X-ray will give near as detailed view if the cath is firmly abutted against an organ or the abdominal wall.

It may be possible that the Surgeon may have to 'reposition' the Cath.

The difference in elevation of the Bag on an IV pole will make a difference in flow rate, but that alone should not be a cause for such intense pain.  But I've been wrong before.  If scheduled for another 'fill' perhaps try adjusting the bag height even with your head if sitting.  This should still flow but at a much reduced rate.  Hopefully this makes a positive difference.  If not, then definately make an appointment to talk with your Surgeon.

Take Care,

Charlie B53
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kickingandscreaming
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« Reply #2 on: January 05, 2016, 03:07:22 PM »

Thank you Charlie.  I am seeing my surgeon tomorrow for a follow up.  I will definitely mention this to her.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Whamo
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« Reply #3 on: January 17, 2016, 08:40:41 AM »

I had serious pain from carrying too much water.   I had constipation from binders getting stuck in my system, add a few liters for dialysis, and viola, "discomfort" as they say in the Baxter manual, but pure pain from super bloat. 
It's the worst.   I used to drain myself manually when it got too bad.  It's important to keep constipation at bay. 
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kickingandscreaming
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« Reply #4 on: January 17, 2016, 04:57:50 PM »

I think I am definitely having a constipation issue from Renvela.  Not sure if there's any other alternative that wouldn't also be "binding."  But, it turns out that my extreme pain on that particular fill was because the fluid entered way too fast and it shocked my peritoneum.  It, thank heavens, hasn't happened since.  Even my ongoing issue with constipation hasn't really interfered with the filling and draining.  Whether i am getting good clearance or efficacy remains to be seen.  i'm still too early in the process to know that yet.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #5 on: January 18, 2016, 06:54:47 AM »


I would imagine procedure for PD is pretty close to the same everywhere.

I have blood drawn and labs at every monthly clinic meeting.

Every third month they give me a urine jug and two PD Collection Bags.  I connect these bags to the drain of my Cycler the night before my Clinic visit instead of draining I save the fluid.  They send samples to the lab and calculate the amount of each elements PD removed.  With that info and the blood tests they can very accurately follow how efficient PD is working, or if any adjustment needs to be made in my 'program'.

The Cycler is a very neat tool.  We can adjust thee number of cycles, the amount of fluid, and the duration of each cycle.  Adjusting the solution bags, strength (%), and selecting what size(s) are needed to give you the total amount of volume isn't too tough.

Our team will help you work out any changes needed to get you to a 'balanced' state.

It is also very important that you follow directions.  Write down your weights and B/P's both morning and evening EVERY DAY as any change of more than a little can be an indication you may need to pay attention to.


All of this will be well covered by your PD Nurse during training, then reinforced at every monthly meeting.

YOU are your Pprimary Care giver.  You will learn to keep your chart, and watch, learn, how stable you can be.

It gets easier as you go along, until it become a normal part of your daily routine.  Just like changing your socks.

Take Care,

Charlie B53
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kickingandscreaming
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« Reply #6 on: January 18, 2016, 02:40:34 PM »

I'm not on the cycler yet and I have yet to do a full day of manual (Wednesday will be the first) so it will be at least a week before I bring all my bags with a 24 hour urine same to test my adequacy.  there's no telling when I will get on the cycler with the current Baxter back log, so it might be a while before I can let the cycler do most of the work for me.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #7 on: January 19, 2016, 08:24:47 AM »


I believe everyone should have the experience of doing manuals just so they will have the confidence that they can.  That way if their power ever goes out for annhy period of time they will still be able to do exchanges.

I did manuals for my first year.  I didn't think I would have enough freedom, range of movement to take care of 3 dogs and 2 cats.  After losing the two oldest dogs I switched to the Cycler.  I LIKE IT!  The llength of the hose does limit my movement somewhat, but if I do need to go farther I wait until the 'Dwell' cycle comes up and I have a bit over an hour. Disconnect and cap off the line and do what I want.  If I go over the machine alarms to remind me I am a dumba$$ and I need to get back to business.  Usually this is late evening and about time to go to bed anyway.  So all is still well.

Your Nurse may frown at the idea of you 'Capping off' so remember if it comes up.  This is only an 'As needed' thing, NOT an all the time thing.

And ALWAYS make double sure your hands, cap, connectors, etc., are CLEAN.   You do not want to risk contamination just because you wanted to run into the kitchen and get a drink.

I keep a couple of liter soda bottles half full of water on their side in the freezer.  I finish filling one with water from the refrigerator jug so it immediately has cold water available when I want a sip.  I stick that bottle into a foam cozy thing, and cut a little larger hole in the bottom of another one so I can slide it down over the bottle top.  The whole bottle is cozy covered.  I have cold water available on hand all night.  In the morning refill it to half and lay it in the freezer for tomorrow night.  With two bottles I always have on ready for that night.

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sahern
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« Reply #8 on: January 21, 2016, 12:06:07 AM »

The first few times I did manual PD every thing was fine and I thought this will be easy.  The second day of training the pain was unbearable.  They had me try and control the flow with the transfer set.  That did not work.  The next day the pain was so bad on the fill that they had me stop and drain out what little bit made it in.  I went to get an x-ray and make sure everything was in the position where it belonged.  Everything was fine and in its proper place.  When I returned to the clinic I started training on the machine and had the same problems.  (They trained me on the machine right away as I live 350 miles away from the clinic and they do this if you are picking the process up.)  The pain was so bad that I thought that I would have to switch to hemo.  The nurse who trained me had never see anyone have pain when filling. I learned from I hate dialysis that I was not the only one.  After I got home and began PD on my own and was still having drain and fill pains to the point of giving up.  After a while it did start to get better and now after 1.5 months I almost never feel it and when I do it is very mild.  One thing I learned one night when I unhooked because of the pain when draining was unbearable (I was empty) and called the clinic the on call nurse said that if you stay still for over nine seconds the machine will start the fill cycle.  What do you know it worked.  Hope this helps as in my case the pain did go away. Good luck. Shaun
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Charlie B53
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« Reply #9 on: January 22, 2016, 07:02:57 AM »


I suspect that those of us with 'ample' bellies has fewer episodes of fill pain.  While those of small bodies may be overly 'stretched' by filling with 2 liters of fluid.  You can only fill what is comfortable for you.  If that is a problem then have a serious talk with your Neph.  Perhaps there can be some adjustment to your 'program' to compensate for a reduced fill volume.  If it isn't too bad, over time the membrane will stretch and more easily fill the volume without so much pain.  But that won't happen overnight.

Drain pain can happen to anyone.   Sometimes at the end of a drain cycle it seems as though the the machines suction on the hose has sucked up tight against a nerve.  OUCH!!!!  Almost doubled over with pain, until the machine begins to fill.

This can also happen during a manual drain if you are on a stool instead of a chair.  The higher elevation from the drain bag on the floor can cause an increase in flow speed such that when you run out, the vacuum is greater that that when sitting in a lower chair.    My computer 'desk' is more like a counter.  Much higher than any desk.  So I use a nice padded bar stool.  Fits my butt and that's what counts!   So I've soon learned I get, or got, those drain pains that I never had i the Clinic sitting in a chair.



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Fabkiwi06
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« Reply #10 on: February 01, 2016, 02:18:22 AM »

I've been on my CAPD for two months now, and the past few weeks I've had bad cramping/irritating pain during my fills. It's worse with a high strength solution. At first I thought it was a temperature issue, but I've heated my bags to all sorts of temps and still nothing.

You know the feeling when you get bleach on your skin while you're doing the laundry? That burn/itch feeling... it's like that, but inside and INTENSE. I have to clamp every 200 ml or so - for some reason it stops when I'm clamped.

Any ideas? Catheter is in good position and bowels are very regular.
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Charlie B53
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« Reply #11 on: February 01, 2016, 07:16:46 PM »

Pain during the fill that 'stops' when you clamp the line and temporarily stop the flow makes me wonder just how high do you have your bag?

Increased elevation, the difference in height from end to end of the hose is referred to as 'head'.  Are that was what I thought I learned about water flow in  Physics a very long time ago.

Increased 'head' increases pressure which in turn causes an increase in flow RATE.

Have you seen any of the videos of a loose firehose?  Whipping about like a mad snake.  Imagine how this could cause pain inside a person.

If using an IV pole try lowering the height of the bag.  You can drop it to even with your head but also remember this will extend the length of time to fill.  Play with it, find a comfortable height that works for you.
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kickingandscreaming
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« Reply #12 on: February 01, 2016, 07:20:10 PM »

Quote
I've been on my CAPD for two months now, and the past few weeks I've had bad cramping/irritating pain during my fills.

Are you sure you're not hanging the bag too high in relation to where you are?  I had terrible pain when the bag was really high and it flowed in too fast.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Fabkiwi06
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« Reply #13 on: February 02, 2016, 03:32:03 PM »

I've been adjusting the bag height and speed... No luck. Discussed with clinic today... The thought is that the dextrose is irritating somehow. We don't really have a solution yet.... Just try to manage it, use lower strength as much as possible, and watch to make sure it's not an infection.  >:(
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surprise kidney failure - oct. 2015
emergency hemo - oct. 2015
switched to pd - dec. 2015
transplant list - apr. 2016
kickingandscreaming
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« Reply #14 on: February 02, 2016, 03:53:05 PM »

I sure wish the U.S. would get its act together and start offering other dialysate mixes like they do in other countries, e.g. amino acid/bicarbonate dialysate that not only improves protein nutrition, but doesn't make people diabetic and doesn't over time ruin the lining of the peritoneum.  There are lots of dialysate options out there (besides dextrose and icodextrin), but for some reason (probably $$$) they are not available to us.  What a backward medical system we have here.  The "greatest"  Hah. BS.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #15 on: February 02, 2016, 04:56:24 PM »


The simple fact that there is pain WITH inflow, that stops when the flow stops tells me it is NOT a reaction to the dialysate, as the dialysate remains there even you you stop the flow.

The answer has to be in the flow.  Either the rate of flow across a series of nerves or the catheter placement laying against a nerve such that flow causes a vibrational input that you perceive as pain.

While not fond of chemical dependence, there are times and conditions that meds may be helpful.  Pain control is one of those times.  No person should have to deal with chronic pain if there is a safe and effective treatment that actually makes a difference.  Classic narcotics do not relieve pain, they merely mask it by fuzzing our perceptions that we no longer care so much about the pain. I take tramadol, a synthetic pain reliever for other causes of chronic pain.  I think it is wonderful as it DOES make a noticable reduction in my pain. And I no longer have any of the traditional irritating side-effects of classical pain meds such as constipation, brain 'fuz', etc.   Talk to your Dr.  See if it may be a viable option for you. Your body will eventually adjust to the insult of added liquid to your innards, but this may take time, which may be painful for some time yet.  If your Dr agrees then Tramadol may be very helpful.

Take Care,

Charlie B53
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