Having a hard time with CCPD

[ashleyasherman]

I'm on the Baxter cycler and I've been done with training and home now for about 2 weeks. I've always had drain pain, even through my training. My pain seems to move. Sometimes it's deep down in my bladder, sometimes it's closer to my butt and most recently it's been in my left side. Well since I've been home it's gotten a lot worse and I even have pain when I fill as well. I've tried all I can think of when I drain or fill to decrease the pain like walking back and fourth, getting on all fours, laying on my side or flat on my back, sitting, dancing, pretty much anything. I keep 500ml of fluid in me during the day so the catheter can kind of float and that seems to help with the cramping I was experiencing when I was dry during the day. They did an x ray because my PD nurse thought the catheter may be too long and may need to be adjusted but my nephrologist called me yesterday and said it's in the right spot. Now I have pain all day in my hips and my left side like where you would experience a side ache. My catheter is on my right side. My doctor told me this is all pretty normal and there will just be an adjustment period in the beginning as my body gets use to everything. I guess my question is, is this normal? Do a lot of people experience pain in the beginning? I'd also like to mention that I have a fairly high pain tolerance and there has been times when the pain while filling is so bad I've had to disconnect and do a manual. My bags are always clear, and I never have a temp so there's never been a worry about it being peritonitis. Also, if it helps at all I do 4 exchanges each with 1300ml of fluid and my machine is set to tidal so I only drain 90% after each dwell to help with the pain and do a complete drain in the morning. Thank you for taking the time to read this. I've just been feeling so frustrated and like no one (except my PD nurse) takes me seriously.

[cassandra]

Hi, I remember those pains (and it's a long time ago now) with draining, and being empty. But it will get better.
Is there a reason for only having 1300 ml fills? Is it poss to change the tidal in 80/20%. I hope you'll get to feel better soon.

Love, Cas

[aasherman]

My nephrologist is working me up to 2000 ml fills and started me out at 1300ml since I feel so full at that amount. Thank you for your response

[skinnacat]

I wanted to ask you if u have this pain with manuals or only with the machine??
I had to stop using the machine at night cuz i was having so much pain during the day when i was dwelling.
I have 2000 in me all day and was filling with 2500 on the machine...i felt like i was gonna explode.
So now i can only do manuals 4x a day...and i still have some drain pain and some pain when filling.
But no pain in between treatments so it works much better. I have been doin pd for 8 months and still have some pain but i know
its way better than hemo so i have learned to tolerate it i guess.

[Charlie B53]

I suspect a person smaller than I may not be able to fill such a volume without discomfort, thus the Neph's orders to begin Dialysis with a low volume and later begin to increase it.

When I first started PD two years ago I was doing 4 manuals daily, the last using Ico and leaving it in all night. 2 liters every change, but I'm 6 foot and was 272 pounds then so 2 liters didn't seem that much.  I didn't have any discomfort with the fill or the volume, but I did occasionally have a drain pain.  It seemed like the cath would suck up against the wall and 'stick' there, causeing a terrible pain until I finally re-filled.  Some of my drains did have 'clots' or 'whitish strings' of fiberine which I suspect where sort of like 'scabs' that had formed to cover the irratated spots of the membrane, sloughed off once the irrated areas 'healed'.  At no time was I 'dry', always having Ico for the long nightly dwell.

After a year of manuals I switched to the Baxter cycler. During training and the few sessions using the machine we discovered I had problems with full drains and switched to 'Tidal', leaving a percentage in pretty much ended any drain pain.  Even now after a year of the machine there is, or hasn't been any pain with either the initial total drain, or the final drain before the final fill with Ico in the morning before getting off the machine.  I carry that 2 liters of Ico all day with no notice of it other than the pressure on my bladder and stomach.  My kidneys still make a very small amount, so I feel the need to go, but there isn't much come out.  And I eat far less than I used to.  I've lost a LOT of fat, now at 205.  Close to a 70 pound weight loss.

I should add that my perception of pain is skewed, a lot.  Other permanent injuries have me taking a lot of acetaminophen, Tramadol, and wearing a Fentenyal patch.  I still feel pain, just nowhere near as much as without my meds.  I fact, the last two days and nights I've been a real mess, just besides myself with aches and pains, restlessness, no way could I get comfortable enough to sleep, and not a clue what was wrong with me.  My Fenteyal patch is good for three days at a time, when it came time to change my patch I discovered the old one MISSING, GONE, not on me!  Not stuck inside my shirt, not a clue where or when it came off.  You can bet there is a big piece of tape covering this one now.  NO WAY will it come off.  I finally slept last night.  Well, three hours at a time.  Which is the most I've slept at one time in a very long time, years.  Usually I am up every two hours.

Talk to your Neph, maybe you still need a larger volume left in throughout the day which may help to 'stretch' the membrane, and skin, to make it more compliable to a total fill volume during use of the Cycler.

Drain pain, you may need a small amount of medication , not enough to dull your senses, maybe not narcs but acetaminophen ot Tramadol if you can tolerate either of them well.  Tramadol works for me, as does Fentenyal, not 'druggedness'.  Nothing like when I used the traditional opiate based meds.  No buzz, no perception even of using anything.  Just a marked reduction of pain.

I have to admit, the best thing about PD, NO NEEDLES, and I am NOT sick any longer.  I often think that I am Blessed.

Take Care,

Charlie B

[ashleyasherman]

Thank you for the replies! To answer some of your questions, yes I have pain with manuals and the machine. I use to only have drain pain with manuals and was fine when I would fill but now I have drain pain and fill pain. I only fill with 1300 ml because I'm 5'4" and 125 pounds so anymore than that and its quite uncomfortable. I know I eventually need to work up to 2000 ml fills but right now I feel okay at 1300 ml.

This week has been pretty hard dealing with all of this. I saw my nephrologist on Tuesday and she wanted to get a CT scan to see if my catheter was sucked up against anything and possibly causing internal damage. She told me to take a break from the cycler and to just do manual exchanges during the day if I could (I work 10-12 hour days so some days its hard). So Tuesday night I got off work and was all set up to do a manual and I did the initial drain and it was pretty painful but I just dealt with it since I know the initial drain doesn't take very long well when I started doing my first fill it was the worst pain I had experienced so far. It was all over, lower abdomen, upper abdomen, bladder, and my hips. I immediately closed off my transfer set and there was no relief. I then clamped the line and started to drain out what I had just put in (probably 10 ml) and then I disconnected. The pain lasted for about 20 minutes after all of this. I was in tears, nothing I did helped with the pain. It slowly started to go away after about 20 mins but ever since then I've been extremely sore and had this lower abdomen pain that lingers. I had the CT scan on Friday and it came back normal. My next step is to go see my surgeon who put my catheter in. I'm really at a loss. I'm terrified to connect and told the nurse of my nephrologist that I wont do dialysis until they figure out what's going on. What is so weird to me is that the pain has gotten worse over time. I've had pain from the beginning but in the beginning it was very manageable. If I slowed down a drain it seemed to help and I was always able to tolerate it. Now even thinking about connecting and doing a drain or fill frightens me. It's been miserable and at this point I just want them to take it out. I've never been on hemo and everyone I've talked to says PD is so much better than hemo so that worries me if I do have to make the switch. My nephrologist did say that some people have extra sensitive nerves in their peritoneum and that can cause pretty bad pain, but I just don't understand how my pain would get worse over time and not just be bad the entire time. Thank you to everyone who reads this, I really appreciate all the replies! This is the only place I know to go were I might be able to get some advice or answers. 

[Charlie B53]

I have multiple prior permanent bone, joint, and muscle injuries that have had me taking all the traditional opiate based pain meds.  Many years ago my Dr's switched me to Tramadol, some type of synthetic pain reliever, and it works for me.  No druggedness, no groggyness, just no where near as much pain.  Over the years the as the damaged areas continue deteriorating the pain levels climbed again until Dr's finally added the fentenyal patch.  Again, pain relief without feeling drugged.

Talk to your Dr's about your pain and possibility of using a synthetic pain meds.  It has made a significant difference for me.

PD has worked very well for me.  I am hoping your Dr will realize how beneficial the correct pain meds can help you.

Take Care,

Charlie B