Pain in ribs (peritoneal dialysis)

Ask Our Experts Joshua Dipzinski, PD Expert
#1

Hi all (Hi Joshua),

I have been on dialysis since 2011. I did hemodialysis 2011-2020, but the shunt had to be closed because of an infection, and the doctors switched me to automated PD, I’ve been doing this since June 2020. I had a bunch of problems in the beginning, breathing issues and panic attacks mostly, but I managed to bring it all under control by starting Tai Chi and Qi Gong (the breathing exercises helped a lot).

In Dec 2020, I started getting severe pain in the stomach area. After some weeks of putting up with it (having talked to my doctors of course), I went to emergency, and they did a CT scan and endoscopy, but found nothing wrong. My doctor concluded that the pain is psychological in origin; he said that from the start of PD I had one problem after another (this is true), and since no physiological cause can be found, it is likely to be psychosomatic. As a result, they want to switch me back to hemo, which means getting a new shunt installed. I’m reluctant to go that route because I am on a transplant waiting list (waiting time in Germany is 12 years, I am at year 10), and want to reserve the new shunt for after my transplant fails.

In the meantime, since January 2021 I have started getting pain in my ribs. It usually starts around 3AM when the cycler is in its 5-6th cycle. The pain is a kind of tightness in the ribs. Stretching and breathing exercises do give some relief.

Sorry for the long preamble. My question to this list is: do others also have this problem? What’s the possible cause (if it’s not purely psychological)? My doctors seem uninterested in investigating the cause, they just want to switch me back to hemo. But if I can solve this pain problem, I could keep going with PD until my transplant happens—I have to hold out for another two years.

#2

You find time and time again the quickest solution is to return to hemodialysis. Unfortunately it’s always easier than taking the time to medalla investigate.

What solutions are you using? What’s the fill volume, and how much is being left after the first few cycles? Are you a low transporter or a high transporter? All of these things are important to review because it can tell us if you are getting overfilled which could cause the extra pressure on the ribs if you aren’t completely draining after each cycle. Typically whether it’s a liberty or a Amia or Pro-Choice, it has setting that prohibit this overfilling.

Im my experience males can be less inclined to take additional fill volumes because of complaints of pressure. The fact is physiologically men can handle 3500-4L easily.

I currently have a patient with your same situation and she is headed to the surgeon for revision and potentially a new cath to be placed.

Continue to fight for the PD, continue the exercises and plan for a successful transplant NOT for it to eventually fail! Answer the above questions about the solutions, fill volume, and I will do my best to assist!

Josh

#3

Hi Josh,

thanks for getting back to me so quickly. I use Pro-choice every night from 9:30PM to 7:30AM, with the following solutions: on alternate days, I use either: (a) two 5 liter solutions of 2.27%, and one Extraneal solution, or (b) one 5 liter solution of 2.27% and one of 3.86%, and one Extraneal solution. The cycler does 8 cycles over 10 hours, and each cycle has a fill volume of 1.2 liters. After the last cycle, there is a final fill of 1 liter of Extraneal (for the whole day). The reason for alternating is that I get too try if I use 2.27 and 3.86 every day. I don’t know if I am a low or high transporter; the doctor never told me. My doctor is not very communicative.

Recently, because I developed numbness on the soles of my feet and on my back and because this might be due to me not getting enough dialysis through the PD machine, the doctor recommended that I do one additional manual exchange at 4PM, with a 2.27% solution (1.2 liter). I have been doing that for one week now, and I always have negative ultrafiltration (I put in 1200 ml, get out only 1100 ml at most, sometimes 1000 ml). But in the night the drain volume is always higher than the input volume—I have spot checked in the night when a drain happens, I look to see how much was removed. So I can’t be sure I always drain fully, but whenever I have checked the machine does drain the solution fully.

BTW, I am a 56 year old male, 165 cm and 62 kg dry weight. I have been transplanted before (when I was 20 years old, my father gave me a kidney), this was in New Delhi (India) in 1985. The kidney worked till 2011. I am on the waiting list for a transplant, but as I mentioned the waiting time is about 12 years in Germany, I have about 2 years to go before I get a kidney.

One other thing i am going to look into is talking to a psychotherapist who specializes in pain therapy. I have contacted a psychologist in Berlin (Germany), where I live. He will be getting back to me soon. Not sure what kind of therapy this is and whether it will make any sense.

#4

You are dedicated to your health and that can be seen. The issue appears to be related to physical limitations. 1200 is a very low volume fill. Extraneal is hopefully staying in a minimum of 12+ hours for best results. Extraneal is linear in its cleaning power starts usually after minimum hour 8. Between 8-12 hours is the best fluid removal and cleaning.

If I were your nurse I would recommend having the surgeon evaluate any changes of physical barriers to fluid removal. The pain is coming when you have the negative UF and a carry over from each exchange/cycle.

What are you BUN and Cr? Are you passing Kt/V?

#5

Hi Josh,

Your assessment matches my own intuition: I think I don’t have the capacity to hold much fluid. Maybe this is because I was already transplanted once, and there must be some reduction in space available as a result of that? My father’s kidney was removed last year due to a possible infection.

Regarding Extraneal, since last week I have it in me only from 7:30AM to about 4PM because I replace it with 2.27% at 4PM manually on doctor’s orders. I assume the doctor knows what he’s doing, when he asked me to remove Extraneal at 4PM and replace it with the 2.27% solution.

Creatinine is 14.77 mg/dl. Urea is 136 mg/dl. I don’t know the Kt/V. I forgot to mention an important thing: I have no urine output at all since 2012. Through PD I can remove 1.5 liters on average every night.

There is no way I can convince my doctors to evaluate physical barriers to fluid removal. Their position is: either I have to figure out how to put up with the pain and discomfort, or they can switch me to hemo. My shunt operation is already planned for next Friday (29 Jan), but I can cancel it if I decide against going for hemo.

But if too little space in the peritoneal cavity is a problem, it seems it is the right decision to switch back to hemo. I’ll think about this some more. Thanks a lot Josh; this conversation has been super helpful.

#6

My suggesting for you are the following: Get a fistula as a back up if your problems with your stomach does not get better they will end up putting a Cather in. If you get a infection it will cause a delay in your kidney transplant. Be aware if if the kidney transplant fail you and i hope it dose not you will be ready with out delay to go back to HDD. If you get a fistula please let me know. Go to the ask the expert tap and i am the cannualtion expert

#7

Thanks Stuart. I’m still thinking about it, and will decide tomorrow after talking one more time to my doctor.

I’ve had a fistula for 9 years, I lost it last year due to a sepsis. I have been self-cannulating for 8 years. Hemo worked fine for me (I work full time) as long as there were no infections of shutdowns. Once those started, it was downhill. I’m just afraid of a re-run of all those problems.

What is the probability of success of a fistula operation? They will create one on my left hand (I’m left handed) on my lower arm, along the radius.

#8

Shravan if you decide to get one let me know please

#9

Hiya I know you have decided pretty much your plan, but I’ve been on pd for 2 years , and was having the same thing…
Mine was mostly because I didnt let my line prime property and air was in the tube to begin with, this causes quite allot of pain and difficulty breathing, sometimes pain in the shoulders too.
I know u may have already thought of this, but I thought I’d mention it just in case. All the best

#10

Thanks Sarah. I am always careful about the priming and am very sure that the patient line is properly primed each time. Also, because the first thing the system does is empty out my abdomen (the dialysis ends with a 1 liter fill of Extraneal), it will draw away any air in the tubing anyway. I also talked with the training nurse, she says that if the system has air in it, an alarm will go off.

The only thing I can think of now is overfilling. How can I determine whether I am getting overfilled? How do I diagnose this problem? I would have thought that overfilling would mean that my weight would keep going up and up? But the weight is pretty steady.

#11

Yes, I am going ahead with a fistula next week. However, I still have to get through six weeks of PD after next week, before my fistula is usable. So I still have to solve this pain problem somehow.

#12

Overfill has to do with the max stretch of your stomach, that fluid still gets removed when you drain, it doesn’t stay in you to add weight.

The easiest solution is a tidal setting on your machine that tracks the carry over from each exchange. The way I would test the max peritoneal volume would be with manual bags. You could essentially fill lying flat until you felt discomfort and figure your max membrane fill volume. Then if you knew how much you ultrafiltrated on average per exchange, it would be (fill volume per exchange)x+UF= (For example 2500cc) Max peritoneal membrane volume. You could then reduce your x (fill volume per exchange) and find out that 1200 per exchange needs to be reduced to 1000 based on your rate of UF.

I have extraneal only patients who fill with 2500 and UF 1200 a night! Their drain volume is 3700cc and that is their max peritoneal membrane dosing. Yours may be 1900 after 1200+UF.

#13

Thanks Josh. I will try to figure this out.

#14

I checked last night what the UF was when I felt that my stomach was too full. I think my limit is 1700 ml. I’m waiting to talk to my doctor to reduce the volume to 1000 ml per cycle, to see if that helps.

#15

ok call me at 573-826-8237 about your fistula

#16

Josh, I did PD last night with 1000 ml (9 cycles over 10 hours). It worked really well! I wasn’t woken up at 3AM usual feeling too full. Also, no pain in ribs this time. I will try it again tonight to see if I can replicate the effect; it could be my imagination. My UF was just fine, at 1700 ml.

Josh, can it happen that one develops a lower tolerance over time? I have been doing PD since June 2020. Why would I develop a low volume months into PD? Also, my doctor says that I already have very low volume, 1200 ml per cycle; he didn’t believe that going lower should matter. He said most people have 3000ml or more capacity, so I am unlikely to be over-full with an initial fill of 1200 ml.

#17

You can have adhesions or potential wrap that causes pain. I just had a patient get a revision this Wednesday. The surgeon removed adhesions and adjusted the cath placement. She no longer had drain pain! That was great.

I agree with the volume 3L+ On average for volume before pain.

I am not sure how things work in Germany, but if it were my body I would be calling another surgeon or Nephrologist if you really want to stay on PD 🤷🏻

#18

Another follow up, did you say you are completely without urine output now?

#19

Yes, completely without urine output since 2012 or so. I started hemo in Nov 2011, and switched to PD in June 2020, due to a shunt infection that led to the shunt being shut down. 1985-2011 I was living on a transplanted kidney from my father.

#20

No, I can’t switch doctors. I have already switched once (in 2013 or 2014 or so).

However, I am pretty insistent; and although they are quite fed up with me, and ascribe all my problems to psychological issues, they do act once I get insistent. My main doctor is rather uninterested, but there is a second one in the clinic who engages with my questions and helps me. It was this second doctor that responded to my request to change the volume. I will discuss your suggestion with him, but I am going ahead with the fistula operation. My goal right now is to get through these coming 6-7 weeks till the fistula starts working. This PD has really left me in a stressed state; I work full time (I’m a university professor) and this whole drama has really caused a lot of chaos in my working life. I just want to get back to my work. With hemo it was all fine, I was leading an almost normal life. With PD it has been one thing after another (although I might be misremembering this, because the first two years of hemo were a mess for me, learning to self-cannulate and the blood-baths that I would cause).