Need for better PD Patient Care in Hospitals

I am still in the midst of a concerning issue that I discovered when my PD catheter clogged. After alerting the nurse on call, I was asked if my fluid was cloudy (No) but I was only draining about 50% of what went in, with cramping in my upper right abdomen. I was on vacation but would be home a few days later and no further instructions were given other than checking in with my PD team when I returned.
I returned and soon found myself in a limbo situation where the PD Nurse recommended going to the local ER, but not much other recommendations were made, so I headed off to the ER. By this time, I had gone over a week without dialysis but kept things in relatively low gear with limiting fluids and most of my appetite had disappeared. I was seen fairly quickly and the ER doctor came in and asked me the reason for my visit. After telling him the series of events that brought me here, he looked at the catheter hanging out of my belly and asked me what that was for. Strike 1!!
I spent the day in the ER without any food or water, with a few blood tests and an xray. The catheter clearing drug was tried, but the young nurse had no idea how to administer or even how much to administer. I asked if she was going to add dialysate, which was a new term for her. Strike 2!
After 10 hours, I was told to see my doctor and was released. My PD nurse was adamant about going to a larger hospital on the outskirts of Pittsburgh. A UPMC affiliated hospital has a much larger base and I spent the 1st 9 hours in the waiting room. I was moved to a small ER cubicle and spent the next 26 hours in there without food or anything to drink. After 36 hours or so I was transferred to a regular room but still had no treatment and discussions of transferring me to another Pgh hospital, although I would have to repeat the ER entry as a direct admission wasn’t possible.
After 2 days in the room, I finally met with the hospital nephrologist who scheduled a hemoport, which was put in on day 4. I had 2 hemodialysis treatments and was discharged on day 5. I went to HD 3x weekly while I awaited an appointment with a surgeon who could address the still non working PD cath. A little over a month was scheduled for the appt and then we would go from there. By good fortune, a slot opened up with the original surgeon, who found the cath had wrapped around my intestines and also created a pocket of SA infection. He repositioned the cath and I am currently doing antibiotic therapy and I’m resuming PD this evening.
My whole reason for this speech was to address the very apparent lack of knowledge that most hospitals and healthcare providers seem to be missing. I developed peritonitis from this incident although when the SA was introduced is unknown. If it had perforated the bowel, the outcome wouldn’t be as rosy. The PD patient often feels like nobody really has their back, or the knowledge to help those when they need it most. I felt very alone for most of my hospital stay as I never had a clear sense of direction or treatment. I wish more professionals would communicate with each other when it comes with cases like mine where several different departments are involved. Fortunately, I am pretty knowing regarding PD issues, but without my help the outcome could have been much worse. Saline solution is NOT a substitute for dialysate. Strike 3!!

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What you experienced should never happen to anyone. It’s lucky that you survived without dialysis for that length of time. You must have some natural kidney function. The take away message from your experience should be a challenge to do a better job educating hospitals ERs about PD. Thanks for sharing this eye-opening experience with us.

Just curious…Did your nurse suggest that you contact your nephrologist and if so, what did s/he do?

I too had a situation in the ER and hospital. I had to explain to the ER doctor what PD was as well as Extraneal. NO ONE understood that I had 1000ml in me despite my many explanations to each person who came in my room. It wasn’t until a nephrologist came in.
It was a blessing that I was awake and lucid during my time in the ER.
Fortunately the hospital was able to perform manual dialysis while I was there for a week. Tho, several times the nurses did not prime and I was left with severe shoulder pain for hours.
All in all, I was fortunate that I recovered and had no ill effects from my stay. It was just very scary of the lack of knowledge and unwillingness to learn from the patient.

I gave them my nephrologist’s name, which was a regular Dr at the hospital, but they mis-understood the name I said and referred it to a Dr I was unfamiliar with.
On a side note, now that my PD cath has been repositioned, I once again feel the occasional twinge in my nether regions. It is my feeling that the cath migrated within a month of insertion, as I had flank pain. The time period for an occlusive pocket to form isn’t overnight, so I’m wondering if the cath had moved more than a year ago. It would also explain why I drained best on my right side, and often fell short of the 70% of recovered cycle the machine expected, if I laid on my left side. I need to find the original xray from when I had the pain and the Dr finally ordered the xrays. I never heard anything more and the Dr has since retired.

If you know where the x-ray was performed, I’d suggest you request a copy of the report and image which you can share with your current nephrologist and if necessary with a surgeon who is experienced in addressing problems related to PD catheters. Here’s a website from Fresenius for professional education about catheter problems.

The biggest problem I see is the reluctance or inability to work with non-partnered doctors. The cath was placed by the recommended (By Fresenius) Dr and it was good initially. I had an Xray taken about 3 months post cath placement but I can’t seem to get a copy of the XRay. It was done for my current nephrologist’s predecessor, who retired. I will try once again with my current Nephroogist to get a copy of the film, which should be in either my personal folder or in the previous doctor’s records.
I’m not looking for legal actions, I just would like to see a smoother flow of info between my different doctors who might not be associated with my preferred hospital. Often tests are ordered by my nephrologist, which are referred to other doctors for review… and so on. The information that is ultimately discovered often doesn’t get seen by the original Dr who started the whole process.

If the x-ray was done at a hospital or radiology center, you could contact that place and request a copy of the x-ray report and the image that you could share with a new surgeon or you could ask for the x-ray report and image to be transferred to the new doctor/surgeon. You’d probably have to fill out paperwork either way.