peritoneal dialysis

[Rip1]

I have always been curious if someone else that has tried peritoneal dialysis has had the same experience I did. I was trained and began peritoneal at home with 4 exchanges a day. The solution for each exchange was 2500ml with a 3000ml drain bag. It wasn't but a few days that my weight was increasing, the drain bag was completely full each time I did the exchange, and my fluid intake was certainly not even close to 2000ml ( the extra amount that should have been draining). I talked to the center personnel responsible for peritoneal patients and was told not to worry - it would balance out. Well after about 6 days my peritoneum hyperextended (no small amount of pain I assure you), but the other problems were to just begin. I was given two drain bags, and drained a total of 5400ml - that's 2400 extra ml that was in my peritoneum. Also the exchange site would not quit leaking fluid. I even rose every two hours at night to change the dressing, but still developed peritonitis. In the mean time I was also back on Hemo. When all was healed, after some weeks in hell, I again attempted peritoneal exchanges, and they were totally ineffective. Naturally back to good old in center Hemo.

I must say that I have always been somewhat bitter about this. I know I did nothing wrong, but who do you blame. I hope none of you have had an experience like this, but if so it would be nice to know I'm not the only one.

F.Y.I. My dialysis center is Gem State Regional Dialysis Center in Idaho Falls, Idaho and is a non-profit operated by the University of Utah.

Well I have many stories to share, but will spread them out to share you the ennui.

[ulrika]

Well Rip1, I am sorry for all you have gone through, and can somewhat empathize. I have posted about my daughters experience in another post about "pain management after surgery". She is going through hell right now. The clinic has been very helpful, and understanding until she experienced problems. Now they try to blame her for whatever she is going through. My daughter is the most conscientious person I know, and has done everything they have told her.
She was supposed to have her first session with peritoneal dialysis today, but because of her severe pain, they have sent her to x-ray. I am waiting to hear from my other daughter for the results. Honestly, I am terrified. What if the damned tube is entangled in her intestines?

Ulrika

[Rip1]

I totally understand what you are going through. It appears that no matter what knowledge you have, they assume you are wrong. I am very well educated in medical procedures relating to dialysis and other things. Good luck. If I can help, let me know. Rip1

[ulrika]

My two daughters lost it on the team today. The one daughter, knowing her sister, and what she is going through. And the other one in so much pain. To have them say that her pain is due to her own fault because she took some prescribed painkillers after 2.5 weeks of constant pain. They said that she is constipated. One nurse even had the nerve to ask her if she had taken enough roughage, even though she should know tha a kidney diet does not allow for that. My daughter knows that it is not constipation that is causing her pain.
We happen to be a family who in the last 6 years, have been dealing with 1 death while waiting for a liver transplant, another unexpected death due to hemochromatosis, and a 14 year old granddaughter who suffered severe brain injury in a horrible car accident. And now the latest, my daughters end stage renal failure.
Sometimes I wonder if we are related to the Kennedy's
We have become experts at researching everything that is bestowed upon us, so they better watch out .

Ulrika

[anja]

It is so sad that your daughter is having to endure such intense pain!  Sometimes the medical personnel just do not know what they are dealing with, so use the method of elimination (no pun intended).  When I had my peritoneal catheter placed, I got Peritonitis.  Went to the Emergency room twice in two days- never did that before- and they finally took me seriously.  I felt the pain of the infection before they could find the conclusive evidence.  It felt like there was something on the inside boring a hole right through my abdomen.  The pain was localized and extreme.  They too were hesitant to give me effective pain medication for fear of constipation, PD's enemy. I realize I am a "short-timer' compared to many here,but I have now been on PD for a year next month and have had no repeat infections.  I began with the 4 daily exchanges  and carried 2000 during the day.  I have since been so fortunate as to have use of a Baxter cycler and love the freedom that I now experience with hooking up at night and for 9 hours, many of them while asleep, I get my wastes filtered.  My adequacy runs in the high 3's and I do not have many dietary restrictions- I stay away from salt and take my PhosLo capsules faithfully.  I hope they find the root of Sandra's problem and can stave off her pain effectively.  Once she starts on PD she will be so relieved and feel so much better.  Best of luck to all of you, I'm sure this is also difficult for her sister and for Mom.  Wishing you a happier Mother's Day for all of you!

[kevno]

Sorry to hear your daughter Sandra is still in pain. The X-ray will show if she is constipated, for a CAPD patient that is very painful, i know. I know you had no choice but to give your daughter painkillers, no one should be in pain like that. But unfortunately painkillers cause constipation. It is a vicious circle. When I was on CAPD I used to take 2 senna tabs at night 7.5mg, so I would not get constipated. You are having  everything happen all at once.

I hope it gets sorted out very fast for Sandra, so she can get rid of the pain. Then get into a normal routine.

Yours

Kevno

[ginger cookie]

You wrote....
My two daughters lost it on the team today.
-Good for them!!!! in healthcare, the squeeky wheel gets the oil. You might get a frown from the team, who cares! Be adament about speaking up, the docs and nurses are in effect YOUR employees.
Regarding the nurse who asked about the roughage intake: If you haven't figured it out by now, I shall enlighten you. Any patient that has dealt with renal failure for at least a month knows by far more about it than an average nurse. It just isn't covered that extensively in nsg. school. I used to teach a renal class to new nurses about to enter practice and I'd often say: "your patients are the experts, ask them." The pt generally knows more about the disease, the purpose of their meds ("you mean those 8 Tums aren't for indigestion?"), and their treatments. PD is especially foreign to non dialysis nurses, and honestly it really blows their minds.
Please hang in there, don't ever feel intimidated, ask lots of questions, demand good care.
Bless you!