My father started on PD in late December and has been experiencing very painful fills. He has no problems draining, but when he begins to fill, the pain is very bad. He has had an x-ray and just today, a CAT scan. Hopefully, he’ll find out next week what the problem is. Anyone else experience this? Nurses and docs are stumped.
Im wondering if what your referring to is brought on by the bags being too cold. Does your father warm his bags up by using a heating pad? I know this causes cramps. Not sure if that helps you.
He warms them for a few minutes in the microwave - just enough for a comfortable temperature.
You didn’t say if your dad is doing CAPD (manual exchanges) or CCPD (using a machine). What does the pain feel like? How long does it last? Does it help if he changes position (e.g., from his back to his side if he’s in bed, or leaning one way or another if he’s sitting up). The better a description he can give of exactly what’s happening, the more likely his care team will be able to help him. Sounds like the X-ray and CT scan are a good idea–there might be a problem with the position of his catheter.
I found one abstract from Yale in the published medical journals on pain during fill with PD. They recommended something called “Tidal” PD, which uses the machine to do lots of smaller exchanges (I think!) instead of a few big ones. So this might be an option if no cause is found for the pain. Here’s what it said:
1: Adv Perit Dial. 1999;15:125-6.
Tidal peritoneal dialysis to achieve comfort in chronic peritoneal dialysis patients.
Juergensen PH, Murphy AL, Pherson KA, Chorney WS, Kliger AS, Finkelstein FO.
New Haven CPD, Connecticut, USA.
Patients with end-stage renal disease on chronic peritoneal dialysis (CPD) can usually tolerate continuous ambulatory peritoneal dialysis (CAPD) or continuous cycling peritoneal dialysis (CCPD) without abdominal discomfort or pain. In some patients, pain or discomfort occurs with complete drain of the peritoneal dialysis solution or upon initiation of dialysis filling when the peritoneal cavity is empty. We report on the use of tidal peritoneal dialysis (TPD) as a modality to alleviate this pain. Of 136 patients in our CPD unit, 18 (13%) were complaining of pain with complete drain or upon instillation of PD fluid. All were placed on TPD after other causes for abdominal pain were excluded. Six patients were placed on 25% TPD, and 12 patients on 50% TPD. The mean Kt/V of the patients on TPD was 2.46 +/- 0.68. With TPD, all patients had complete relief of abdominal discomfort. Patients who develop abdominal pain with complete drain or fill when the abdominal cavity is empty would benefit from TPD and be able to continue with CPD.
PMID: 10682086 [PubMed - indexed for MEDLINE]
He is using CAPD (manual exchanges), but also tried a cycler yesterday with the same results. He has tried lowering the IV pole when he is filling, reclining, lying down with no relief. The pain seems to start a few minutes into the fill and lasts for approximately 10 minutes after he has filled. My father is not one to complain about pain - this is the worst I’ve seen him.
Thanks for the advice on Tidal PD. I’ll certainly talk with him about this option if they can’t detect his problem.
donnette - just wondering how your Dad is doing. And what caused the painful fills? Let us know what the Doctor’s have said. Hope he is doing well.
My dad is scheduled to see the surgeon who put in the catheter on Thursday. I’ll keep you posted as to the findings. He’s hanging in there, but absolutely dreads the exchanges - hopefully, they’ll be able to do something for him.
You said your father has had x-rays and CT scan. Have they evaluated the catheter length and placement? Has he tried tidal PD?
Before going to the surgeon’s office I’d suggest that you and/or your dad make a list of questions to ask and notes about his symptoms in as specific terms as possible. Here are a few I’d suggest:
– where it feels like the the pain is (high/low, which quadrant of the abdomen)
– when it happens and how long it lasts
– how severe it is on a 10 point scale from none to unbearable
– what makes the pain better or worse if anything
– how the pain has affected his desire to do his dialysis exchanges (including how many treatments skipped – be honest)
– what your father has tried already and how that worked
– how much the pain affects his lifestyle and quality of life
Some people have a high pain tolerance while others have a low one. You say he’s not a complainer. Be sure to tell the surgeon this. Doctors can’t know their patients as well as they or their families know them. I’ll look forward to hearing what you learn from the surgeon. Good luck!
My dad went to the surgeon on Thursday and nothing could be determined with the CT scan. The pain is quite unbearable and, Beth, you hit the nail on the head, he just doesn’t want to endure it anymore.
Yesterday, he had a perma catheter(?) put in for HD and also had dye inserted through his PD tube to see if there is anything they can detect that the CT scan and xray did not. We’re waiting to hear the results of that test.
He has been set up for hemo starting on Tuesday. He has done hemo briefly before he started PD, so he is aware of the experience. Unfortunately, PD was a good fit for him, but the pain was just too much. Maybe something will come of this last test. Thanks for all your concern and advice. It is much appreciated.
I certainly hope that the dye study shows something that can be done so your father can return to peritoneal dialysis. I’m sure it has been very depressing for him living with pain every time he did dialysis. There is a social worker at the dialysis clinic who is trained to help patients cope with changes that come with kidney failure. I hope he takes advantage of this resource.
You say that he got a permacath for hemodialysis. I hope that if he is going to have to stay on hemodialysis, that the doctor will do vein mapping and evaluate him for a fistula or, as a second choice, a graft. Although patients like catheters because they don’t need to have the needle sticks for dialysis, catheters have the most complications and patients are at higher risk of getting infections, being hospitalized and even dying with them. Grafts have more complications than fistulas which are the type of access recommended for hemodialysis today.
If he chose a catheter because he’s afraid of pain from the needle sticks, he can numb his arm with a topical anesthetic such as Emla (prescription) or Topicaine and Less-n-Pain (non-prescription and cheaper) 45 minutes to an hour before treatment, wrap his arm, and when he gets to dialysis, wash his arm thoroughly to remove the anesthetic. I’ve heard that the numbness produced by these products relieves needle stick pain. Another thing that patients with a fistula say helps with needle pain is to use the “buttonhole” technique for needle sticks. You can read the hemodialysis patient message board and see what patients say there.
when i first started out on capd it really hurt in my testicles i would keel over in pain its the catheter bouncing round in there try laying down i found that helpful
Do you still have to lie down or did your body get used to having the catheter there? Although I’ve heard of male patients having a hernia that let fluid drain into the scrotum causing pain, I haven’t heard of testicular pain just from the catheter. Is your catheter the right length?
donnette, for one thing you SHOULD NOT be warming the solution bags in the microwave. Secondly, you should have received a heating pad with your initial supplies, PLEASE use it as it suggests, or your dad will continue to have very painful fills. If he is on CAPD (manual exchanges) place the solution bag within the heating pad, and wrap same with a thick towel so as not to lose the heat, it should take about an hour and a half to two hours if the heating pad is on high, this will save your dad SOOO much unnecessary pain and hospital visits. The other alternative is to switch to CCPD, which requires the machine, which automatically warms the solutions for you so there is doubt as to the temp of the solution. My husband is a CCPD patient and we are completely satisfied with this type of home dialysis, any other questions or concerns please respond. thnx
My husband does capd and has found that keeping his tubing from the machine on a rug and covered with a towel keeps the fluid at body temperature. Even though the bag was warmed up it would cool off by time it reached his catheter. His Dr. suggested keeping about 500 ml. of fluid in through-out the day because a dry cavity can become extremely irritated and highly sensitive.
My girlfriend Mandy is having pain during filling as well. It lasts awhile. Any suggestions or reaaons. It seems similar to the first persons question.