View from the Bed: How to Cope with PD Cycler Pain
A few months ago, I wrote a post about improving PD retention. Having seen many Facebook threads over the years across various groups, this time, I thought it would be useful to do a deeper dive into the issues of pain related to use of PD cyclers, to help clinicians understand how this pain affects patients and gather the tips PD users found helpful.
DRAIN PAIN
By far the most commonly-reported (and perhaps severe) PD cycler pain occurred during drains, particularly the first and last drain:
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“I laid on the bed just sobbing in pain. It’s hard to explain how bad it hurts at times.”
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“A hot knife being inserted into my lower parts.”
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“I woke up in tears 3 times last night. I am over being woken up every hour and a half. It freaking HURTS!”
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“It felt like the machine was sucking my guts out.”
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“It’s exactly like period pain initially. Then it feels like a tiny, powerful little bird pecking at my insides.”
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“Drain pain is one of the worst pains I’ve had! I’m almost 2 years in and set an alarm to wake me up a few minutes before every drain, because it sucks literally to be asleep and all of a sudden—WHAM—wake up thinking I’m being stabbed, and realize it’s just the drain cycle. I wanted to fight my machine.”
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“It’s like that miniaturized submarine [Fantastic Voyage] trying to get out.”
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“That’s why I’m on hemo now.”
Some patients reported wishing they’d been told that pain could occur, so it wouldn’t have caught them by surprise—and so they could make a more informed modality choice.
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“I was looking into PD and asked the nurse and ___ rep if there was any pain associated with it. Can you believe they both said “No”?! Liars!!! I expect the truth from my healthcare providers.”
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“Overall, I’m glad I went this route. I just wish it hadn’t been presented as ‘an easy, painless option.’”
A number of strategies were proposed to deal with drain pain, and I’ll list these from the least to most invasive.
Wait and See
One clinician noted that, “The cath is simply grabbing on to the tissue once all fluid is drained. Men also have a nerve ending in the bottom of their peritoneum that makes this so much worse for the first few months. I’ve seen grown men sit and cry it hurt so bad, but it does improve and a lot of times go away—usually by 4 months, but can take up to 6.” Personally, I’m not one to tolerate severe pain for 4-6 months—and this attitude may explain why people stop using a cycler for PD. (I also question whether men have different nerves than women.)
One patient’s wife also contributed, “He did have drain pain for the first month, but his body got used to it.” Since he wasn’t the one responding, I have to wonder.
Adjust Cycler Height
A relatively easy fix is to raise or lower the height of the cycler relative to the bed to find the “sweet spot”:
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“Keep the machine even with your bed. Mine was way too high for the first week or two, and then we lowered it.”
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“My fiancé had to raise his cycler somewhat higher than the bed. Now it’s mainly just the last drain where he has pain.”
Avoid Constipation
Patients noted that, “You can poop every day and still be backed up.” “Make sure your bowels are working well, and that will help the PD drain pain.” Home Dialysis Central has a Life@Home article about Constipation with a step-by-step approach and great tips.
Change Position
Some reported that a sort of “dance,” or shimmy, or changes to sleeping position helped to reduce—or even eliminate—drain pain.
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“I just had to lay on my left side, and it drains just fine.”
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“Lean to the left. Lean to the right. Stand up, sit down, drain, drain, drain!”
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“My doctor told me to change the direction of the extendsion, and it worked like a charm. Now, I tape the catheter down while sleeping.”
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“I massage my belly.”
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“I would pretend I was doing the hula hoop on my last drain. Dancing and gyrating my hips made a difference.”
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“I find sitting up helps.”
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“I would bend my knees toward my chest—think period cramps—with a heating pad on my back. Sometimes I slept with my legs elevated on pillows.”
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“Get on your hands and knees and sway from side to side and back and forth.”
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“My husband sleeps with a body pillow. He hugs it between his legs when the drain starts. He told me it helps a lot.”
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“I lived with a heating pad under me every night. I always had it on low, and when the pain would increase, I would turn it up, and my husband would gather pillows for under my feet.” (NOTE: Heating pads can cause burns.)
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“I started sleeping on the couch. Being a little angled/wedged in made all the difference in the world.”
Ask for a Prescription Adjustment
Various tweaks—from Tidal settings to slowing the drain by occluding the tubing—made a difference for some:
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“Tell your nurse. It takes a while before your prescription is perfected.”
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“Your doctor can set the machine so it will leave a small amount in (Tidal), so it’s not pulling you completely dry.”
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“Talk to your doctor about the pH level of your fluid.”
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“If the pain is unbearable and it has taken too much fluid off, you can bypass the last drain when you get the big tugging.”
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“Talk to your nurse about it. Sometimes if you close the white clip for a minute, move around, then open the clip again, it will feel better.”
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“I pinch my line for a second and it will ease up, and just repeat a few times.”
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“I pinch to stop and start the flow. Do it fairly fast. It helps make the tip of the catheter jerk a bit and kicks it away from what it’s pulling on.”
Adjust the Catheter
The most invasive approach to addressing drain pain—short of a switch from a cycler to manual exchanges—is to move the catheter.
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“One thing you can ask them to do is an ultrasound while you fill and drain. Sometimes this way they can see a problem that only appears during your treatment.”
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“It could be the catheter is up against the peritoneum. I had to get mine adjusted a time or two.”
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“They can reposition a catheter using a guidewire (rather than a surgery). It’s best to do this ASAP before it settles into position.”
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“I had to have two surgeries to get it right.”
FILL PAIN
Fill pain is discussed less often than drain pain—but is no less aversive:
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“I feel like I am going to explode when filling.”
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“Mine was so bad I had tears running down my face every time I filled. I called my bedroom the ‘torture chamber.’”
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“I feel like I am going to burst for a few minutes on the first fill, then it all finds a spot to disburse around my cyst-riddled very large kidneys. Next four fills, no problem.”
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“I had the worst pain while filling. It’s not similar to drain pain at all. Feels more like I got punched in the crotch.”
Various remedies were tried. A change of pH (by injecting a buffer into the PD bags) was not mentioned, but is also reported to help, though is a short-term solution due to the increased risk of possible contamination.
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“When I had pain during fill, it helped to recline or lay down. Also, I would stop for a minute and restart, and that helped.”
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“Temporarily, I’ve closed the valve to have a break from the pain. I’ve also tried several positions. Didn’t work. There are times that I wake up from it.”
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“I was told that it’s just part of PD. Nothing they can do. I try to not to eat too much at night. That seems to help.”
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“If my fluid is not the exact temperature that I like, it makes my fills cramp bad!”
AIR IN THE LINES
The shoulder pain that can occur when air is insufficiently flushed out of the PD lines is legendary among PD users:
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“It is the most Godawful pain. It’s impossible to do anything productive.”
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“The worst shoulder pain I have ever felt. I cried all night in pain.”
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“OMG, it’s killing me so bad. I have to drain and stop treatment.”
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“I can hardly get out of bed because of the shoulder pain. We are talking 10 out of 10 pain. Went for a little walk today and I cried from pain the whole time.”
Fortunately, many have found solutions that made a difference.
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“I lie down with my hips up on pillows, so my exit site is higher than my shoulders. The air bubbles migrate up toward my exit site in the first few minutes of drain. Once the bubbles are gone, I can lower my hips down.”
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“I lay down completely flat and raise my feet in the air. It works fairly quickly, but I stay lying down for 30-45 minutes to be sure it’s gone.”
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“I made big arm circles (like a windmill) and I swear it helped, and that I could hear little escapes of air.”
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“My son would vigorously rub my shoulder and I would rotate it. That seemed to work it out a lot quicker.”
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“I bought a hand-held heat massager and used it this morning. It took the pain away, and I didn’t have to wake my husband up crying because I was hurting.”
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“I was miserable for a week! I put a warm towel on my shoulder, and that helped a bit. I know check the machine and prime 2-3 times.”
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“Clamp off any unused lines really well, so faulty or loose connections don’t let air in.”
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“I bleed the air out of my bags by standing them up, and then the air gets sucked out during priming.”
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“Without a day dwell, the cycler can flush back on the first drain and any air pockets in the line can back-flush.”
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“I had this really bad. I would prime the lines twice, and nothing helped. Finally, I talked with my nurse, and since my clearance was great, we changed my first fill to a lower amount—just 10 mL. This was a game-changer for me!!! We started this a week ago and I have not had any right side shoulder pain since!”
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“Downward dog helps. I do it during a drain.”
CONCLUSION
Drain pain, fill pain, and shoulder pain from air in the lines are very real day-to-day issues for some who use PD cyclers. I encourage PD staff to ASK patients if they have pain, and offer real solutions as one way to help improve PD retention.
Comments
Hagen
Sep 12, 2023 4:08 PM
Shawna Nuckolls
May 28, 2023 12:07 AM
Jenn Ravert
Jun 01, 2023 12:49 PM
Lorraine Jones
Nov 16, 2022 7:43 PM
Beth Witten
Nov 16, 2022 7:54 PM
Tue Wincentz Boas
Sep 17, 2022 3:48 AM
It helps me to raise my upper body for the infusions, but I dont sleep well and after reading this thread is inclined to get my catheter adjusted/replaced or go manual.
I value my sleep too much.
Joanna
May 10, 2022 10:47 PM
We are using BAXTER HOME PRO CHOICE. As of this time, settings are as follows:
Tidal/2000ml/5cycles/Dwell Time 1:35. Last drain 600ml.
What were you experiences to improve this drain pain. Did you guys raise your machine or lower it?
Beth Witten
May 11, 2022 11:09 PM
Myrna Winslow
Apr 22, 2022 11:52 AM
Stephanie
May 28, 2022 7:18 PM
Dori
Apr 22, 2022 1:49 PM
Ms.Dale
Dec 01, 2021 2:04 AM
At least I'm not alone. My PD nurse was not focusing on my comfort.
Ms. Dale
Jun 11, 2022 1:19 AM
#2. Had 2nd catheter put in. I didn't know that catheters come in sizes. I'm petite and have a short torso - so the 1st catheter was sucking on my lower pelvic area (genitals and rectum ) and causing severe pain during every drain.
The new catheter is shorter, had less coils and I have had no pain whatsoever since the surgery. I'm grateful....
Duayne
Aug 03, 2022 11:57 PM
First off, congrats! I am so happy that you were able to resolve your pain!
My son (15) has been on PD going on 4 weeks now. He has drain pain daily with the 1st (always) and last (most days); sometimes very severe. He is on Tidal and I have the ability to bypass, which I use as needed once the drains come to a near stop. We have been thinking about asking our team about relocating his catheter or shortening it. Our biggest ?/fear is that if he has another surgery, how long does he have to wait until the catheter is healed enough to use it? We want to avoid a HD catheter placement for short term use.
My question for you is, did you keep the 1st catheter in while you had the 2nd? If not, how soon could you use the 2nd and what did you do in the interim?
Thank you, your story gives me hope!
Duayne
Dori Schatell
Jun 13, 2022 1:48 PM
Beth Witten
Jun 11, 2022 3:24 PM
Dori Schatell
Dec 01, 2021 2:06 PM
Kellie
Apr 30, 2021 3:07 AM
Has anyone else have this problem?
John
Jun 03, 2022 6:51 AM
Jackie
Mar 26, 2022 5:06 PM
Dori Schatell
Apr 30, 2021 3:10 AM
Dori Schatell
Oct 29, 2020 6:07 PM
PG
Oct 29, 2020 4:10 AM
Dori Schatell
Oct 29, 2020 1:37 PM
PG
Oct 29, 2020 5:11 PM
Adella Thorne
Oct 15, 2020 9:28 PM
Rachel
Aug 18, 2022 12:03 AM
My husband also has had many alarms for slow drain. He sits up and moves around but we’re up like 2 to 3 times a night and that’s tiring. We’re only in our first week and the drain pain is horrible for him. I’m going to ask our PD nurse about the tidal. We were for warned of the drain pain. My daughter sent us this webpage and I am so glad. So much info here. Thanks to all
John Agar
Apr 30, 2020 10:31 PM
Gale Schulke
Apr 30, 2020 10:03 PM