How do you sleep on PD Cycler?

[pdlife1]

Hi, i'm a PD patient. if you are on PD how are you able to sleep? they advertise PD that you can do it at night while you sleep however, I cannot sleep. I feel like i'm drowning with all the fluid in my abdomen, in my chest cavity, ribs then there is the unfortunate drain pain. How do other PD patients sleep @ night?

[Erifre]

Hi, My husband has been on dialysis for almost 2 years, he had drain pain as well, but we discovered that there’s a cycler setting called tidal and this can be managed by your dialysis clinic (nurse) in order to leave a little bit of solution to avoid the pain. That helped my husband and since then, he has not experienced any pain. The other option is to check with your nephrologist if your catheter was placed correctly. If you just started to use a cycler consider draining in a horizontal position, and roll over the side where your catheter is, in that way you will avoid the suction that is the one that causes the pain. I hope you can solve the pain with the first option (tidal), I send you all the good vibes and will keep you in my prayers!

[pdlife1 in reply to Erifre]

I do appreciate the good vibes - I receive and welcome all positive vibes. I’m on Tidal and have had the catheter repositioned to alleviate regular everyday pain that I was experiencing. Currently I’ve had to do PD in a recliner and I do move positions and even have to lift my legs like having a baby just to alleviate pain. I’m going to get a table that’s the exact same height of my mattress to see if that helps. Thank you so much for responding.

[Hidden]

Hi PDLife. I use the cycler at night since January. Do I get a good sleep? Rarely. But, I have also been a bit complicated with a hernia that was causing a leak and then surgery. I recently had to take a muscle relaxant for another issue and have been getting a more tolerable sleep as a result. I am not recommending sleeping pills, but anything you can do to facilitate rest is a good idea. You can adjust the volume and panel light on the machine so that it is not so loud or so bright at night. This is helpful. I also sometimes sleep with earplugs because I am so sensitive to sound. I use lavender spray on my pillow to help me relax. I also take 5 mg of Melatonin at bedtime. I am on the "tidal" setting and this has largely eradicated the drain pain. As Erifre points out in her post here, the catheter can move out of place, which affects both the input and output of the solution. This happened to me. It had to be moved back into place. Your dialysis team should work with you on these issues, such as trying the tidal setting. The manual that comes with the machines shows you how to adjust light/sound. On the plus side, nighttime dialysis frees up your day, which is good, but arriving at a happy sleep medium seems to take some of us longer. I wish you the best in finding what works for you.

[pdlife1 in reply to Hidden]

Thank you for responding. I’m on Tidal and have had the catheter repositioned. They have suggested replacing the catheter for a smaller one but after two procedures I’m hesitant for a 3rd. I appreciate the recommendations but it’s mostly the drain pain and all the fluid feels like my tummy is going to explode whenever I do it at night. I’ve resorted to a recliner during the day (the whole) and the recliner helps but I still have pain. I’m going to try to get a table the s as me height as my mattress. Wish me luck.

[Hidden in reply to pdlife1]

Hi PDLife. I thought about unit height after I posted you. Unit and user need to be no more than 12 inches max of height difference. Another issue with draining is bowels. Full bowels impede the catheter. You probably know this already. I found having the full 2 liters in my tummy difficult too. When I couldn't bear it I drained out 500mL manually. This helped. I tolerate a full belly better now than I did initially. Maybe you can request to change to a smaller fill volume and see how that goes. Also, I try not to eat after supper. My digestion slowed down and my stomach is slow to empty. Too much in my stomach makes me feel awful, just as you describe. I wish you luck and a prayer. Peace .

[pdlife1 in reply to Hidden]

Thank you - appreciate your comment.

[Aloha49]

Ask your PD nurse to adjust your machine to a lower, slower dose of dialysate. I use 2.5% dextrose 5000 ml most nights unless BP goes low and then I switch to 1.5% 5000 ml. I also have it in 3 cycles over 7 hours while I sleep. The nurse also lowered the machine volume and turned the light down low so I can sleep. It seems to work for me. Also, there is a way to slightly close the catheter if cramping starts. Good luck, BB

[pdlife1 in reply to Aloha49]

Thank you I will ask. Currently I’m on 6000ml. I’ll ask see if that makes a difference. Appreciate you responding.

[Rtbird]

Hi,I have been on PD since Dec 2021. I started off with the Drain Pain as well. It takes some time for your body to get used to it. Sure Tidal will help a bit but you still have the Initial Drain (removes any fluid that is in your system without putting any fluid in). This can be painful, but over time your body does adjust. I found that standing with knees bent (almost like a catcher in baseball but more standing) seemed to help. Then after all the Tidal Drains & Fills (which seem to go by nicely with no pain) you will have the Final Drain (removes everything). This can be painful as well but again your body will adjust. I found sitting in bed with knees bent helps when the draining gets towards the end. It took me about 2 months to get over it. They originally thought I was constipated, but that turned out to not be the case. Even with my colon empty I still had some pain. My body adjusted and now not nearly any pain, mostly irritation from Initial Drain.

Alarms! I found that in order to help prevent the machine waking me up to alarms is to make sure my tubing wont be pinched during my sleep. I first tape the tubing to the bottom of my shirt (very bottom edge) and tape the Transfer Set to me middle of shirt. This helps me from pinching my transfer set tubing (which is very soft compared to the tubing from machine). I used to tape it down to my shorts but found that I would pinch the tubing way too often. Try to make sure not to lay on the tubing as well, it might slow down the draining & filling which will cause an alarm and wake you up.

Last Thing, try not to eat or drink anything at least 2 hours before doing any Dialysis Treatment. Your belly would be full of fluid and food and then adding 2 Liters of fluid to the Cavity will make you uncomfortable to sleep with. You can take sips of water throughout the night if need be (check with your Kidney Dr.). GOOD LUCK & DON'T GIVE UP!

[pdlife1 in reply to Rtbird]

Thank you so much for responding. You described exactly some of the things that I’ve had to do to alleviate the drain pain. It’s really been horrible. So much so that I’ve had to resort to doing it during the day just so I’m sitting on my recliner and I’m able to put my legs up like I’m having a baby just to alleviate drain pain. It’s only been 8 months so God willing as you say in time these pains will subside. Thank you again for responding.

[RhenDutchess123 in reply to pdlife1]

I keep mine on a cart with adjustable shelves...and I sleep on my left side which us where my exit site is, I make sure its laying flat and untangled. If you move around alot in your sleep you may consider a body pillow down your back to help keep you on your side....You also need to tell your Clinic how much pain you are ensuring, there are adjustments they can make in your Cycler Software that can help ease...Hang in there...hope things are better for you soon

[pdlife1 in reply to RhenDutchess123]

Thank you so much. It is truly appreciated.

[Blackmidnight in reply to Rtbird]

You say you weren’t constipated but they thought you were. What were their suggestions? I am experiencing this.

[Rtbird in reply to Blackmidnight]

I was offered to have the catheter removed and go on hemo instead. I toughed it out for a couple months by getting into positions that helped the pain lessen. After 2 months I did not feel as much pain. This may sound weird but I was doing some leg stretches in bed while the machine was doing it's 1st fill. Then towards the end of my treatment that say therapy session, final drain, I didn't feel any pain! Now when initial drain and end of final drain happen, it is only bothersome to the most but not painful. I started off as screaming with pain when PD started, to 2 months after with little or no pain at all.

[RhenDutchess123]

Is your Cycler sitting at the same height as your mattress ?...The pump works more efficient when it's not sitting too low or too high

[pdlife1 in reply to RhenDutchess123]

Thank you for your response. I’ve been unable to find a table that sits about same height as mattress. It’s probably too high. I’m going to have to try harder to find something to place this cycler on. The pain and discomfort has been horrible. I appreciate your response. Thank you.

[TaffyTwoshoes27 in reply to pdlife1]

What dialysis company are you using? I was on PD with Fresenius. They gave me a table when they sent the cycler. In fact, I got transplanted in Jan 2022, and when Fresenius came to pick up the extra boxes of fluid and the cycler, they left the table at my house!My fill each time was 2,300+ ml. It filled and drained 5 times (that’s 11,500 ml a night) for a total of 10 hours. I was on PD 6 years. I used two 6 liter bags on the cycler.

I thought I’d never get transplanted. I guess my best advice: never give up. Keep posting here and try to get answers. Consult with your Dialysis Nurse and Nephrologist. They’ve been doing this care a long time.

Perhaps your nurse can fill with less fluid and increase the number of times you fill and drain?

Good luck. It does get better. Have you been evaluated for transplant?

[Darlenia]

My hubby never had any drain pain while on PD not even on the first day. It shouldn't happen in my opinion. Some surgeons are better at catheter placement than others. If you think its that, make them fix it if necessary. (Our dialysis center actually told us, behind the scenes, to pick out a specific doctor to do it, mentioning issues with the others. Perhaps ask your PD nurse what her experience has been with your particular surgeon.) One can also tinker with settings (hubby never needed tidal setting) and also placement of cycler. Bottom line, PD should never hurt. That would be at the very top of our "action item list".

[pdlife1 in reply to Darlenia]

Thanks Darlenia I’ve had 2 procedures to move the catheter top so it won’t hurt. Nurse suggested I get the catheter replaced with a smaller one - just not confident to go for a 3rd procedure. My nurse is excellent and I am on tidal. I’m going to try hard to get a table that is the same height as my mattress as the previous person recommended for me. I’m just praying to God now that the Lord help me. Thank you for replying.

[Darlenia in reply to pdlife1]

I truly hope you will be pain free soon. No one deserves experiencing pain, especially on PD.

[RonZone]

I'll be starting PD next month. I'm making notes from ALL of these comments to have ready to try if pain is a major issue! Thanks to everyone who responded. And thanks to pdlife1 for asking the question that got these wonderful responses! I wish you the best in sorting this out. Wish we had a magic cure that we could pass through these pages!

[pdlife1 in reply to RonZone]

Thanks Ron. I was so amazed at the kindness of all who replied.

[Blackmidnight in reply to RonZone]

I started in may; one thing they don’t tell you is when you start training for pd at home you start at the center and then do it at home. The first month is overwhelming without them there watching you. I am in my third month and am beginning to feel comfortable doing it myself. You will get alarms, you will second guess your procedures stting up your home routine. Take a breath, stop, focus and you will build your confidence.

[RonZone in reply to Blackmidnight]

Hey, thanks a ton for that tip. I'll be using the Baxter Amia machine (that's the plan anyway) which supposedly talks you through the steps once I start using that, but yeah. I'm going to video my training sessions if they will let me so I have something to reference to memorize all the steps of the manual process which I will do for a while before switching to the cycler. PLEASE let me know if you have other info like this to pass along. Send a private message if you think of something! And really glad you're go the semi "comfortable" stage. I look forward to getting to that stage.