PD abdomen HUGE

[Grandteacher]

I started manual pd dialysis Tuesday and this is now Wednesday eve. Currently on 1500 ml. My abdomen is like I am six months pregnant in two days. Will that be the norm for me now? I expected some bloat but I seem to be up three sizes and hard to sit straight with knees together comfortably.

[Darlenia]

Oh my! You shouldn't be going through that level of discomfort. One can get hernias, strained muscles, and more if one is overfilled. You mention being on manuals for a couple of days now. Hopefully, you're draining properly. I would immediately call the PD nurse or the 24 hour hotline for professional guidance.

[Hidden in reply to Darlenia]

Yes, I was going to ask if he or she knows to drain after a dwell. I can remember looking like I was 9 months pregnant. I was doing 2000 ml fills and didn't drain properly one time and was awakened with close to 4000 ml in my belly. Very scary.

[Grandteacher in reply to Hidden]

Hi! Thanks for replying. I like to know how it is for others. I always weigh when I drain and have been emptying completely as well as lots of extra it has pulled out of me. They said yesterday it is because my frame is small. The drain pain is wicked so I'm so proud of you all for being to deal with that! I will have to get a little tougher.

[Darlenia in reply to Grandteacher]

Oooh noo.... My hubby never experienced drain pain; it hurts me to hear others going through that. Apparently there are two ways it can happen: negative drain pressure or catheter placement where the tip itself may lay against the membrane, bladder etc. If changing your position, prescription, or the layout of your equipment doesn't help, perhaps your catheter may need to be repositioned. In the meantime, please don't force yourself to become "tougher", you already have sooo much to deal with. Your team will find a solution for you if you're persistent. In my view, dialysis is tough enough without adding drain pain to it. Sending positive energy your way!

[bumblebee_tuna in reply to Darlenia]

Drain pain is more common in women.

[Darlenia in reply to bumblebee_tuna]

Yes, I've heard that...also, there's less pain when you're an older person, etc. But I personally don't think don't think anyone, woman or man or whether one is old or young, needs to endure that silently.

[Grandteacher in reply to Darlenia]

Thank you! Those were some of my concerns too. I have bee working with the nurse each each day right now. My drainage has been good so far- over and above my input solution. They are saying I just don't have a lot of room down there LOL. I really appreciate you taking the time to answer. It's easier to give in and phone the nurses when someone else can also tell you it's too much.

[honeybug]

😊🤗♥️🥰🙏🕊🌿🌸🦋

[RhenDutchess123]

You are doing manuel PD...do you still feel full after you drain ? Are you measuring your drain bag weight so you know you have drained completly ?.. I do PD at night on a Cycler while I sleep,, so i don't notice how big my abdominal get...but when I have to do Manuel's it is very uncomfortable...Does your Clinic offer PD with a nighttime Cycler ?

[Grandteacher in reply to RhenDutchess123]

Hi! Thanks for replying. I'm draining completely and have pulled lots of extra fluid out on every exchange so far. They told me I have a small frame and that is a contributor. I train on the cycler in a month. I applaud all of you. The drain pain is killing me. Lol

[RhenDutchess123 in reply to Grandteacher]

I am small frame too...but only use 1700 ml exchanges..they may reduce that amount after you go on Cycler...It does move your guts around..Glad to hear you will be moving to the Cycler, alot of the drain pain will cease and if not they can set your Cycler to Tidal Wave...PD should not be painful...hang in there...I have been on PD for over 3 years...Best Wishes

[Grandteacher in reply to RhenDutchess123]

Hi! Thank you for replying! Yes, everything is measured and I empty well. The training on a nighttime cycler will be in month.

[RonZone]

Gonna throw in my 2 cents worth on this topic. Lots of topics on here I just don't have the experience to comment on, but this one, oh yeah. Got the experience. Living it every day. I'm in my second year of PD. I actually flunked manual PD training. For unusual reasons. About the 3rd day of training, I started experiencing back pain when I would go from sitting to standing position. By the 5th day of training it was excruciating. And by the 7th day (on sunday), I called it quits. When I would try to stand up, the pain would hit and I would be on the floor on all fours for 15 minutes until it subsided enough for me to climb on the bed. And there I stayed for 2 days for the most part. After seeing my nurse, my regular doc, a back surgeon, and getting X-rays and MRI's it was determined I had a bulging disc in my lower back. So my nurse and I decided to just go straight to the cycler. Once i was doing exchanges on the cycler lying down, the back pain did not return. I was extremely thankful for that.

All that was to say that each person's journey through this is individual, like snowflakes, no two are exactly alike, so you will have some issues that are similar to others, some that are different.

So back to the original issues you spoke about. I, as well as many others on here, had pretty bad drain pain in the beginning. The first day of PD training, it was like it made my butt pucker! The nurses never warned me of how bad i would actually be. But I had read other posts that had talked about it. Then once on the cycler, laying down, I would roll around and move around and reposition trying to find some way of twisting my body to get the lowest level of pain. On my back was the worst. I found that laying on my left side during drains produced the least about of pain, with my knees slightly bent, but not too much. It was a LOT of trial and error on that, and I mean a lot of error.

The good news to you is. YES it will get better over time unless you've got a major catheter placement or design issue. Is your catheter one that is curled on the end like a seahorse tail. Those seem to work better than the straight ones. The nurse showed me a sample of mine so I would have an idea of what it looked like.

When i say it will get better over time, that's an up and down journey. It took about 6 months for me to be able to sleep through it all. I can still feel a bit of discomfort during a drain if I'm awake, and especially if I'm to lying correctly, but it's nothing compared to the original pain.

An the cycler alarms. I was getting a lot of cycler alarms in the beginning for the first few months, well actually they continued into the rest of last year until I finally figured out that I was not drinking enough water during the day to provide the cylcler enough fluid to remove. So I started drinking 3 - 12oz bottles of water each evening and that has stopped the cycler alarms. So watch out for dehydration, but don't overdo the water consumption, there's a fine line. What kind of cycler will you be using. I'm using the Baxter Amia. It's easy to use. Just a bit time consuming during the connection/priming stage.

Again, everybody's journey is different, but I really hope your drain pain diminishes each and every day you go along. But yeah, you're still gonna feel a tad pregnant all the time. Goes with the territory. But you sorta get used to it after a while. I started with 1000ml during manual training, boosted up to 1800 before I flunked. Then when I started the cycler, I started at 1000, but over several months I have had to boost up to 2300 per exchange, 7 exchanges over 12 hours to reach my wKt/V goal of 1,8. Your nurse will help you figure yours out over the next couple of months.

So today, I connect, I sleep, I feel no pain for the most part, no alarms, and get to stay in bed for 12 hours, doctors orders! Netflix and Amazon Prime and Pluto are my friends. Then I get up, do a final drain, disconnect and go about my day. It's just part of my new "normal" day. I pray your journey get's much easier much faster than mine. Let us know if you have other concerns. We can't offer advice, but we can offer our own experience.

[bumblebee_tuna in reply to RonZone]

Your stomach will expand over time, I started with 1500ml and now up to 2500ml after 30 months. Do be careful, if it presses very hard let them know, I did develop an umbilical hernia a year ago and had to have surgery to fix it.

[bumblebee_tuna in reply to RonZone]

7 exchanges?? Wow…

[Grandteacher in reply to RonZone]

Thank you for sharing your journey with me! Yes, I will be on a new Baxter I'm told. I'm learning so much.