Pain pkd

[Beachgirl32]

I has my pd catheter put in last Friday. I have not had much pain around the area. But m back pain is really bad. I always get back pain with my polycystic kidney and I used to take a hot soak to ease the pain, of corse can’t do that anymore. I miss my hot bath😱 I have only had to take one pain pill with surgery but last night my back was unbearable I had to suck it up and take a pain pill . So that two of the pain pills I have taken when I said I will not take them. In the daytime I am fine but about 2 in the morning the last couple of days the back pain it right in the flank where I always had the pain from my polycystic kidney . My brother told me he never had pain in his back from pkd. Why do some of us have such pain with it and other don’t . I don’t know what to do beside a heating pad now oh how I miss my bath . I hope when I actually start dialysis the back pain does not get worse.

Sorry for the vent. I’ really haven’t slept I just needed to express myself with other who understand.

[LeesKees_NJ]

Hey Beachgirl32,

I have PKD and I get flank and back pain too. I also have polycystic liver disease. The crowding issue from them both has made me very uncomfortable. Everything inside me is squished, kinda like when your 9 months pregnant and the baby is taking up all you gut space. Then you also have the episodes of bleeding or rupturing cysts which also give much misery.

I do hemo 3x a week but I still have kidney function so my sessions are short; 3 hours. They don't take much fluid it is mostly to clean my blood at this point. My transplant team suggested removing my kidneys 2 years ago to make room for a transplant and get rid of my pain but I said no. As long as we can manage the pain, which my tolerance has gotten much higher, I want to keep them until they no longer function or the pain becomes intolerable. There's room for a kidney in my lower left abdomen if one becomes a available in the meantime. I do not have any fluid or dietary restrictions because of them. If they came out my life would be very different.

I know we dialysis differently but understand your pain. I hope that being a PD patient doesn't make it worse. I wasn't even a candidate for PD because my kidneys are so enlarged. I can't hold that much fluid, I just don't have the room. I hope the coming days get easier. Sending positive energy to you

[Hidden]

I am sorry you are going through so much discomfort. I find a heating pad helpful. Perhaps this would be an alternative to a warm bath. If pain persists or worsens or you feel other symptoms consider the possibility of a kidney infection. I have had a few of those in my time. I wish you better days...😊

[horsie63]

I've been "sleeping" in my recliner with a heating pad. I miss the hot baths too and I think I might kill for a shower. I've got some sort of mucus thing going on with a post nasal drip so bad I can't lay flat or even on my side without it choking me.

I feel for you though, I can take mucinex and get some sleep but back pain is a whole level of nastiness. Can you use a heating pad on it to help. Maybe some cream? When I was having my SI joint issues I tried CBD....didn't help the pain but I was able to sleep good.

I hope you find relief soon.

[RonZone]

Oh boy have I been where you are, except my back stuff didn't start till I stated manual PD's if you remember my posts. Now I have had some back pain off and on for several years because of what my physical therapist says is "treating my back like a jack hammer". So I brought mine on myself. There's some stuff that's supposed to be inside the pads between the vertebrae that is oozing out in my way lower back which causes my pain, so I know exactly what causes it. Now that being said, a couple of times, I've had a cyst burst (PKD cyst), and that hurt in my flank more than my back and I thought I was having a baby during that day. But it eased up after a day and then went away after three days. When I was having the back pain from manual exchanges, I went to my regular doc, the neph, my urologist and finally to a back surgeon to see if I could discover the true cause of my pain and why manual PD dialysis would cause it. To be honest, they never really came up with a good answer. Hopefully you can talk with a back surgeon and find out at least what might be causing yours if they can do an MRI or cat scan or something to help you figure it out. Don't live with pain if you can find someone who has an answer for it. Oh my regular doc sent me to a surgeon to do an epidural, but by the time the appt rolled around, I had stopped manual PD and the pain had gone away, so that surgeon said he didn't want to stick a needle in my back if it wasn't hurting. I was ok with that plan! So talk to your regular doc, a back surgeon, whoever to help you figure out what might be going on and if you find out, report back. I know you are exhausted from all of that. I remember ALL TO WELL how that felt! I can definitely feel for ya! Sounds like we're sorta in the same boat now, PD catheters in place. I'm just a tad ahead of you and horsie63, but not by much because of all the delays I've had getting on the cycler.

[Beachgirl32]

thanks you all for your insight . I know it not a kidney infection. I know this is how my body work with the polycystic kidney pushing against other organs. I would get this pain from time to time even before I gas the pd port. The hot bath ease it so much I would spend a long time in a hot bath . Heating pad help some My back is ok right now but I know there will be a next time . My doc and I have talk about having polycystic kidney remove but he said it is a hard operation. So we decided against it.

My brother said he got in a hot tub his own every day and he had the cleanest port they ever seen. He told me don’t let them tell you you can’t get in a pool or ocean or hoot tub there been lots of research that said you can. He said a hot tub may help with my back pain. I do not have a hot tub and will be to worry to get in someone hot tub. I have 50 plus tree in my back yard no room for a hot tub. I love the pool and the ocean but I’m not sure I will get in those either my pd nurse kind of frown when I mention it she was like they don’t recommend it. How many of you with pd catheter go in pool ocean or hot tub I’m just curious .

[RonZone in reply to Beachgirl32]

No bath, ocean, hot tub or lake swimming for me. But I do plan to get in my little unground chlorinated pool this summer. Keeping my fingers crossed that no infection results.

[horsie63]

I wonder if you could with a waterproof cover? And after the hot bath make sure everything is dry and clean.

[Beachgirl32 in reply to horsie63]

no they really are against bath because you are sitting in dirty water that not sterile and can get in exit site . Even I ask about wearing bandage answer was no not even with water proof bandage.

I seen my surgeon today all look good. One question I ask is how long these catheter last his answer was depend how you take care of it it can be like 10 years he said something may be out of your control like if you get appendicitis and infection set in we would have to take it out.

[RonZone in reply to Beachgirl32]

Note, I was surprised when i went for labs last week and the PD nurse said it was time to change the transfer set that is connected to the catheter coming out of my abdomen. She said they replace that every 6 months. Didn't receive that info before that I remembered.

[Beachgirl32 in reply to RonZone]

my pd nurse did tell me when she put on the transfer set on Monday it has to be change every six months . She told me that I didn’t have to watch so close cause they will be doing that . I’m just a very curious person whatever is going on I want to know .

[horsie63 in reply to Beachgirl32]

Mine doesn't tell me anything unless I specifically ask. It's almost like I'm the only one doing PD there and it's an imposition. I've yet to get any paperwork, have never provided my insurance information. I wonder who's paying but unless they ask I'm not saying anything.

[horsie63]

Luckily I had mine taken out years ago and I've become obsessed with making sure I remain infection free. With my ALB so low and infection could easily turn nasty as it's hard to fight them with little protein in my blood.