New to PD - questions

[PurpleGeekGirl7]

Hello everyone,

I have recently been diagnosed with IgA nephropathy and needed to urgently start dialysis due to my GFR being less than 10. I am currently in my training for PD and had some questions:

- when you started showering with your exit site exposed, did it sting a little? Does this improve or should I return to covering it with Tegaderm during my showers?

- I have been struggling with back pain during my dwells of more than 1500ml. My RN tells me this will improve. How long will it take? From what I read, others tend to have more pain during the drain but for me the draining was such a relief. Today I used a heating pad during my training session which helped quite a bit - but I read it’s not really safe to sleep on it. Anyone tried this? What else could I do once I’m home doing it overnight if it doesn’t rapidly improve? I took Tylenol today as well which also helped slightly so it’s hard to identify how much all these changes helped individually.

- Lastly talk to me about swollen feet. This has been my major symptom and by the end of the day even walking around at home has been challenging.. How long does it take on PD to noticeably see a difference? I literally only have 1 pair of shoes (out of many) that fit. Any good shoes to try?

[LeslieK]

Hello-

I never experienced any sting or pain on the exit site when showering.

It didn’t hurt. I did use the waterproof clear plastic shields at first but the water running over it can be cleansing as long as you bleach your shower head.

The back pain sounds uncomfortable. Maybe that will improve with time or possibly positional. It’s always trial and error.

I completely understand the swelling you mentioned. My legs and abdomen were always swollen. Some improvement with the red bags but I was advised not to use them as frequently. Honestly, I was swollen the entire 18 months on PD. I may have seen some reduced swelling from time to time but not immediately. Everyone is different. I used to wear flip flop like slides with socks because that was all that fit my feet. Or hard bottom slippers. Hopefully your body will start to adjust and you will see some swelling decrease as the treatments pull off fluid nightly. Sometimes I would pull off 6-8 pounds per night and sometimes I would gain 5 pounds back that same day. 1500 is a good ml dose. Anything more always caused me pain. Write down symptoms, communicate with PD nurse and make sure you’re connecting with them. I switched centers 3 times till I felt comfortable with my PD team. Best of luck. Utilize the on call nurse line and also the machine customer service line.

[PurpleGeekGirl7 in reply to LeslieK]

Thanks for the comments. I hope the back pain is positional and therefore when I'm in bed it will be better. Getting my machine next week so I will see.

As for shoes, did you work during PD? I have one pair of casual shoes that fit. Flip flops won't work for going to work on the days I can't stay remote since I work in the hospital and need to go to clinics and labs. I hope this will improve too so that I could potentially wear grown-up shoes again when needed for events.

My RN is behaving like 1500 is the bare minimum. After my torture session of 2L on Monday, she agreed to go back down to 1600 for my 2 other sessions this week and she asked if I thought I could do more. I'm wanting to more slowly increase if it really helps. I asked if the volume really correlates with the effectiveness of the dialysis and she said yes.

[LeslieK in reply to PurpleGeekGirl7]

I did work and even still towards the end when my gfr was low but I started to experience symptoms. I wore tennis shoes and I also worked in a hospital. I stopped working the minute I had that pd tube placed. I was too tired and sick. I wore flip flops but I wasn’t really going anywhere for a long time. I was embarrassed, sick, and freezing. Maybe crocs would be good for work?

You’ll be able to have a better idea of your clearance numbers as you start the cycler. I believe it was every 3 months I did a 24 urine and saved an overnight dwell drain and they test it along with labs. If your clearance is good they can maybe play around with the ML fill and maybe have a tidal set or even less time on the cycler per night. It could always go the other way too thou. I had good and bad results that led to 10 hrs a night from 8 hrs per night the original rx. It’s ever changing. Take notes it’s a lot to keep up with and then you can track symptoms.

I’m sure you’re savvy with healthcare with will absolutely benefit you on this PD journey.

[RonZone]

Ok, going to chime in here, but I do want to say from the start that my back pain experience could very well be very different from your. Your team will need to help guide you through this, but YOU need to be your best advocate in finding a solution.

Read my experiences with back pain in these notes I posted as I went through manual training week:

healthunlocked.com/nkf-dial...

healthunlocked.com/nkf-dial...

healthunlocked.com/nkf-dial...

So after going through all that during manuals, and seeing a variety of specialists about the pain, once I started PD on the cycler, I experienced little to no pain in my back. The team things that it's because when i'm lying down at night doing PD, the fluid is distributed over a larger area inside of me and not sitting in a clump on those nerves that were causing the pain when doing manual PD sitting up. I'm really hoping that you have the same outcome, that switching to cycler PD while lying down will fix your back pain issues, but again, your issue may be come from a completely different cause than mine and that might not be the case. But just be prepared for it to be very difficult to find out exactly where your pain originates. I still don't think I ever found a doc who could tell me exactly what was causing the excruciating pain i was experiencing.

Please let me know what you find out as you go through the discovery process.

[PurpleGeekGirl7 in reply to RonZone]

Thank you so much for the detailed posts, I am so sorry you had such severe pain during manual. Mine wasn't quite that severe even at its worst, but certainly distracting enough that I couldn't continue working on my laptop properly and I would not be able to able to fall asleep in that state. Going back to 1600 and taking tylenol and using the heating pad all contributed to better sessions on the cycler at training on Wed and Thurs this week. I am hopeful that like you say, being flat while sleeping will help too.

[RonZone in reply to PurpleGeekGirl7]

I wish you the BEST of luck on dealing with the pain. Keep us posted!

[RonZone]

Ok, looking at symptoms of IgA nephropathy, I see:

Pain in one or both sides of your back below your ribs

So your pain may be directly associated with your diagnosis, and totally different from the pain I experienced. I was given pain medication that was stronger than Tylenol during the time I was in severe pain, so you might ask your team if they might give you something temporarily to stop the pain until it "improves". Don't suffer needlessly if there's something you can take to get you over this hopefully temporary pain event.

[PurpleGeekGirl7 in reply to RonZone]

I do not think its related to my diagnosis since I haven't had the issue before starting PD and within about 15-20 minutes of completing my training sessions I'm perfectly normal again.

[RonZone in reply to PurpleGeekGirl7]

Sounds like your pain issues and mine could be related. Though mine was like intense for a couple of minutes (intense meaning had me crawling around on the grown in pain because i couldn't stand up), then it would diminish until I tried to go from sitting to standing again. I figure the fluid was putting pressure on some nerve in my lower back that was getting really pissed off by the whole process.

[LeslieK in reply to RonZone]

I need your Dr. !! I never had pain relief or even a rx for insomnia and itching. I still can’t sleep post transplant and they don’t help with anything like that.

How are you doing on this? You’re so active and helpful on this forum. You always have such educated posts.

[RonZone in reply to LeslieK]

yeah, my primary doc was very helpful during my whole pain ordeal. Much better than the Neph and dialysis team. I don't have any exprience with post transplant, so not sure about treatment for that. You should create a separate post in the transplant forum and ask about those issues and see what folks say.

As for helpful. Uh. thanks, but I do not feel like I know much of anything past my own experience. Wish i knew more to answer more questions, but my experience is limited to PD at this point.

[RonZone]

When do you start cycler training, which cycler will you be using?

[PurpleGeekGirl7 in reply to RonZone]

I started manual training last week and then this week on Monday I started cycler training. I got 3 sessions on the cycler this week (3 exchanges of 30min dwell time). The cycler in the clinic was Baxter HomeChoice Pro. My RN said my machine may be a bit different but should work the same. She will be bringing it to me next Wed. I will have 1 more training session on Monday in the clinic.

[RonZone in reply to PurpleGeekGirl7]

Ok, hopefully once you are going your exchanges lying down, the pain will reduce greatly. I have the Baxter Amia. Your machine is a good one from all that I hear from people like BeachGirl and Horsie63 on this forum. You should be up and running really fast.

[horsie63 in reply to RonZone]

the Claria is easy to use and once you get going it won’t take long. I spend about 20 minutes. Longer cause now my husband has to do alot

[RonZone]

Oh, the pain medicine I was given for my back pain was a generic for Percocet

[RonZone]

How you doing this week?

[PurpleGeekGirl7 in reply to RonZone]

I’ve now completed my first week of nights and in the routine. Each night and exchange is slightly different. Sometimes mild back pain, sometimes bladder irritation drain pain, sometimes stomach pain, sometimes perfect. My heating pad is the best $30 I’ve spent in a long time! I’m so glad my patient line is long enough that I can start out my evening on the recliner in the living room to watch videos etc and transition to bed around the end of second cycle. Sleeping on my preferred side has not worked well yet. Few nights have been a bit tough to sleep but overall seems to be going in the right direction. Today I turned in my samples for my first adequacy test. Nervous!

[RonZone in reply to PurpleGeekGirl7]

Wow, congrats on completing your first week. Sounds like you're getting in the groove. Yeah, I turn on the tv and have a movie or something going on in the background while I go through the whole setup/connection process in the evening. I thought it might distract me and cause me to make mistakes, but now, i just do things from rote memory and having the tv on helps fill the "void" while I'm waiting on the machine to do something (prime etc). Puts a completely new spin on "prime time television", ya think? Good luck on the adequacy test!