It has been a long journey, but I finally start PD tomorrow. I am so excited to hopefully get my life back (or at least some of it)!
It only took a surgery to insert the cath, a revision surgery on it to try to get it to work, a removal surgery when the revision failed and then a final surgery to insert a new cath - 5 months down the road and I finally get to start home dialysis tomorrow night!!!
Fantastic! After all the things you've experienced, this is exceptionally good news. Please let us know how things go. We all care about you!
Excellent!
Wow, what a journey. Hope all goes well
It must be difficult to get the catheters just right. My fills went okay but my drains were not that good. A lot of times, I had to stand up and bounce around to get most of the fluid out. Hopefully, you will have a better outcome. Congratulations on getting that far.
That was similar to my second time. I would fill fine, but when we tried to drain (manual or cycler) the catheter would create suction against my peritoneal wall. This new one seems to be working just as it should. I hope it lasts.
I had my catheter installed a month ago and have had 3 flushes. My fill, also went well but my drains are also slow. They are attributing that to constipation. Another problem is after every flush I have fluid leaking into my scrotum. The Swelling is huge. It takes 2 to 3 days for my body to absorb this fluid. The Doc has said either a tear or a hernia. Trying to get an appointment with nuclear medicine so when I have my next fill with some added dye they can pinpoint the leak. Then back to the surgery.
great hope it all goes smoothly for you now🙏
Praying it all goes well. Keep us posted!!!
Welcome to the PD community. So you have had quite the ride to get here. I also didn't have a "smooth" intro to PD, so I totally understand. It took me 6 months to work out the kinks and finally get on the cycler. Which cycler are you using? Which solution strength, how many exchanges and what volume of fluid are you using. Sorry lots of questions. Just curious to compare your set up. Also do you keep fluid in during the day?
I REALLY hope things go more smoothly from here on out. Mine is pretty much routine now, though after 6 months being on the cycler, they still haven't got my kt/v level where it should be. (that's the measure of how good the dialysis is working). They want to increase my volume to 2300ml per fill to see if that helps. I'm already dialyzing 4 exchanges per night over 10 hours, so adding time would start to effect my daily life. I still try to work while doing all this. Are you still working?
Just be careful with the increase fill volume (depending on your size). Last year my dialysis unit wanted to go to 2500ml fills overnight to hit the Kt/v and I ended up with an umbilical hernia...
I'm only doing 2000ml now, but it's around-the-clock (no dry period).
ahh, gotcha, yeah they want to go to 2300. I just got one hernia fixed this past fall, so hopefully they won't cause me to have a blowout. I can't have fluid during the day. Found out during manual training that it causes severe back nerve pain, the debilitating kind, so I have to be dry during the day unfortunately. I guess I could ask em to increase the time rom 10 hours to 12 instead of increasing the volume but that would mean dialysis would start at 7 in the evening and end at 7 in the morning, pretty much killing my evenings for getting anything done after work.
they started me at 2400 / only on night 2 but night one went pretty well except for some slow drain alarms. What is your average UF overnight?
Oh wow, so you started at 2400. My UF goes between 400ish to 600ish, though I don't really keep a record of it, but it's in that range. Funny my PD team (nurse, doc, etc) never even mention the UF numbers. Not sure why. They're all about the potassium, phosphorus, and KT/V numbers mostly.
Glad night two went ok. I still get those slow drain alarms if I'm not laying on my left side.
I am using the Liberty cycler - doing 2.5% - 2400 fills 4 times for 1.5 hour dwell. Not leaving any in during the day right now. I am on a little over 8.5 hours a night. Glad you were able to finally get going too.
I'm on the Amia cycler, but also get the slow drain alarms. I can't leave fluid in during the day because it causes extreme back nerve pain. Is there a reason you are "dry" during the day? Just curious. I know a lot of folks keep fluid in all day.
plz let everyone know how it works out. Since U are doing home D, I s like to know the pitfalls….do u get up the ne t morning and do regular routine, do you feel great, are you tried. How many days do you use the at home machine.
Thank you for sharing.
Finally some good news!!!
A Summer Day on Manual PD
Fatigue from PKD has finally hit
PD catheter installation
Finally got the Diagnosis!
