PD Dialysis Issues - Can't Catch a Break

[MSWwv]

So, I went from stage three to Failure very quickly (less than a year). My plan was always to go straight to PD, as it seemed to best fit my life.

My doc had other plans and was almost instantly in the hospital having a chest tunnel put in for Hemo. That was ok in the beginning and my fistula was then created. After about a month of Hemo with no problems, I suddenly started having real issues with it: intense migraines, cramping, nausea and vomiting, and the lovely exhaustion.

So my doctor fast tracked me to PD - happy dance. M catheter was inserted at the beginning of January which meant I should have been trained starting January 15 to be on home PD Dialysis by the end of the month.

Training day one and flush . . . catheter did not work, would not discharge fluid.

Back to surgery for a revision Feb 6.

Training day one and flush Feb 13 . . . Catheter was blocked, so the next day a high grade nurse was there and was able to force flush it and got it working. The next day the flush worked fine.

Training was postponed a week due to a staff members death in the family. So I was scheduled to start training again on the Feb 23.

Training day 1, Feb 23 . . . Guess what, catheter did not work. It was sucking on a lining and would not drain again . . .

Waiting now to see a different surgeon for another revision (or replacement) but cant even get a consultation until the 4th of April.

I need off of Hemo has it is literally killing me! I felt fine prior to dialysis and since starting my life has been pretty much non-existent from either sickness or complete lack of energy.

[RonZone]

Wow, just when you think your situation has had issues, you find someone who has had it MUCH MUCH worse. I truly feel for you in all this. I can't even imagine. Tell me, is your catheter the straight kind or the kind that's curled on the end like a seahorse's tail. We just had another person on here who had to have a second catheter put in because the first "straight" version didn't work.

Did you get the headache issue and loss of sight resolved?

[MSWwv in reply to RonZone]

I assume mine would be the straight kind but I’m not really sure as I have not really seen the other. I am going to see another surgeon next week to see if they can get this thing straightened out.

[RonZone in reply to MSWwv]

Yeah, time for a second opinion. I hear folks say that all catheter surgeons are not alike, some are a lot better at this than others. That could be the case with yours. Let me see if I can post a photo of the kind I have, the curly kind. It' something like this (let me know if you can see the photo):

graylinemedical.com/product...

[MSWwv in reply to RonZone]

Can I assume the curl is inside? If so, then I really have no idea on mine - I will try to look at my reports to see if they identify it.

[RonZone in reply to MSWwv]

yep, curl is inside with curl part down

[honeybug]

🙏🕊🤗

[Hawk12]

I was fortunate to get a transplant prior to dialysis, so I can’t tell you anything from personal experience, but I am a retired general surgeon and can advise you from that perspective. Most likely you have the Medtronic catheter like RonZone.

Have you had prior surgeries or any other problems, like diverticulitis, that could cause abdominal adhesions? What did they say was the problem when you had the revision? Did they replace the catheter or reposition it inside?

I agree with RonZone on the second opinion, although this doesn’t mean that the first surgeon did anything wrong. Most likely you have scar tissue (adhesions) around the tip of the catheter. They should be able to reposition the inside of the catheter with laparoscopic surgery. Usually, this is successful. Sorry that you have had so many problems!!

[MSWwv in reply to Hawk12]

Second was a revision/reposition.

[Darlenia]

Make sure to talk to the PD nurse at your dialysis clinic. My hubby was also on HD before he transitioned to PD. During that process, the front desk gave him a list of surgeons. His PD nurse happened to walk by and quickly stepped over and quietly tapped on one and told him to wait until he was available. This particular doctor was exceptionally thorough - making my hubby twist, turn, check waistband placement, sit down, stand up - marking the site in advance so my hubby could evaluate the selected area over a day's time . Some surgeons do more of these cath placements than others. So get the best and most experienced surgeon possible to do the redo. Interestingly, my hubby never experienced any drain pain. Later, our PD nurse commented some are placed "too low".

[MSWwv in reply to Darlenia]

My PD nurse feels that mine is too low.

[Darlenia in reply to MSWwv]

Interesting. I truly hope that its location isn't creating your issues. Your nurse sees PD patients day in and day out - more than anyone. I'd ask your nurse for guidance and see only the best surgeon regarding your next steps. I think many surgeons just throw in those caths without really knowing how they should optimally lay or perform during the dialysis process. I sense you'll have answers soon.

[RHOC]

I know it's tough, but keep your head up and smile strong.😉

[Ziggydoodah]

I am based in Scotland but was told by my dialysis unit, that once you start haemodialysis, then you can't do PD. Not sure the reason. However you can do PD and then start haemodialysis if it doesn't work. Sorry to hear you are having issues. Its one step forward and about ten back. Hope things get easier 🙏

[MSWwv]

That may be A national regulation. Does not seem to be the case here in the states.

[bikerchrish]

I just want to say I am so sorry you went from stage 3 to failure so fast. That is very upsetting. I am in stage 3 and I feel deeply for your situation.

[Blackknight1989]

this is from the UK site so I’d assume it applies to Scotland no mention that you cannot switch from HD to PD: nhs.uk/service-search/menta...