6 Weeks and Counting...

[Restorer]

Six weeks ago I got peritonitis. Don't know where it came from, but it was Staph. aureus that didn't seem to respond well to the usual cefazolin, so I was switched to vancomycin. The pain also got bad enough that I had to get a prescription for Percocet. Since then, I've had on and off pain problems, and fairly consistent UF failure - negative UFs every night, or a couple hundred positive if I'm lucky (my usual is between 800 and 1200 per night). I've been carrying about 10 pounds of extra water weight, keeping it at that level with diuretics.

I've also had problem after problem with fibrin. The first couple times it happened, I had to go in and get the clots sucked out of my catheter via syringe, and then go home with a vial of heparin to put in my bags. When I ran out of heparin for the third time, I started sucking out the fibrin myself when I needed to.

Last night, the fibrin won. I'm out of heparin, and I wasn't able to get this clot out of my catheter. I got no dialysis last night because the cycler just couldn't handle it. Early this morning, I woke up with abdominal pain again. I called my PD nurse and described the problems, and asked if the culture they took when I finished my vancomycin course had come back. Apparently they lost it, or it never got picked up, or something, so they never found out if the antibiotics were totally effective. It's possible the infection's come back again. This morning I had a fever of 99.9.

Not to mention I just moved, the weekend I got the peritonitis. My place is in shambles, still mostly unpacked, because I haven't had the energy to do anything. I'm just waiting for everything to get settled, and the inflammation to go away, so I can get better UF, and take this fluid off, and hopefully get back to normal.

I have a PD supply delivery today - any time between now and 1:30 (two hours from now). Once I get that delivery, I'm heading over to the clinic (which, because of the move, is now half an hour away instead of 15 minutes - which my PD nurse keeps telling me is really far, but I don't think so - I like driving).

 

The rant above was brought to you by The Council for Avoiding The Cliche "Why Me?". 

[MooseMom]

Oh that's just bloody brilliant...here you are struggling and your clinic (or whoever) lost your culture.  How very helpful.  Sometimes I think the worst thing about CKD/dialysis is that you have to rely on so many people to be competent, and they just are not.  And everything looks bleaker when you don't feel well and your home is in chaos.  Ugh.

Hey, come back and let us know what your clinic has to say.  Hopefully a visit there will get you back on track.  They owe you.

[Restorer]

I don't like to rely on so many people, you said it right. I hate it when I have to call, explain a problem, drive to the clinic, and then they fix it in 30 seconds and send me on my way. That's why I'm trying to stockpile as many extra supplies as I can and get permission, or at least some kind of instruction, in how to do a lot of things myself.

Sucking out fibrin clots with a syringe? Check. Adding heparin to my bags (and adjusting how much I need)? Check. Having a bunch of "use as needed" prescriptions and actually using them at the right times? Check. Adding antibiotics to my bags? Yes, I do that myself, but I still have to be told when to do it, and pick up the supplies every week.

So I'm trying to be as self-sufficient as I can with all this; trying to prove to my PD nurse and nephrologist that I know what I'm doing and I can handle myself. If only I didn't keep getting peritonitis (and I don't know where or how I could've gotten it), maybe they'd trust me more - but also maybe I wouldn't have to do all this either.

[Restorer]

Well. WOW. After I got my delivery today (45 minutes late), I drove to the clinic and got worked on. My PD nurse, Rick, couldn't do anything with the clot except try to get some heparin in me and wait. Since I had described abdominal pain and cramps, and he didn't have my end-of-treatment culture results, he decided to give me more vanco.

First, I sat for quite a while letting myself drain, very very slowly, around the clot, in order to try to get fluid to do a culture on. We couldn't get enough fluid for that, but there was enough to send to the hospital from Gram-staining and a cell count.

After that, Rick put a ton of heparin and a full 2 grams of vancomycin into a 2-liter bag and started trying to get me filled. Of course, it was going very slowly, so he decided he'd try to squeeze the bag as much as he could. He alternated from rolling up the bag and squeezing in his hands, to twisting it on the IV pole, to standing on it! It was still filling very slowly, but it was filling.

Once I had about a liter in me, it started to get pretty uncomfortable. I had taken a Percocet a couple hours earlier for the abdominal pain, but this was overcoming the Percocet. Once I had 1.5 liters in me, I was in terrible agony. Lots and lots of belly pain, sweating, heartburn, nausea, feeling dizzy... we stopped the fill there and tried to give me some time for it to calm down, but it just stayed incredibly uncomfortable.

We decided some had to be drained off because I was in such bad shape. He took out about 300ml, and then tried to see if that settled me. It was still fairly bad, the pain was hard to deal with and the heartburn and nausea were bad. He took off another 200 ml, so now I had just 1 liter in me, and with a good bit of rest right there in the PD room, I felt okay to drive back home. Rick gave me a bag full of heparin vials so I had supplies to deal with clots in the future.

When I got home, all I could do with curl up in bed and try to keep from passing out or vomiting. I recovered slightly over 5 minutes or so in bed, then I was able to get up and take some more Percocet, crawled back in bed, and slept for 4 hours.

My mother finally came to check on me at about 9, once she had finished cooking her pot roast, and I explained the deal to her. She brought me some carrots from the pot roast, and carried a dialysate box up from the garage.

Now I'm feeling a bit better, loaded with enough Percocet. Around 11 I have to try to do a manual exchange, and if that works okay, I can go ahead and use the cycler tonight. Whether it works or now, I have an appointment tomorrow at the clinic that'll probably last all day - catheter X-rays and checking my vanco levels and etc. etc.

It feels like writing out my day and what went wrong, what went right, and everything else, helps me get my thoughts in order. Doing it in a public place like IHD makes it seem worthwhile.

[MooseMom]

Lordy, what a day you've had!  I am still having some pain from my new fistula, and since I ran out of Vicodin, my husband got some Percocet from his dad for me.  I took half of one before bed the other night, and OMG, I was so dizzy for the whole night, even in bed.  And the next day I had what I surmise was a hangover (I'm not a drinker, so I don't know what hangovers feel like, but I think I had one).  So I can't imagine what you must be feeling with all the Percocet you had to take.

I'm really glad that writing about the details of your day helps you put your thoughts in order.  That's really important because then you can much better give an accurate description of things to your medical staff.  I am so sorry you had so much pain...I can't imagine.  How awful for you.  I am really eager to hear about your appt tomorrow at the clinic.  I know it will be a long day for you, but if you feel like it, I'd really like for you to post about it.  If not, just wait until it's more convenient.  It's important that you rest as much as you can.  I'll be thinking about you tomorrow and hoping you get everything finally straightened out.

[okarol]

Sounds awful. I hope they figure out what's causing the pain. It reminds me of another post about constipation or bowel irritability on PD, but I imagine you've thought of that already. Good luck, hope you can sleep tonight!

[Restorer]

Lordy, what a day you've had!  I am still having some pain from my new fistula, and since I ran out of Vicodin, my husband got some Percocet from his dad for me.  I took half of one before bed the other night, and OMG, I was so dizzy for the whole night, even in bed.  And the next day I had what I surmise was a hangover (I'm not a drinker, so I don't know what hangovers feel like, but I think I had one).  So I can't imagine what you must be feeling with all the Percocet you had to take.

Percocet is the only strong painkiller I've found that doesn't upset my stomach. I can only take Vicodin for a couple days before I start vomiting. Percocet does tend to make me a little nauseated if I've taken more than one in 4 hours, but it does the job the best.

Sounds awful. I hope they figure out what's causing the pain. It reminds me of another post about constipation or bowel irritability on PD, but I imagine you've thought of that already. Good luck, hope you can sleep tonight!

I'm certainly not constipated - I had some terrible intestinal cramps, probably from something I ate, the first half of the week, accompanied by an amount of diarrhea. That prompted Rick to start considering that the catheter had possibly wrapped around the intestine, which I've read can be a VERY bad thing. Getting fluid in me helped it drain faster, but I don't know if that was from floating the catheter away from where ever it might've been tangled, or if it was just the heparin dissolving fibrin. I guess I'll see tomorrow.

I'm doing my manual exchange right now - the drain is going slowly.
...
Now I'm doing the fill. I can't tell how fast it's going, but eventually it'll probably reach a point where I can't comfortably hold any more. That's what I'll temporarily program the cycler for tonight, and hope it can deal with the slow fill/drain without too many alarms.

ETA: The manual drain and fill were so slow that using the cycler tonight would just mean alarms all night. I did manage to get 1500 ml in without much discomfort, so I'll hold this all night, and do another manual in the morning before I head out to the clinic.

[MooseMom]

I don't really know much about PD, so it has been interesting reading your posts.  I'm still eager to hear what you clinic will do for you today.  I'm also curious to know when they think you will be up and running again without all of the problems you've had recently.

[paul.karen]

Wow what a read.
What strength solution are you using to pull off the extra fluid?

Wish i had some words of advice, it does sound like this would drive a normal person crazy let alone someone dealing with ESRD.  I hope the clinic can figure out what is going on and get you back to normal.

best of luck.

[Restorer]

This morning the pain was back to where it was yesterday morning, before all the hubbub with filling at the clinic, maybe even slightly improved. I did a manual exchange and it went smoothly and quickly, then I called my PD nurse and let him know that I was doing better. He decided I probably wouldn't need to come in today. The cell count on the effluent sample came back, and it probably wasn't indicative of peritonitis, just some kind of inflammation.

He cleared me to stay at home today and just do manual exchanges to catch up on my lost dialysis, unless my neph had other ideas. I haven't heard about that yet, so I figure I've got the weekend off. On Monday or Tuesday I'll go back in to get checked on (Tuesday is my monthly labs anyway, and when my 24-hour collection is due).

Wow what a read.
What strength solution are you using to pull off the extra fluid?

I've been using 2.5% since I ran out of 4.25% boxes, but I just got a delivery so now I have some 4.25% fluid to use. Not that it matters much - with this inflammation, ultrafiltration just isn't happening. From what I've read, the inflammation causes the dextrose to very easily get sucked out of the solution, giving it no chance to pull water out the other way. At least it also means I'm getting more calories out of my fluid.

[MooseMom]

OK, well, if you all are comfortable with you not going back to the clinic until after the weekend, I guess that means that things are at least improving a bit.  Have a restful weekend!  Boy, you need it!

[Restorer]

I wasn't all too thrilled with having to go back to begin with, I just wanted to get things sorted out and fixed. Since I woke up today feeling much better, with PD working again, and very little pain, I'm happy. I just still have to hope that the inflammation goes down and I can start ultrafiltrating again.

[MooseMom]

Oh, I'm so glad to hear that!  You've been through the wars.  I don't know what ultrafiltration is, but if that's what makes you happy...

[Restorer]

Ultrafiltration is just the amount of water being pulled off. A lot of the time recently, my ultrafiltration numbers have been negative, meaning I'm actually absorbing water from the dialysate rather than getting water pulled out.

[MooseMom]

Ultrafiltration is just the amount of water being pulled off. A lot of the time recently, my ultrafiltration numbers have been negative, meaning I'm actually absorbing water from the dialysate rather than getting water pulled out.

Well that's a bit counterproductive, isn't it!

[Restorer]

Oh, look at that. More problems. 

It's almost 3 AM. An hour ago, the cycler died with a system error. Tech support said it was safe to keep using the cycler, but I can't resume this treatment. This is my 4th or 5th aborted treatment in the last month and a half. You know what makes it all even better? I was supposed to be doing a 24-hour collection for adequacy tonight. Even if I set the cycler up again for the rest of the night, and I could figure out how to tie together the aborted treatment with the new one, I'm out of drain bags. The bags connected right now are my last set. So my adequacy test is SOL yet again.

I called my PD nurse's pager, told him what happened, asked if I should bother setting up again. Personally, I just want to sleep. Yes, my labs are tomorrow, and I should get as much dialysis as I can for that, but I've had enough right now. If I don't hear back from him in 10 or 15 minutes, I'm just going to sleep, regardless of what he might say later.

[ceejster]

Oh WOW. That is absolutely awful. Are they going to repair/correct anything with your cycler?

You certainly have been through the wringer lately - hope things improve!!!!

[Kitts]

Oh WOW. That is absolutely awful. Are they going to repair/correct anything with your cycler?

Yeah, I'm going to go teach the stupid thing how "baby machines" are made.  Just as soon as I find the rest of my screwdrivers.

[billybags]

Restorer, Ive just picked up your post, my goodness you have had a bad time. Peritonitis is crap, when my husband had it they said it was because he didn't wash his hands, like "NO" could it be because we were abroad in a hot country and the bugs were rife. Have they established what gave you peritonitis, it is a very gray area. You get the blame all the time. it took 3 lots of different antibiotics to sort him out. He was in terrific pain so I sympathies with what you went through..He ended up with having his tube out because the bugs lurk in the cath, went on hemo for 4 months and is now back on to CAPD, they are trying to get him back on the machine because he is not doing very well with draining. I am surprised they have not pulled your cath. Have they done any tests to see if you are clear? I really hope you are feeling much better, we've been there got the t-shirt and it is not nice. I think the pain is the worst thing.

[MooseMom]

So, what happened next, Restorer?  Did you fall asleep, or did you get that phone call and solved the problem?  How are things going today?

[Restorer]

So, what happened next, Restorer?  Did you fall asleep, or did you get that phone call and solved the problem?  How are things going today?

My PD nurse never got my page. I fell asleep last night without getting a call back. I called him at the clinic when I woke up, and he said he didn't know he had a page, so I described the situation to him again. To make things easy on me, he just delayed my iron/labs appointment until tomorrow so I could do another 24-hour collection today, rather than come in twice this week.

Restorer, Ive just picked up your post, my goodness you have had a bad time. Peritonitis is crap, when my husband had it they said it was because he didn't wash his hands, like "NO" could it be because we were abroad in a hot country and the bugs were rife. Have they established what gave you peritonitis, it is a very gray area. You get the blame all the time. it took 3 lots of different antibiotics to sort him out. He was in terrific pain so I sympathies with what you went through..He ended up with having his tube out because the bugs lurk in the cath, went on hemo for 4 months and is now back on to CAPD, they are trying to get him back on the machine because he is not doing very well with draining. I am surprised they have not pulled your cath. Have they done any tests to see if you are clear? I really hope you are feeling much better, we've been there got the t-shirt and it is not nice. I think the pain is the worst thing.

This peritonitis was regular Staph. aureus. The first antibiotic we tried, cefazolin, didn't help with the pain in the first couple days, so we switched quickly to vancomycin and that took care of it. I haven't heard anything about the culture that may or may not have been done on the tiny fluid sample I gave last Thursday, so I don't know if the bug is still hanging around. I think I'm supposed to get more antibiotics tomorrow to be sure, and then after that I'll give another sample for culture.

[MooseMom]

I'm very eager to know if the bug is finally gone.  Don't keep us in suspense!

[Restorer]

I haven't heard anything back about the culture. I took another dose of vancomycin on Saturday, even though he doesn't think it's an active infection. It seems to be just continuing inflammation that's affecting my UF and causing bouts of soreness.