Not doing well

[drinkboy]

Sorry to hear about the pneumonia, but at least they figured out what the problem is and hopefully they will get it corrected quickly.  Thanks for updating us.

[paddbear0000]

I hope you are feeling better by this point (or at least getting some treatment). I'm so glad I got a pneumonia shot this year! Please update us on how you are doing!!

[Restorer]

Well, I never replied to this to finish it up.

Turns out it wasn't really pneumonia. The peritonitis that I had threw off toxins that caused the capillaries in my lungs to be more permeable to fluid. My CAPD has never been truly sufficient, and I'm a fast transporter, so I was always fluid overloaded. That fluid found its way into my lungs and stuck around.

In March I finally got on the cycler, and with the much shorter dwells, I finally stopped reabsorbing fluid and I started ultrafiltrating a lot. One of the first nights I was on the cycler, it took off 5 pounds of water. It really helped, and within a few days I was no longer puffy everywhere, and I didn't feel like the marshmallow man anymore, and my cough went away.

That was great, until recently. Two weeks ago, the peritonitis came back with a vengeance. I woke up at 2:30am during my cycling with abdominal pain, more diffuse and more intense than the previous case of peritonitis. With some Tylenol, I stuck it out until morning, then went into the ER and got it treated. They gave me intraperitoneal vancomycin, and a prescription for oral Cipro.

Then yesterday. It came back again at about noon. The pain was mild and tolerable, but when it didn't go away after a couple hours, my plan was to call my doctor for more antibiotics. Unfortunately, I didn't get the chance. That night I hooked up to the cycler, and the first cycle was torture. I pretty much bypassed the second exchange and aborted the treatment, and went in again to the ER. This time the pain was very much unbearable - the worst pain I'd ever felt. It seemed like it took forever to finish all the paperwork and triage, then I finally got a bed, and it took another 20 minutes to take blood samples and get ready to give me some pain medication.

But they did eventually give me enough Dilaudid to fix me up, and from that point I was much more comfortable. But it was still another night in the hospital, and that's not something I like. They gave me IV gentamycin and peritoneal vancomycin, and took a chest X-ray and a urine sample, then finally sent me home in the morning. I've spent most of the day sleeping (or trying to sleep).

This is getting ridiculous. I'm going to try everything I can to fight this bug aggressively. I just hope my doctor can keep up.

[David13]

Sorry to hear about all of the difficulties.

Make sure they are drawing a culture of your fluid so that they can prescribe the most effective antibiotic to treat the peritonitis. 

Keep us updated. 

[jbeany]

   Hope they get it fixed soon!

[Restorer]

Make sure they are drawing a culture of your fluid so that they can prescribe the most effective antibiotic to treat the peritonitis.   

Yup, each time I've been in, they've taken a sample to test, as well as blood cultures just to be sure. It always turned out to be staph. My PD nurse even took a sample a few weeks after my first infection, which showed that there was still some staph bug hanging around.

[David13]

Yup, each time I've been in, they've taken a sample to test, as well as blood cultures just to be sure. It always turned out to be staph. My PD nurse even took a sample a few weeks after my first infection, which showed that there was still some staph bug hanging around.

Have you been able to figure out why it keeps coming back?  Is it that they aren't able to completely get rid of it with the antibiotics?  Maybe they need to prescribe them for a longer period of time?

Or is there possibly a source of contamination that needs to be tracked down? 

[paddbear0000]

I'm sorry to hear this. I hope you get this kicked soon!   

[Brightsky69]

I hope you get better soon. What a ride!

[Restorer]

I don't know why it keeps coming back. I do everything by the book, and my PD nurse has praised my technique, so I don't think I could be contaminating myself. I'm hoping there's nothing sticking around on the catheter that would cause it have to come out to fix this.

On top of all that, now I'm not draining properly. My bags are continuously cloudy and fibrinous, so I'm suspecting that either there's some fibrin blocking the catheter somehow, or it's gotten tangled up in omentum somewhere. Either way, I'm consistently draining less than I put in, and my fluid weight is going up again and I'm starting to get some of those lung symptoms back. When I go in on Monday, I'll be asking for some heparin with my antibiotic dose.

[andykinney]

It sounds like the original infection never really went away!      Maybe the course of antibiotics should be longer in order to kill this bug completely. 

I hope they can get this under control and you start to feel better soon.  Good luck!