seeking any and all input - big decision

[rockhounds]

Hi,

We are seeking any advice, information, things we haven't thought of, really anything regarding our dilemma.  The whole thing has been weird, so I am going to be kind of detailed here, I hope it doesn't get too long.  If you want to read just the dilemma, skip to the last paragraph

My husband began CAPD at the beginning of the year (2010).  In February he had peritonitis and did three weeks of vancomycin.  He never had an 'uh-oh' moment where he thought he had screwed up and contaminated the catheter.  We are pretty positive (although the doctors won't say so) that he was having symptoms of peritonitis a week and a half before he had a cloudy outflow.  He had had huge pains in his shoulder on two different occasions (not in his belly, so we didn't connect it to PD), which turned out to be the same pain he had when he had full-blown peritonitis, along with cloudy outflow and a bunch of other clearly peritonitis symptoms.  We were told later that the shoulder pain is connected to his diaphragm being aggravated by the peritonitis.  (but the docs still sluff off the same pain he had in the week and a half before, because they say it takes less than 24 hours to get full blown symptoms).  After the antibiotics his symptoms were gone.  We asked how they knew the bug was gone and they said if he still had it he would have a cloudy outflow.  Everything looked good, and we went on with life.

A week ago he asked them to test his outflow bag, because once in a while it looks hazy (not really cloudy, just not perfectly clear), although it is usually clear.  They tested for white blood cells, and came back with a count of 400 (it was 4000 when he had full-blown symptoms the previous time).  We were called back for a more thorough culture.  He was completely asymptomatic.  The next day we got a call and were told everything was fine, nothing had grown.  Three days later we got a call and were told the lab had found a bug on one of the thirty slides they did.  We were told it might be lab error, since it was only one slide.  Went in for antibiotics, just in case.  Meanwhile the lab was identifying the bug.  Within two hours of getting the antibiotics he had full blown peritonitis symptoms - cloudy outflow, pain, etc.  Which is weird, because last time he had the antibiotics it made him feel better.  Got a call and found out it was the same bug he had the first time, staph hominis, which is fairly rare, and came back with entirely identical information, so they know his infection never went away the first time.

They just did an ultrasound - one with him dry and one with him full - looking for an abscess where the infection could be hiding and didn't find anything.

We were told the bug is probably hiding out somewhere, and it might be in the cuffs.  We were given a choice - we can either
(A) -  try 6 weeks of vancomycin in an attempt to kill the bug.  Risks -  scarring his peritoneum and not be able to continue with PD.  And, it might not kill the bug off. 
(B) - get his catheter replaced, and go on hemo with a neck catheter in the meantime.  Disadvantages - spend so much time having surgeries and doing hemo that he will have almost no time to work (we are self employed), which means we will have to borrow money to get through.  The dialysis unit and hospital are an hour and a half away.  Risks - all those surgeries. And, they could be wrong about where the bug is hiding, and we are no better off than when he started.

Any thoughts at all would be greatly appreciated.  Oh, and his exit site has always looked great, it was even described as 'beautiful' the other day.

[paul.karen]

Hello and Welcome to IHD.

Sounds like a total drag your going through.  I dont have much Useful information for you other then the shoulder pain.  Generally people get shoulder pain when there is air in there line.  This happened to me once and since then i always check the line.  An inch or so of air at the tip is kinda normal at least for me and my machine.....

I hope they can figure out where the problem lies and can correct it quickly. 

[peleroja]

I got peritonitis due to an infected abdominal hernia which then spilled into my dialysate.  Due to the fact that the infection was pseudomonas, they had to remove my PD catheter and I went on hemo for 6 months before they determined there was no more infection and it was safe to give me a new PD catheter.  Pain in the butt, but it worked.  Been back on PD for almost a year now.

[Rerun]

The choices are much like "we can kick you in the ass now or later".

I'm not sure what I would do.  It is another snap shot of the best health care in the world at work. 

Geez!  I guess I'd take the antibotics first.  Best of luck!

             

[*kana*]

I have to agree with the other poster about the shoulder pain and air in the belly.  I get that some times and it is terrible.

I personally would go for the 6 weeks of vanco and not have the cath pulled.  I think once you get peritonitis it really does stick around for a very long time.
 
 If he has to go on Hemo he risks getting a worse infection on that cath line.  Has he considered getting a fistula?  I think I would consider that also because there will come a time when he needs to go back on Hemo and a chest cath is not the answer.  I have seen way to many infections on those lines and it just isnt pretty. 

[Sluff]

No advice here but I wish you the best which ever way you decide. Keep us in the loop.

[Jean]

 No advice from me either, altho, I think I would try the antibiotics first and see what happens. So sorry you are going thru all of this, please let us know how you are both doing.

[rockhounds]

Ugh, I just typed a big long thing, and my phone fell on my keyboard and presto!  deleted everyting.     Here goes again...

Thanks for all your input and support.  I didn't know the thing about the air in the line - is that something from a machine?  He does manual exchanges and runs fluid through the line to flush the air out before filling. 

We did learn something interesting yesterday.  We had been told "either do six weeks of vanco and risk destroying your peritoneum, or..."  so we (my husband and I) were talking and we realized we didn't know what was going to do the destroying - the 6 weeks of vanco, having an infection for 6 weeks that is not being fully cured, or the infection coming back stronger after the 6 weeks.  So I called his nurse and asked, and she said it would not be from the vanco.  Which was a big relief, because we have already started a vanco regimen, and it is nice to know we are not poisoning his peritoneum along with the bug every time we give him a dose.

His regular neph has been out of town for a family emergency since before we found out he still had the infection, so we have been only talking to his PD nurse and another neph (the only other neph in town).  We have an appointment for next Wednesday with his regular doc, and I have a bunch of questions for him.  Like - if this is the antibiotics we already gave him and didn't cure it, and the bug is susceptible to other antibiotics, should we try a different one?  I have two family members that have recommended (independent of eachother) that we find out actual percentages about how effective each antibiotics option is.  Apparently that is something they can do.  I know his neph is not going to be happy about all this, not just because of the crappy situation, but because we were talking to him about us leaving town on a trip, and what to do if he gets sick, and his advice was "Don't get sick".  Not very good advice when my husband is standing in front of him with an infection no one knows about. 

They say if the infection is hiding out in the cuffs it can't be cured with antibiotics, because the cuffs are not living tissue.  Well, is it possible the infection has spread in his body at all, and if it has, and they put in a neck cath, isn't that more stuff that is not living tissue for the infection to hide out in?  Maybe that doesn't make sense, I don't know how/if infections travel through the body, but it sounds like it might be something that is possible.

So right now we are all hurried up to wait for the appointment wed, and in the meantime continue with the vanco dosing.  The 6 weeks of vanco is looking better and better.  Plus, I am pregnant with our first child and all those surgeries would be no fun at all.  Nope.  Not at all.

It sure is nice to know people are listening.

[M3Riddler]

I have to agree with the other poster about the shoulder pain and air in the belly.  I get that some times and it is terrible.

I personally would go for the 6 weeks of vanco and not have the cath pulled.  I think once you get peritonitis it really does stick around for a very long time.
 
 If he has to go on Hemo he risks getting a worse infection on that cath line.  Has he considered getting a fistula?  I think I would consider that also because there will come a time when he needs to go back on Hemo and a chest cath is not the answer.  I have seen way to many infections on those lines and it just isnt pretty.

One thing you have to watch for with PD and Peritonitis is that the bug can colonize in the catheter itself. so even though you are on the antibiotics and killing the organizme in the peritoneum, the bacteria can excape from the catheter and go right back into the peritoneum causing another epesode of peritonitis.... Just something to think about.....

///M3R

[rookiegirl]

Have they identified from the culture the type of Bug?
When I had Perinotitis due to constipation, I was in the hospital 4 days because they needed to run a culture to identify the Bug.  I was told if they can identify the Bug, they will know which antibiotics to use.  My Bug was E. Coli.
While I was in the hospital they gave me a very strong antibiotics which helped with my pain (I can't remember the drug name).  But once they identified the Bug (sorry can't remember the name again) I was only on 7 days regimen where I injected the antibiotics through my solutions.

Just my opinion - I would choose to stay on PD.  But they really need to find out the type of Bug.  There are kinds that leave build up in the cath which in this case they will have to replace the cath to avoid Peritonitis again.

Best of luck to you both.

[rockhounds]

Yup, the bug is staph hominis, which is apparently pretty rare.  They ID'd it in the first 24 hours of the first episode, and we did 3 weeks of vanco injected into his solution.  The nurse actually told us that it's a good thing it wasn't staph epidermidis, because that is the common kind of staph for peritonitis (second to that is staph aureus), and if it had been that she would have been blaming the second case on us (like she did the first), instead of realizing it was the same original infection. 

I actually found this thing online that was instruction for nurses not to get too carried away with the blaming the patient for the infection, guess she never read that.