I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: hephziba on September 04, 2006, 08:25:13 AM
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Ahhhhhhh, a few weeks ago I was admitted with peritonitis caused by a pseudamonas bug which has been living on my exit site, they made me go to the hospital every day for a week to get iv antibiotics and it cleared and my exit site looked great for about 1 week, and now the skin around my exit site is looking a bit red and swollen. which means tomorrow they are likely either to threaten me with line removal and hemo, or ask me to do another week of iv antibiotics.
I hate this rubbish, has anyone here had that particular bug, and how did they get rid of it, I am on ciprofloxasin which is an oral antibiotic.
Ahhhhhhhhh any idea's ??? >:( >:D :'( :-\ :(
Heph
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Ahhhhhhh, a few weeks ago I was admitted with peritonitis caused by a pseudomonas bug which has been living on my exit site, they made me go to the hospital every day for a week to get iv antibiotics and it cleared and my exit site looked great for about 1 week, and now the skin around my exit site is looking a bit red and swollen. which means tomorrow they are likely either to threaten me with line removal and hemo, or ask me to do another week of iv antibiotics.
I hate this rubbish, has anyone here had that particular bug, and how did they get rid of it, I am on ciprofloxasin which is an oral antibiotic.
Ahhhhhhhhh any idea's ??? >:( >:D :'( :-\ :(
Heph
Hate to hear about complications! :( :'( :(
Did they do a culture and sensitivity test? If not, they should have. Cipro is the ususally the drug of last resort due to a high rate of serious, long term side effects, and the fact that it is usually held in reserve for particularly dangerous or drug resistant infections. Many doctors many consider systemic pseudomonas to fit that description, but if the infection is localized, IMO, most doctors would not. Of course, being a dialysis patient may also make the use of Cipro a first choice. ??? There may have been other older drugs which should have been tried first and may be an option even now. If they didn't do a culture and sensitivity then they don't know, and should certainly do one now.
If they did do a culture and sensitivity, then I'd ask that it be repeated to see if there is a new/different infection, or if the one week of IV Cipro may not have been long enough, and they may have stopped the drug therapy too soon.
I'd ask about augmenting the systemic treatment with some local/topical treatment?? Debridement and topicals may not be practical or feasible, but I'd ask.
I'd also ask for recommendations as to how to encourage your natural immune system to help fight the infection. Pseudomonas is usually an opportunistic infection and does not affect people with normal immune systems. Are dialysis patients considered to have "normal" immune systems? ???
Wish I had more info, and a more positive message, but if it is indeed pseudomonas, it can be a really nasty bug!!!
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thanks for your reply, I think I will get them to swab it again,
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thanks for your reply, I think I will get them to swab it again,
Any news from the "swab"?
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No, I was at clinic yesterday and I made them call a Dr, because my exit site was red and painfull and swollen like a tunneling infection. the Dr arrived about two hours later and done an ultra sound, and told me there was no fluid built up around the line and therefore it was OK, as I was still on cipro,
me and my wife were a bit unsure as she was a Jr Dr, but this morning the pain and swelling seem to have gone down and I am comfortable, we shall see them Friday to get the results of the swab and get my exit site checked out.
thanks Heph
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No, I was at clinic yesterday and I made them call a Dr, because my exit site was red and painfull and swollen like a tunneling infection. the Dr arrived about two hours later and done an ultra sound, and told me there was no fluid built up around the line and therefore it was OK, as I was still on cipro,
me and my wife were a bit unsure as she was a Jr Dr, but this morning the pain and swelling seem to have gone down and I am comfortable, we shall see them Friday to get the results of the swab and get my exit site checked out.
thanks Heph
Good job on making them call the Doc -- better safe than sorry. Glad it's better -- appears the Cipro is working!! Hope everything goes well on Friday -- keep us posted.
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OK, here's the deal , I went to the clinic on Thursday and was told my line would have to be pulled or maybe they would try some different antibiotics. but I would have to wait until Friday after the Dr's had a meeting to discuss patients.
So Friday, we went in expecting to have my line pulled, and not to happy about it but Id rather protect my peritoneum for future use than be on hemo permanently.
But the Dr's had decided to try more cipro, which really bugged us so we put up a fight, Ive been on cipro for about six months and it hasn't cleared the infection yet, I mean what had they done applied fairy dust to this batch...
So Pat the capd nurse came along side us, and started pushing for them to take the line out, It feels crazy to fight for something you really don't want, the thought of having my line pulled or doing hemo for any length of time is hell, but its better than the thought of hemo everyday for ever.
so this will be the better of two evils, so Monday afternoon I will have the line pulled under general anesthetic and hopefully they will put the permcath in while I am still under. my figures are all really good at the moment so I should be able to avoid dialysis for around 3-5 days .
and then our capd lady will kick butt for us and make sure I am on the list as soon as possible for a new tenkoff catheter. >:D :'( :-* :-\ :-X :-[ :P ::) ??? :o :( >:( :thumbdown; :thumbup;
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>:( that is not good news, I am so sorry, :( but I agree about the Cipro and fairy dust -- DUH!! It appears you and the nurse are wiser that the Docs!
Sorry I can't remember, have you ever had a fistula? If not, can they do one now, so when you can't do PD the fistula is there to use?
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Me and my wife have asked about getting a fistula formed, but the Dr we spoke to said, " having a fistula sitting there unused is a further risk of infection". didn't make much sense to me , I know people who were on hemo with a working fistula, had a transplant, left the fistula in place and fifteen years later when the transplant failed continued to use the fistula.
we may harass them for it, I think it would be so much less stressful, I have allready had 3 perm caths, two groin lines, one temporary neck line.
Ill let you know how it all goes. my exit site is actually looking really good today and all the pain has gone yet again.......
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well we will be waiting another week while on antibiotics, and then the line will come out and ill be on hemo six to eight weeks, not a thought I look forward to.
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well we will be waiting another week while on antibiotics, and then the line will come out and ill be on hemo six to eight weeks, not a thought I look forward to.
Oh my :'( I'm sooo sorry. Will they do a fistula this time so it can be maturing in case the cath has problems later on? With all you have been through I'd sure push for it to try to make things as easy as possible down the road. IMO, better to have it and not need it, than to need it and not have it.
Going to FL to stay with my parents for almost two weeks. Hope you do well while I'm gone :2thumbsup; -- please post and I'll look for it when I get back.
Lorelle
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Pseudomonads are very commonly found in water and are often referred to as "water bugs". Apparently it is the most common infection in PD patients. Perhaps if you end up getting another catheter, clean with chlorhexidine after washing in the shower. If its still a problem perhaps dont expose it to water any more and just clean with chlorhex if thats possible. What do you currently use to clean the exit site?
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WOW
I really REALLY wish I had been invited to these boards sooner (Where were you then Epoman :P) because you guys give great advice!
When I was hospitalized last summer for 6 weeks with non-stop IV antibiotics for the "worst case of Peritonitis in 20 years" at my hospital I felt all alone. They told me they STILL don't know what CAUSED my Peritonits and at first they didn't even believe it couldn't be treated at home until I didn't do my exchange til RIGHT THERE AT my appointment. I brought in a bag and told them "I am DOING the exchange RIGHT HERE so you can SEE the pain I am in!" As soon as the PD nurse saw she agreed to finally have me admitted. I couldn't believe I had to take things into my own hands! I knew I was not getting good dialysis since the exchanges hurt SO much to finish even ONE drain and my cycler machine kept beeping all night every night with all the fibrin!
Because they don't actually know the CAUSE they said they don't want me to EVER go back to PD again :'(
I really feel for you hephziba but at least they know what the cause was. I agree that you should be on a DIFFERENT antibiotic as you body DOES become immune to some of them. I know with my own body it started becoming allergic to them and I had to keep changing. I have been on Cipro too. That is one of the ones by body became allergic to.
I got switched to HD in July of 2005 via a chest catheter but didn't get a fistula until Jan this year. I don't really know what is the protocol for that but it sounds like you are getting excellent advice here and I really wish I had been here at that time! Man I felt sooooo alone!!! (And that was at a time when my mom had still disowned me so I didn't have her neither).
I know for me they didn't give me Chlorhexidine and I was using red soap to clean and put on Bactroban ointment prior to infection. After infection they had me go to the main "Shopper's Drug Mart" and pick up frozen vials of special medication to inject into my PD bags. When they tested my bag there was NO GROWTH, so that is why it took them so long to admit me. It was a case that baffled their minds I guess as to WHY it would NOT get better. They said something inside me was causing it to not get better. Something "naturally occuring"?? Does that sound right? I still don't get it! Because it baffled them they don't ever want me to go back to PD again :(
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Angie, the 2 times I had peritonitis they couldnt find what type of bug it was either. Thankfully the AB's cleared it up. Unfortunately I wont ever be going back to PD either.
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Angie, the 2 times I had peritonitis they couldnt find what type of bug it was either. Thankfully the AB's cleared it up. Unfortunately I wont ever be going back to PD either.
Is this a common thing? To be told they don't know the bug? I wasn't too happy when they couldn't tell me the cause of mine :(
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Im not too sure angie. However, with me, I always have "unknown" things. Like I have had a low grade temp on and off for 5 years, no apparent cause! It is now very constant, high when I go on machine, back to normal when I come off.
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Hello everyone, Some of you have been in touch and asked where my wife and I had got to, well, first of all I was on capd and had peritonitis twice in three weeks, and spent two months on antibiotics, eventually my tenckoff was removed and I had a permcath inserted, I am now back on Hemo, and this time its much better, I feel good, my fluid control is good, and my diets relaxed.
I had a venogram in view of getting a fistula, and was told my left arm is too damaged due to all the lines Ive had in the passed. So I will be getting a fistula in the near future.
I've actually decided to stick with Hemo for a bit, and I'm now on the transplant list no antibodys, a common blood type, so hopefully.......
Ive not been on for a long time as our laptop was hit by an evil virus that wiped the harddrive. weve just got it back today and I look forward to chatting with you all again..
Blessings Heph and Hephs little lady.. :thumbup;
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WOOOHOOOO, WELCOME BACK, I AM SOOOO HAPPY TO SEE YOU AGAIN, I (we) have missed you and the Little Lady. Glad things are working out for you and hopefully, HOPEFULLY, we hear of a transplant for you in the very near future, :thumbup; :clap; :2thumbsup;
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I have been wondering how you have been.
Glad to hear things are going well for you.
Hope the transplant comes soon.
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So glad things have improved for you!! :2thumbsup; Hope the T call comes soon.
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I'm so glad things are better. No antibodies is good news. I sure hope you get a transplant and get off the machine.
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Ya you sound like you've had an eventful time like my last year was. Hopefully it starts staying better and getting better and better all the time! We like it when you are around here ;) :2thumbsup; :clap;
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Hello All,
I was just released from the hospital Wednesday evening following a bout with "the bug". I've had several minor cases of peritonitis over the past 3 1/2 years that I've been on PD this time but all were able to be treated at home with nightly doses of Vancomycin in my dialysate bags. This time was different though. The pain came on quickly and was more painful that previously. First call to the Neph and he said to add heparin to my bags since I was seeing quite a bit of Fibrin which isn't normal for me and to take a couple of Tylenol for the pain. He said I could then come in to the clinic in the morning and they'd give me some IV antibiotic. Less than 2 hours later my husband was calling him back to say I was getting worse and was in much more pain. The doc gave the same instructions but did say if I felt I needed to, to go to the ER. After waiting perhaps another hour or so I told my husband it was time for another one of our "midnight runs". What do these things always seem to happen late at night?
In order to save some time we took along a CAPD tubing set so I could give them a fresh sample of what was in my belly. We were figuring on maybe an IV treatment right then, maybe a little something for pain and hopefully being sent home to follow up with the neph the next day. No such luck. I was admitted and started on IV Vanco. Over the next couple of days while we were waiting for the culture results, I was put on CAPD (6 exchanges daily) with Vanco added to the dialysate bag. Once the results came back as Pseudomonas Putida, an Infectious Diseases Specialist was called in. The nephs wanted to make sure I was getting the correct antibiotic for the problem. I was immediately switched to 750 mg. Levaquin oral and 100 ml Maxipime IV. I was told I'd have to go for daily IV treatments for at least 2 and probably 3 weeks. Naturally I wanted to know if this wasn't something I could treat at home since I'd added medications to my dialysate in the past. The ID doctor wasn't too happy with this as he said it was much more difficult to get this medication mixed properly for use in the PD solution and was really only comfortable with IV infusion.
Our compromise is that I'm now on Visiting Nurse care. The supplies for the IV treatments were shipped to us already mixed up along with pre-measured saline and heparin flushes. The visiting nurse came to our home Thursday and taught my husband how to set up and administer the antibiotic and so we can do it on our schedule (which I do in the evening just prior to dialysis). The down side is that Medicare requirements for home nursing care means you're supposed to be home-bound and can't get out to get treatment elsewhere. So for now I'm under "house arrest" with limited allowances for socialization (what a hoot!). The nurse will be back here on Monday for the dressing change on my PICC line and I intend to ask her then if she knows how long the treatment is prescribed for. When talking with an office nurse yesterday afternoon as I was trying to schedule a follow-up visit with the ID doctor, she said she thought I'd be on the IV antibiotic for a minimum of 3 weeks and more likely 4 based on her previous experience on how this doctor has treated patients in the past. She said Pseudomonas is one nasty bug and difficult to get rid of.
Angie, I just thought I'd let you know that I also don't know "exactly" how I got this bug. I've got pretty good sterile technique but apparently this bug lives in water and also in the human bowel. Therefore constipation can be a cause as well as just water from your shower. I was on PD previously for 4 years prior to getting my last transplant in 1987. During those 4 years I experienced 2 cases of fairly severe peritonitis but they have not prevented me from still being able to do PD today. When I needed to go back on PD, they performed a PET test. A Peritoneal Equilibration Test known as a PET test, is used to find out whether waste toxins pass quickly or slowly from the person's bloodstream and into the dialysis fluid. If the toxins move quickly, the person is called a 'high or fast transporter'. If the toxins move slowly, the person is a 'low or slow transporter'. Even though my bouts with peritonitis have caused some scarring, I can still dialyze this way although I'm considered a slow transporter. As a result I have to do more exchanges each night with longer dwells each time. (6 exchanges with 1 hr. 15 min. dwells.) I don't mind the time involved since it's so much more preferable to me then hemo. You might just want to ask your doctors if there wasn't some way to perform this test on you to see if PD might not be a possibility for you again. That is if you'd prefer PD over hemo. They might still say no but then again they might just say Yes. Can't hurt...might help!
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Hi MiSSis, Sorry to hear you caught this "damn bug" :( but i am glad to hear that your doing better and that you are home. Please keep us posted on how you are doing, hopefully now that you are *ahem* on house arrest :P, we will be seeing a little more of you here ;) Looking forward to hearing from you again, Take care and Godspeed :cuddle;
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Unfortunately pseudomonas is a difficult bug to treat - I have a patient with a p.aeruginosa exit site infection and we've been able to fend off peritonitis so far but she has been on Gentamycin in each exchange for almost four weeks now. Good luck!
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:cuddle; Hi MISSis.
I am sorry to hear of your late night dash to the ER. I am glad you are now at home with nursing care. Its much better than being stuck in hospital. Peritonitis is the only thing that I am always paranoid about being on PD. I have been lucky up until now (touch wood) and have avoided any infections.
I wish you a speedy recovery.
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Perionitis is so painful. I experienced it twice. The place of exchange and no carpet definitely. I did not know what kind of bugs I got.
Take care and becareful.
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Unfortunately pseudomonas is a difficult bug to treat - I have a patient with a p.aeruginosa exit site infection and we've been able to fend off peritonitis so far but she has been on Gentamycin in each exchange for almost four weeks now. Good luck!
There's something I don't quite underastand about exit site infections. As I understand it the tube travels just under the skin from the exit site for about 3 inches and then down into the peritoneum. Along this three inch area the skin seals tightly round the tube so how can an exit site infection travel to the peritoneum. I thought the only risk from peritonitus came from from any contamination that went down the tube itself and directly into the peritoneum. The policy of my healthcare trust is to keep a dressing on at all times changing every other day using Betadene and Bactroban ointment but I know for a fact that certain Health Care Trusts in Britain allow their patients to wear no dressing at all except to achor the cather with tape to prevent trauma. I know someone who has been doing this for 3 years and has never had an infection. At the end of the day isn't it just similar to a body piercing? If a body piercing got infected the infection would not go through to infect a major organ would it?
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So far no sight of exit site or tunnel infection. All indications lead to me getting this bug internally, probably from constipation. (Sorry for the graphic detail!) I have another 4 IV antibiotic treatments left unless blood tests indicate I'll need more. It's been a rough recovery. Even after coming home from the hospital, I was dizzy and nauseated for a couple of days but that seems to have finally resolved itself. The antibiotics seem to make me restless and I'm having trouble sleeping so I'm extra weary during the day. I have meds to help with sleep but hate to take them too often as I'm worried about dependency. Those nights are when I wish I had a laptop! I'm looking forward to being off of "house arrest". My husband's been able to get out and play some golf and I'm glad he's getting the break. Even I'm getting tired of my company!
Note to self: Eat plenty of fiber and take colace. Do all you can to prevent this from happening again!