Received bad news on my PD treatment

[komomai]

After battling for a month with a infection, my Dr. advised me to take out my PD.  This was a strange one after the first 10 days of receiving anti-biotic drips and shots, it looked like the infection disappeared fluid output was clear and I felt great.  While I being treated for the infection, I asked my Dr. if I could do a couple of hemodialysis sessions to remove my water build up.  After 2 painful treatments they pulled a total of 6.5 kilos of water out of me.  I felt great, energy level back up then one morning after doing a 10 hour hookup with the cycler my fluid output was crystal clear, but on the afternoon exchange it was cloudy and I started to get some stomach pains.  Went to the ER on Sunday and they started the same treatment again, this time my Dr. thinks that the infection is on the end of the PD tube stuck in my belly.  And with that reasoning the PD tube should come out.  I had a rough time putting the PD tube in so I asked don't you have any other anti-biotics that they could try?  Why yes they do so now I'm on day 4 of having the new anti-biotics and so far, my fluid is now coming out clear, the strange thing is that at the end of the drain, I'm having some pain, Dr. said it was drain pain, but I've had the drain pain before and this feels different.  So I'm off to check in to the hospital to continue my anti-biotic treatment and to put in a chest catheter, I'm thinking if my PD tube needs to come out I will ask for a cuff catheter vice the fistula as my Dr. feels that my veins are to small and very difficult to get to.  I think my PD days are numbered.  Sorry for the long rant. 

[amanda100wilson]

you could have a graft possibly.  Lower infection risk.  They really do not like catheters for long term HD use.  What type of hemo do you think you would go for, in-unit, or home?  I do the latter and cannot speak highly enough of it, compared to the alternative.

[billybags]

I know it is a pain in the butt having your PD tube pulled. It has happened  to my hubby  when he had e-coli and they could not kill the pesky bug . He had to go on hemo for 3 months and then they reinserted another cath. Since then , fingers crossed it is working well. Perhapes you could ask your neph to reinstate yours after a period on hemo.

[MaryD]

When I managed to have a recurring peritonitis (three times in three months) my PD catheter was removed for four weeks and then I had another inserted.  It was rested for two more weeks and then I started PD again.  I been going like a house on fire ever since with no problems. 

Hoping you get you PD function back again.

[komomai]

Mahalo for all the good advice, they did an emergency surgery on Sunday.  Due to my size which is larger that the avg. Japanese, they went with a general vice local I protested as I don't like tubes down my throat, but I figured since they would be knocking me out I should be good.  Well the beginning went okay and I don't remember anything.  But when they were finished, in my mind I couldn't move or open my eyes but I could feel the tube down my throat,  As I regained my conscious I start fighting by moving my head side to side and then I started biting down on the tube.  Tube was quickly removed and I looked over at the surgeon and said see I told you I don;t like tubes stuck down my throat.

They also mentioned to me that the PD tube was covered in pus.  Because of that they are leaving the incision open and cleaning it and stuffing it with gauze.

So I am stuck in the hospital with no PD and a temp. chest catheter  so I can do hemodialysis , I also have a constant cough so guess what?   When I cough my open stomach hurst.  So todays hemodialysis went we me moving around from coughing to much , the nurses stopped the treatment after 2 hours and constant coughing from me.

I'm doing all this in a Japanese hospital, they make you lay down in a bed I asked about dialysis chairs and got the are you nuts look.

I wish I had done this back in Hawaii on the 3rd of July, but my Japanese doctor advised against going to the states.

[Grumpy-1]

Komomai   I had to have my PD tubing removed for infections too.  That was in Dec.  BUT - good news for me is that I'm having the PD tube put back in in 2 days.  Finally, get back to PD.  I'm sorry you've had such a rough go of it.  Hopefully, when this all clears up you can go back to PD too.  Grumpy

[komomai]

Aloha Grumpy, thanks for the words of encouragement.  Yes I would rather do PD in the comfort of my own home, going to the hemodialysis center is depressing.  Although the Japanese  are great.

[Whamo]

Sorry to hear about your infection problems.  I've been on CAPD for about six months.  So far so good, although I still have trouble keeping my fluid levels down.  I dread the day I get an infection, even though I know to expect it once a year.

[Grumpy-1]

Whamo   Just do as they tell you, no short cuts. That was my problem in the past.  For me, not going too great.  Had the new PD tube put in 2 weeks ago.  But it isn't filling and draining like it should. So, I was back at the hospital today.  It appears the end of the tubing has become in cased in tissue and the folks at the hospital couldn't free it up.  So, they put in some stuff that is suppose to dissolve the tissue around the tube. If that doesn't then I guess it is back to surgery to fix.      Grumpy

[komomai]

Wow Grumpy, hope it works out for you.  And your  100% spot on with no shortcuts, which caused me my infection problems.  Right now been in the hospital since July 4 and my Doc says maybe 2 more weeks.  I'm on my forth chest catheter which has been very painful.  Been doing hemodialysis now for a month, 3 days a week, pulled off 10 kilos of water/weight. Now  fighting lack of O2 which causes me breathing problems and feels like i'm having a heart attack, my Dr say's it's more excess water build but I don't know about that, they have been pulling water out of me now for a couple of sessions at least 4 litters a session.  I am on night 2 of having breathing issues so I'm on we shall see about the excess water as I'm scheduled for a dialysis session tomorrow.  I'm so depressed as I seem to encounter one problem after another.  Still battling my 2nd infection with antibiotics.   I need a break.   

[MaryD]

Hang in there, komomai.     

[Grumpy-1]

Update on me.  I was in the hospital for the last couple days.  Low blood pressure was the cause and the cause of that was internal bleeding where they put the PD cathater.  So, now going to PD is out because of the scar tissue that has built up and so I'm non hemo until a transplant comes along.  Looking at home hemo,  For those folks doing home hemo can you give some advice on it.  How hard, what are the limits in traveling?  Do you like it better than in clinic sessions?  Did your caregiver have any problems in learning how to stick you?  I'm sure I will have a 1,000 more questions as I'm moving toward this. Thanks in advance   Grumpy

[komomai]

Wow sorry about the bad news regarding PD.  I looking at scheduling a cuff catheter for tomorrow or Sat.  Good luck with the home hemo-dialysis.