I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Darthvadar on March 14, 2009, 01:28:14 PM
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Hi everyone...
Would appreciate you input and advice, please...
Mum is 71 years old.... Was diagnosed with ESKF in May '07... This was as a result of waiting too long for an illeal conduit/urostomy operation to deal with urinary incontinence... She developed a reflux while waiting, and her kidneys failed...
She went onto Haemo in October '07... She had her AV Fistula op in August '07... She had a Permacath, but the first one became infected while in hospital, and the second one stopped working... So they were forced to use a very poor, immature fistula that was NEVER ready to be used... Needless to say, Haemo was Hell for Mum... Taking up to eight attempts to needle her... She was VERY stressed... So much so that she was crying as she was going out to the taxi to go for dialysis, and was vomiting as she got home... Then taxi problems were a nightmare... My mum is a wheelchair user, and it was often taking up to five hours for her return, wheelchair accessible taxi to arrive... People on the next dialysis shift had completed their treatment and had gone home, and Mum would STILL be waiting for her taxi... Life became unbearable for her, so we approached her Neph. about PD, and he agreed...
She started CAPD in late Oct '08... And the plan was to get her onto APD in about three months... Then in mid December, she got a chest infection... Locum doctor called, and prescribed antibiotics and steroids... But on Saturday 20th Dec, she had a cloudy bag, and was taken to hospital... A peritonitis was confirmed, and her chest infection turned out to be pneumonia in both lungs... She spent eleven days in hospital, and at one stage it didn't look too good for her staying on PD... They wanted to pull the tube and put her back on haemo... Mum said 'No'... She wasn't going back onto haemo... It was PD or nothing... And her neph. DID agree that her fistula is VERY poor... She got over the peritionitis... Was doing well until Jan 31st... Exactly one month following her discharge, she got another peritionitis!... This time she was in hospital for eighteen days... They brought up the issue of haemo again... What she said was unrepeatable in polite company, and even in impolite company!!!... But she has remained on PD by the grace of God...
They did try her on the APD machine, but that wasn't to be... The machine just doesn't work for her... There are people for whom the machine just doesn't cut the mustard... It doesn't drain out the fluid efficiently... Mum GAINED a kilo and a half of fluid overnight... So the machine put more fluid into her than it took out... She was VERY puffy around the eyes and face the day after, so it was abandoned... Pity, but there you are...
What I'd like to know is have any other IHD's had recurring peritionitis???... How often???... Have you had to stop PD???...
Thanks everyone...
God bless and protect you all...
Love...
Darth...
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My husband Marvin was on PD briefly (a couple of months) in 1997. He had been on in-center hemo from 1995 until 1997. He had one kinked catheter (had to be straightened -- ohhhhhh, so painful -- and then replaced) and two bouts with peritonitis. Marvin made the decision then to go back to hemo because he said he just couldn't take that any more. He stayed on hemo until he got a transplant in 2000. In 2003, his transplant contracted the same disease (IgA Nephropathy) that destroyed his original kidneys, and he had to go back on dialysis. His doctor asked if he wanted to try another round of PD, but Marvin said, "No, I'll go back to hemo." He's been on hemo ever since (but on HOME HEMO for the last 20 months -- :yahoo; -- it's so much better for him).
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Hi Petey...
Thanks for that....
Yes, I looked into the Home Haemo option, but would you believe it's not yet available in Ireland... ::) ::) ::)... I couldn't believe that we are so far behind other countries in this regard... And there are no suggestions as to when it will be available!...
I don't want to see her be as distressed again, as she used to be when on haemo...
Really appreciate your help, and I'm really glad that it's working out for your husband...
God bless,
Darth...
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I've been on PD for over 5 years now and am currently using a Fresenius cycler and dialysing at night. As far as proper draining is concerned, the level of the machine in comparison to your bed is very important. If the bed and machine are too close in height, the fill just won't work well. And if the bed is too low, then drainage can become a problem. That's one of the reasons why I like the Fresenius cycler is that it comes with it's own stand, which can be adjusted in order to obtain the correct height. We just got a new feather bed mattress cover for our bed which added about two inches in height and I was concerned that I might have a problem with filling and draining properly but luckily no problem. I'm not sure what your mother's machine looks like but perhaps you can find a way to raise it to make the draining easier.
Here's a link to several pictures of my home setup:
http://ihatedialysis.com/forum/index.php?topic=375.msg53617#msg53617
There are quite a few pictures of people's home setups in that thread that might give you some ideas on how others have made adjustments.
The thing about doing manual exchanges is that you expose yourself more often to the potential of catching some sort of bug. So a very clean environment and good technique when setting up the machine and connecting the patient is a must. When I first went on PD, I found myself dealing with several cases of cloudy fluid. These were minor enough that I was able to treat myself at home using antibiotics provided by my nephs. I just added the antibiotic to my solution bags each night for a week or so along with taking some oral antibiotic. We think we traced the source to an overhead fan that we had in our bedroom. We had always just left it on but after turning it off while setting up and hooking up, my problem was solved. My one major bout with peritonitis that landed me in the hospital for 5 days and then on home IV treatments for another 2 weeks was traced back to (believe it or not) constipation. The bug I had developed was finally diagnosed as Pseudomonas Putida. That episode was almost 2 years ago and since then I take a daily stool softener which also contains a mild laxative. I've had absolutely no problems with peritonitis since that time (knock on wood!). I guess what I'm trying to tell you is to look around where your mom is dialysing and just think about what might be a potential hazard. It could be something very simple (like my fan) or it could mean a slight change in medication or even a minor change in technique. It takes so very little to get an infection but it could also take just a little to prevent it too.
There are some people here at IHD who have had their catheters removed because of peritonitis but I haven't had to do so since I started back on PD 5 years ago. In any of my cases of peritonitis, my catheter and exit site did not become infected so there was no reason to remove it. My neph will only remove a catheter if he feels it's become infected also.
I'm not sure if I've been able to help much but maybe I've given you some ideas to think about. Many times I've found answers here at IHD that I couldn't get from my PD nurse because she has so few PD patients (only about 12) and therefore hasn't experienced some of the things that can go wrong. I wish you and your mom lots of luck. I'm like your mother, Hemo is just not for me and I will do PD as long as I possibly can.
Take care and be sure and continue to ask lots of questions. It's the only way to make sure things will get better!
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Hi MiSSis...
Thank you SO much for your reply...
I've been rattling my brain (what little of it there is!)... but I can't figure it out... The constipation issue is VERY interesting... Because Mum has Diverticular Disease... And the neph. said that the particular bug comes from her bowel... We are VERY careful about hygene... Mum won't even do an exchange outside of the house... Because she doesn't have control over hygene... She dialyses in the Living Room (No fan, no open windows)... This is all we use this room for... (We have different tastes in TV, and radio, and spend more time in the bedrooms, or kitchen)... The floor has linolium tiles, the chair she sits in has a leather effect covering, and her preperation table is glass topped.... all of these items are wiped down with Disinfectant Wipes three times a day... We only use Antibacterial Liquid Soap, and use gallons of Hibisol Hand Hygene solution... So my gut feeling is that leakage from the bowel is the culprit... She is on medication for that...
Thanks for that... Much appreciated... Really think that this site will be very useful...
May God bless and protect you...
Love...
Darth...