I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: MaryD on June 10, 2012, 01:53:06 AM
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Just home from my third bout of peritonitis - recurrent. Next step is the removal of the catheter. OUCH. Then I get rested for a week or so and we have another go. My adequacy is still thought to be very good. Doing a 24 hour collection tomorrow to see how much kidney function is left. It is hoped I can get by with great care till the catheter is replaced. I expect I'll have to change my diet, too.
Anyone been there?
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Wait a minute...are you saying you won't be having any dialysis for about a week? And that your docs think you have enough residual function to get you through that time? That's really interesting! I hope someone on PD will post an answer to your question, and I hope you will let us know the results of your 24 hr collection.
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It is true that if your 24 hr collection shows enough clearance, you can probably be ok for a little while without dialysis. You should be careful about what you eat and drink.
I'd be more interested in why you have the peritonitis. Do you just never get rid of the same infection? I would want to know how to keep from having that problem again.
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I had the same problem, where I kept getting peritonitis a lot in a very short period of time and my Dr told me the infection was in the catheter . She never stopped D with me probably for the reason that I don't urinate at all and would have no way to clean my blood. So I ended up having to go thru surgery to replace the catheter. After that the infections stop. Good luck and I hope it all works out for you.
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Wow, Mary 3 times!!! That is 2 times too many. Hope they get it straightened out for you promptly. :grouphug; :grouphug;
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Of course I had to get my latest bout of peritonitis at the beginning of a long weekend. Catheter removal discussions start tomorrow.
My first lot struck on 30th March and was followed by two weeks of antibiotics in my 7.5% bags at night. Second dose got me on 30th April - three weeks of antibiotics. Last one - 9th June. It seems to be the same bug. I'm supposed to have a very good preparation and hookup technique (the ex-nurse in me coming out), so I still don't know how the original infection started.
Every time each day started out with me feeling really good, with clear drain bags. By lunchtime I had a mild windy stomach ache, and by 4 - 5 pm it was on for young and old. I caught it early each time so it was not as painful as I had been led to expect. I am not lining up for a fourth bout though, if I can avoid it.
I have a feeling my non-dialysis time might be longer than one week. It sounds as though it depends on the surgeons. If the worst comes to the worst I will have to have emergency HD. My veins are too crappy for a fistula. I will be eating and drinking SOOOO carefully, in an effort to avoid HD.
At least I am on Renagel and Sensipar since I started dialysis so my phosphorous and PTH wont be as hard to control (I hope)
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Mary, I really feel for you and I hope things go well. Have they told you what bug you keep getting. Some times it is not all about hygiene (our nurse would say it is) it can come from with in, like bowels. They must know what infection you have.
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I had one go around with peritonitis and that was enough. Thought I was having a heart attack. So the hospital spent the first day treating a heart attack. Then they realized (through tests) that is was peritonitis and began treating that. They pumped me full of antibiotics and even pushed some down the PD tube directly into the PD fluid. All that took care of it after a couple days. I never did stop PD during that time. Grumpy
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I haven't had those issues Mary, at least not yet (knock on wood). Hope it all comes out ok.
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I haven't had a peritonitis yet... and I'm trying to avoid it as much as possible. My nurses tell me it's very painful when I get it, and that it feels like someone's punching me in the stomach. I've only been on dialysis for about a year now.
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A little over a year ago i had 4 bouts of peritonitis concurrent and they pulled my cath and I had to go on hemo dialysis for 6 months and then they said I could go back on PD. I like your plan MUCH better. Fight to get back on PD! I wish you the best!!!!!
:flower; :flower; :flower;
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The Plan - as I understand it!
Surgery to remove catheter within the week. If my drain fluid seems clear of bacteria (tested shortly) a new catheter could be placed straight away. If it is I will be off dialysis for a week or so to settle it in. I heal very quickly, so I hope this will be only a week. Then dialysis can start using smaller volumes than I use now.
Meanwhile, my extraneal bag at night is being loaded up with antibiotics by Hospital in the Home each day. Feeling pretty good - may it stay that way.
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i had this exact experience this past summer, turned into an absolute nightmare. i would get and infection and do the antibiotics for 2 weeks completely clear up, and not even a full week later the infection would return, although the second 2 times i caught it early so not much pain. my nurse and the nephrologist on call decided it would be best to remove the catheter for about they said about 4 to 6 weeks, and during this time i would do incenter hemo, had a cath in my chest and hated every minute of it. i had a lot of issues trying to get bnack on pd, ive posted about that in other thread. i really hope u have smooth transitions both ways.
and the pain of peritonitis, is like somebody taking knifes and slashing away at ur insides, and laying down does not let it release.
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I've just had 12 hours notice that I am to be down at the hospital in the morning at 7. Sounds as though I will have to wait for a new catheter to be installed. Bummer! Keep your fingers crossed.
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Fingers are crossed for you Mary . Hope it all goes well for you !
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MaryD, How did things go? Good I hope. Thinking about you.
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CATASTROPHE!! My jeans are now too large.
Just back from hospital sans catheter and with a flatter belly. Apparently the bug I had acquired had managed to work up a resistance to the antibiotics I was taking. Stayed overnight in hospital mainly because I live by myself, and because they were working out which new antibiotic would be best.
A new catheter will go in in 4 - 6 weeks. Meanwhile I eat carefully and go down to the home care clinic every week instead of every 6 weeks.
My son also is getting married in 6 weeks - what a busy life I will be leading.
I feel very good at the moment. I can't praise too highly the staff at the hospital - the surgeons, anaesthetists, renal doctors and nurses and ward staff were all wonderful. Ward 2 East is becoming like a second home for me, which is probably not all good.
It's good to be home.
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So glad you are home Mary, have you started doing hemo yet, and how are you finding it. Four to six weeks will go quickly and then you will be back in control with your new catheter. Take care..
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Billybags
I'm hoping to get through the 4 - 6 weeks without haemo. I've only been on PD for 6 months. My kidney function decline was quite slow. My eGFR figures sank quite gently. From 23 to 17 took 3 years. 17 to 13 another 18 months, then I bobbed up and down between 13 and 9 for six months before PD was started. I was always careful with what I ate, so everything except my PTH levels and creatinin was reasonably under control.
I have my first post PD blood test next Tuesday. I will be very interested in the results - hoping they show I might last without PD. I have been told that it's instant haemo if things go pear shaped.
Fingers crossed!
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Mary, hope all goes well sounds like your really careful with the diet which is super good.
I've had one bout of peritonitis, the Japanese hospital told me to come in for a week so they could hook me up to the antibiotics. I also use the Baxter UV machine to hook up so I don't physically touch the end of the catheter. Works great, hang in there.:boxing;
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First test results back five days after catheter removal.
All numbers are Aussie numbers.
Potassium up from 3.8 to 4.2: phosphates 1.56 to 1.54: creatinine 405 to 391. Not a lot of change except for the potassium.
Amazing turn up though - my foggy thinking returned four days after dialysis stopped. While I was in hospital I was reading a gripping novel (a murder, political intrigue, international espionage etc etc). I got 3/4 of the way through it in three days. On day four I tried to finish it off. I could not make sense of any of it. I struggled to finish it - had trouble remembering the names of the characters - had to read paragraphs again and again to understand what was happening.
I also had trouble driving to the supermarket - had to think hard to recall the way. Foggy brain is back with a vengeance!
When I started PD several people told me I would not notice any real difference in the way I felt for 4 to 6 weeks. On day four I was suddenly and unexpectedly ALERT. That has just as suddenly and very disappointingly reversed.
Overall, I still feel pretty good.
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Glad you are feeling good except for foggy brain. Keep us up to date.
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Hi Mary , Just a quick Hello and sending you good wishes . I hope you continue to do OK without dialysis . Foggy brain hopefully will not last long . Stay warm .
Brenda
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Amost two weeks out and I'm still doing fine.
My eGFR has actually jumped from 9 to 11. My diet (self imposed) is a little boring though. I realised a few days ago that it was practically all grain-based - couscous, rice, porridge, pumpernickel, with very little protein and/or vegetables. I am not at all tempted though. The thought of emergency HD keeps me on the straight and narrow. I figure if people in Africa can live on a maize-based diet their entire lives (short though their lives might be) I wont starve in six weeks.
Along with foggy brain, the pre-D constant low-grade headaches have returned. Otherwise I feel OK. I also have Sensipar and Renagel working for me, too.
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Still hanging in there three weeks out. My numbers are still OKish, and I'm game enough to be a little more adventurous with my diet. I'm having minor fluid retention problems. Doubling the dose of Frusemide seems to holding that at bay. More pre-D complaints are returning and some things are happening which hadn't happened since starting PD but which I hadn't realised might be connected to ESRD. I'll be very interested to see if they disappear when I'm back on D.
With a little luck my new catheter goes in 24th July, and if my numbers are still hanging in there, the catheter might get a couple of weeks to settle in.
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Glad to hear you're doing ok. Hang in there.
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So gald this hiatus from D seems to be working for you! So glad you got this option. i went straight from PD to hemo. Never knew there were other options...
You keep on keeping on!
:flower; :flower; :flower;
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The only thing I'll miss when I'm back on PD is the ability to leap out of bed and fly off to the farmers market before it gets crowded. With CAPD I need to do an exchange before I leave home. There's no way I'll use a machine for PD - I'm allergic to machines.
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Mary , So glad you are doing Ok without dialysis . I hope you are taking things easy though and not putting too much strain on your body. Did you manage to get some help with the housework ? We hate Laurie's machine - we have named her " Big Bertha " and she gets sworn at frequently !
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Brenda - Today is our first sunny day for yonks. I am planning on gardening which will involve manhandling bags of cow manure from one side of the yard to the other. Tomorrow I am planning on not putting too much strain on my body.
The housework help is quite strange. They concentrate on the floors and a lick and a promise in the bathroom. I am going to try and convince them to leave the floors (I have no trouble with floors) and do the front of my kitchen cabinets instead. I cant hold a cloth and rub at the same time - (major peripheral neuropathy from chemo three years ago) The side of the cabinet where I do my exchanges is splashed with betadene and I cant get most of it off.
I love my machines when they are working properly. I have only two that matter - the car and the computer. They don't let me down (touch wood). I couldn't cope with a machine that sounds alarms at me and then expects me to sort it out.
Best wishes to you and Laurie. Several purrs are coming Laurie's way
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Is your home help from the council ? I used to clean houses for a living and they are there to do what you want them to do . Are you designated so many hours a week/fortnight ? Explain - nicely , that you can usually manage the floors yourself and could they please use the time doing this and this . Tell them a lick and a promise is not good enough especially in the bathroom - a proper scrub please as you are on dialysis and susceptible to infection .
Interestingly enough I have been researching peripheral neuropathy to see if that could be an explanation for Laurie's collapse last week . The doctor would not see him until this coming Monday ,but did send the PD nurse out to see him yesterday , she took some bloods and had a chat with him . He had an appointment with the podiatrist on Wednesday , my son in law took him in the wheelchair and they say he has a major infection in his foot . The doctor there wanted to put a PIC line in and start antibiotics that way but Laurie was far from keen so is on very strong oral ab's .Will see what the doc says on Monday - maybe it was not kidney related .
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Brenda - Home help is from the council. I'm about to have my third visit tomorrow - 1.5 hours per fortnight. I was going to ask for a change in their routine and I always ask nicely (the way I would like to be asked) They have been lovely people who've come but I haven't acquired my 'own' cleaner yet.
My peripheral neuropathy is really a bit more than peripheral. My oncologist sent me to a neurologist. Apparently the long nerves have been affected. Along with very little sensation in my fingers and toes, I have legs that from time to time don't do what I expect them to do. My left foot will suddenly start dragging and I have to recalibrate my steps every 50 metres or so. My right leg suddenly veers off to the right and because I don't notice and my body weight is still going forward I stagger around like a drunk. The police stopped me down at the local shopping centre at one stage because they thought I was inebriated. I can have a period of a week or so where I walk normally, and then three weeks of trying to look sober. I have adapted over the last three years - I prefer to walk on a level surface with lines on it, I have a walking stick in the car, and I walk in such a way that I can keep an eye on my feet. I cannot walk and hold a conversation at the same time. It is worse when I'm tired. I'm the only person I know who can trip over the wheels of her shopping trolley at the supermarket.
Laurie's major infection could be because he didn't feel the start of the infection. Twice I have noticed in the shower that I have a bruised toe and I have no idea how it happened. I hope something can be sorted for him on Monday.
No purrs today - the cats are too busy sitting in the sun.
PS My hands and arms are affected the same way. I have to hold a cup with two hands. After spilling a full cup of coffee down the front of me while eating out, I have learned to hold a cup with two hands elegantly. At least I tell myself it's elegant. I also misjudge distances when I'm picking things up or putting them down. It makes for an exciting life!
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Mary , Well you and Laurie make a right pair ! He has problems with judging distances , pouring drinks etc and is always walking into doors and walls , this is because he only has one eye or so we think . What kind of tests do they do to determine whether you have damaged nerves ?
One and a half hours is not much for home help is it ? It takes me that long just to thorough the bathroom - mind you I am built for comfort not speed ! They should be able to clean the bathroom properly and the front of your kitchen cabinets in that time though . When I was cleaning I preferred to charge by the job rather than the hour . I figured if someone is paying you to clean their house then they deserve a thorough job - you can do a lick and a promise yourself . It was less pressure for me not to charge by the hour and meant I could be satisfied I had done a good job .
The cats are reconnected to Laurie - they are with him 24/7 . Maybe it's because he is always near the heater and they love the heater !
Hope you are remaining to feel OK .
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Brenda - Nerve damage tests consisted of having a giant tuning fork placed at various places on my arms and legs. And also a little poke with a mini cattle-prod to see what reaction my arms and legs made. Done by a technician. It took about twenty minutes. Also a "Can you feel this" with a little sharp object. I was waiting for him to start, but he was jabbing away and I didn't know. Not too traumatic.
Glad to hear about the cats!!
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Twelve days till I get my catheter back.
My phosphates are too high, and my urea level is closing in on disastrous. I'm removing all high protein stuff from my diet. I had included a little since my previous numbers were holding at 'good'.
I still feel reasonably OK - I should make it without emergency haemo. Fingers crossed!
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Mary, good luck for your last 11 days! Just don't do anything really silly!
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Apparently things are not as good as I thought. I was asked to go down to renal clinic yesterday as my favourite renal registrar was concerned about my low bi-carb blood results, and my weight loss. He decided that I needed to take bi-carb capsules as I can never remember to take bi-carb from my kitchen supplies. Also he says I seem to have extra fluid around my lungs although the rest of me looks fairly OK. He now expects me to retain more fluid because of the bi-carb and has upped my dose of Frusemide.
I was sent home with instructions on what to do if I should have shortness of breath or chest pains etc etc. He is fairly confident that I'll make it though with haemo. Much finger crossing required!
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All fingers and toes crossed for you at our house Mary ! Please heed the instructions .
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Just got home from getting my brand new catheter. I'm feeling pretty good, but I am carrying about 6 litres of excess fluid.
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Very good Mary! Hope you pull that fluid off quickly.
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Fantastic news - you made it without emergency heamo ! How long before the new catheter can be used ? Hope the fluid comes off quickly .
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It would be best for the catheter to settle in, which it should by August 5th. In an emergency apparently I can do small dialysis exchanges rather than haemo. I'm off to the renal clinic Friday for the dressing to be checked. I sprang a leak so I'm on vancomycin and another antibiotic as a precaution. Looks good so far and no discomfort.
I've already dropped 1 kg in 24 hours with minor fluid restrictions and double/double dose of frusemide. Feeling really positive.
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I made it! Started PD again last night. I'm carrying a bit of fluid, but most other levels are not too bad. Now I can start eating real food again.
Colour me RELIEVED!
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Well done !
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Well three months after peritonitis and starting PD again, my PET/Adequacy results are back - rather disappointing. I've gone from a low transporter to a high transporter. My numbers are generally good, and there are no changes in my bags. No major changes immediately down the track. But disappointing for someone who was hoping PD would last her for ten years. (I will always shoot for the stars)
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Mary , Hopefully this is a temporary glitch . Maybe after no dialysis for a while when you had the new catheter put in and waited for it to heal put things askew and it is taking a while to catch up . Here's hoping your next test is better and PD will suffice for a LONG time . Continue to shoot for the stars .