I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Ken Shelmerdine on December 21, 2008, 07:42:03 AM
-
I've just spent the most miserable 2 and 1/2 weeks of my life hospitalized with peritonitis. And to top it all I've had to have the PD catheter removed and a Tessio Line put in my neck for Haemo.
It started on the 4 December when I got these stomach pains at work, not too severe but unpleasant nevertheless. I went home, took some paracetamol and went to bed for a couple of hours. I hadn't given a thought about the possibility of peritonitis just thought I might have a stomach bug or something until later when the pain had become much worse. It's now dawning on me that something seriously might be wrong so I did a CAPD fill and settled down to try and watch some TV but over the next 2 hours the pain was agonising and when I drained off the fluid it was cloudy.
My friend and neighbour Mike drove me to A&E where they admitted me. Although I'd taken a sample of the drained fluid they did another manual exchange and the drain from this one was like pea soup! With strong introvenous antibiotics and strong pain killers the pain became just about bearable over the next week but it was clear that the infection was rumbling on.
The Doctor said the infection is one of the most difficult ones to eradicate (Pseudomonas) and has probably infected the catheter so I have had to have surgery to remove the PD catheter. I have had two sessions of haemo with strict intructions form me 'NO UF. TOXINS ONLY' which I think they have abided by because they used a slow pump speed and a short 2 hour therapy but I have noticed that after the treatment I get very sweaty and clammy and feel a bit week in my legs. This really pisses me off because it was ten days between the catheter being removed and my first haemo and in that time apart from the soreness of the surgery wound I had no symptoms of Uremia or any of the other problems associated with kidney failure and as soon as I have dialysis which is supposed to be good for me I feel shitty. I am still not discharged from hospital just home for a weekend break. I have to go back Monday and hopefully back home for Christmas.
I've not yet decided whether to do PD again, the pain from peritonitis is something I never want to experience again. If I decide on haemo I have to stay admitted to hospital but with bouts of home leave until I get a regular haemo slot. There is no internet access in hospital so I'll post next time I'm home
Love to All
-
What a way to spend the month. I hope you feel better soon and things work out!
-
Ken - I'm so sorry this is happening to you. I know exactly how you feel. I spent the first week of Nov '08 in the hospital due to Peritonitis caused by my constipation and Ecoli sipped thru the wall of my intestine. I know too well the agonizing pain you describe. I was very fortunate that my catheter didn't have to be removed. I've been so peranode since my incident. Everytime I have pain in my abdomen I think Peritonitis. I'm still doing CAPD and praying each day to be cautious.
Feel better soon and please keep us posted on your progress.
-
Oh Ken, that's terrible. Sending you a :cuddle; , which isn't much, but it's heartfelt. Hope you get things worked out quickly. Being in the hospital around the holidays doesn't sound like much fun at all.
-
Ken, how bloody awful. And at the holidays too. I hope you get back on track and feeling more like your former self ASAP. I look forward to your updates on how hemo goes for you.
-
Sorry to hear Ken, hope you feel better soon.
How nice that is to be able to go home and back o the hospital, wish they did that here in the States.
Get Well soon.
-
Hey, Ken, I know how you feel. The same thing happened to me, and you can read about it at http://ihatedialysis.com/forum/index.php?topic=11298.0 Like you, I had to have my catheter removed and I'm on hemo for awhile. However, peritonitis notwithstanding, I cannot wait to get back to PD. Hope you're feeling better now!
-
:cuddle; Oh Ken, I am so sorry to hear this. I hope you get to feeling better real soon. Take care and keep us updated. :cuddle;
-
:cuddle; Ken, I am sorry to hear this - it sounds very painful and I hope you're better soon. Adjusting to hemo can definitely wash you out. Hopefully you will get to enjoy Christmas and are improving each day. Take care.
-
:cuddle; Hugs Ken. I hope you are feeling better soon and are home for Christmas. :cuddle;
-
Well I'm back home again until Saturday the day after Boxing day when I'll then go back into hospital for more haemo. I hate it but at the moment the thought of having a new pd catheter fitted and the the risk of peritonitis again scares the shit out of me. Because I haven't yet got a regular haemo slot I have to stay admitted to hospital with a few home breaks.
I am having quite a gentle haemo 2 hours a session toxin removal only and no UF twice a week. Even so I still feel a bit washed out after a session.
In the weeks ahead I've got some serious thinking and decision making to do. I know that whatever dialysis slot I get my company will help me work round it with some kind of flexi arrangements or reduced hours and also I get paid in full up to twelve months sickness. But do I want a life of work and dialysis with all the reduction in leisure time that it brings? There's also the option of home haemo. The NHS will kit out a room for haemo free of charge or failing that they can install a portacabin in my back garden as a dialysis room complete with heating and hot and cold water.
On the other hand I could register myself disabled. Disabled living allowances are quite good in the UK and once you get that It opens up a host of welfare benefits. Rita would become my carer and would receive an allowance of a similar amount to that which she gets paid for her part time job at the moment.
I don't much like the idea of living on benefits but why not I've worked for 45 years and paid my taxes.
Right now I need to start eating properly again. General anaesthetic takes my appetite away for ages and up to now I've lost over a stone (over 14 pounds) I'm not really a happy chappie at the moment. I wish I could feel as positive about this as I did about APD.
-
Ken i am sorry to hear you are going through all this.
And it does appear you have some decisions to make.
All my best for your near future and decisions.
Get well my friend
P&K
-
Ken I'm sorry to hear this, you are right to think long and hard about your options but remember (as you say) you have worked for 45 years and paid your taxes and NI, you are fully entitled to take any benefits due to you. Life is too short to drive yourself into the ground, I hope you will decide to take it a bit easier. All the best to you and Rita for Christmas and the New Year
Rose x
-
Thank you all for your good wishhes. To all on IHD have A Merry Christmas and a Happy New Year. :santahat; :snowman; :christmastree; :rudolph;
-
Ken,
I'm sorry you had such a rough time with an infection. You have big decisions to make regarding your work. After 45 yrs of work, maybe you deserve time for yourself and your health. Good luck to you.
-
Ken
Hugs to you and your wife. I'm sorry you are feeling badly and hope this passes quickly for you. Remember you are number 1, so take care of yourself and if that means slowing down, do it.
Have a good holiday.
Ann
-
Ken, I was just following a link to something Okarol posted (homedialysis.org) and a few links from there I arrived at a page about presternal catheters for PD. It caught my eye because the article compares infection rates for presternal versus abdominal catheters (dated 2005) and suggests that there may be less infection with presternal catheters. Just thought I'd pass the link along in case it is something of interest to you:
http://www.homedialysis.org/resources/tom/200507/
-
dang it all Sir ken if it ain't one thing it's another. Hope you mend quickly.
-
Ken.....I will be keeping you in my thoughts. I SWORE I would NEVER get that infection, but I did, 1 month before my scheduled transplant. The pain is something you don't forget about very soon. I am so very sorry, hope your a "happy chappie" soon!
-
Ken, I was just following a link to something Okarol posted (homedialysis.org) and a few links from there I arrived at a page about presternal catheters for PD. It caught my eye because the article compares infection rates for presternal versus abdominal catheters (dated 2005) and suggests that there may be less infection with presternal catheters. Just thought I'd pass the link along in case it is something of interest to you:
http://www.homedialysis.org/resources/tom/200507/
Pelagia thank you for that I'm going to make some inquiries with my clinic although I don't think here in the UK they offer it but it's worth looking into. Thanks again.
-
Still not got a regular haemo slot yet so I am still officially admitted to hospital although I am home every other day between haemo. I think I can honestly say that now I really do HATE DIALYSIS. The days that I do haemo I feel completely worn out. During the night following haemo I sleep in a cold sweat all night. Is this normal? I just know that the longer I go without haemo the better I feel and when it's haemo day I'm wacked.
I'm doing 3 hour sessions now and it's driving me mad just having to lie there. It feels like a prison sentence. It works out more like 5 hours because when I'm taken down to the dialysis unit it's about an hour before someone is available to connect me up. When the 3 hour dialysis is up it takes about another half hour until there is a nurse available to take me off, and then I wait about another half hour until a porter comes to push my bed back to the ward which is on the other side of the hospital!
The regular haemo slots here in the UK are 4 hours x 3 days a week. I've told them there's no way I'm doing four hours.
I'm sorry to sound like a whimp but I'm been so used to living a normal life on PD and now I feel everything is spinning out of control.
-
So sorry about the infection :cuddle; to you and your wife. Ken do they offer nocturnal home hemo where you are. It is a really good gentle treatment. My husband has been on it for 2 1/2 years with no probems. It gives all your days free you just hook up to the dialysis machine when you go to bed basically same as the cycler just that you have 2 needles in your arm. If you have any questions you can pm me.
del
-
Ken, I was just following a link to something Okarol posted (homedialysis.org) and a few links from there I arrived at a page about presternal catheters for PD. It caught my eye because the article compares infection rates for presternal versus abdominal catheters (dated 2005) and suggests that there may be less infection with presternal catheters. Just thought I'd pass the link along in case it is something of interest to you:
http://www.homedialysis.org/resources/tom/200507/
Pelagia thank you for that I'm going to make some inquiries with my clinic although I don't think here in the UK they offer it but it's worth looking into. Thanks again.
Happy New Year, Ken.
Peleroja has a preseternal catheter, I think, so maybe she knows more.
I am sorry to hear about your trials. It makes me want to :Kit n Stik; someone. But for you a :cuddle;
-
So sorry about the infection :cuddle; to you and your wife. Ken do they offer nocturnal home hemo where you are. It is a really good gentle treatment. My husband has been on it for 2 1/2 years with no probems. It gives all your days free you just hook up to the dialysis machine when you go to bed basically same as the cycler just that you have 2 needles in your arm. If you have any questions you can pm me.
del
Del they don't recomend nocturnal haemo in the UK but I can do home haemo if I want to and I'm seriously considering this.
-
Hi Ken,
Good to hear from you. I hope you feel better soon. I'm with you about not ever wanting to feel the pain that comes with Peritonitis. We know it too well. When I had my first episode this past November, I thought I was going to just die. I'm doing the best I can to avoid the same mistake.
I pray I can continue CAPD as long as I can because I don't want to do hemo. It just doesn't fit in my life style at this time. Take care and continue to keep us posted.
Happy New Year! :wine;
~RG
-
Hope your doing better Ken.
-
Thinking of you Ken and hoping you are feeling better. :cuddle;
-
I hope all is well with you! Get back here soon! You are missed!
-
Hang in there Sir Ken. Sending good wishes in your direction...
-
Well Ive now got a regular haemo slot Monday Wednesday and Friday at 3pm. I completed my first 3 sessions last week . The center is about 8 miles from my home and I get free taxi cabs courtesy of the NHS. Here in the UK the standard dialysis time is 4 hours per session but I persuaded them for 3 hours at least until my adequacy is is known.
The clinic is only two years old and it seems very well run with all the latest Fresenious machines. They put you on as soon as you get there and take you off as soon as you finish and also as you leave your taxi is waiting for you so there is no waiting around.
My physical condition after haemo has been varied. After dialysis on Wednesday I got home feeling absolutely shattered with a banging headache and cramps across my abdomen. On Friday I mentioned it to the nurse and she reduced the pump speed to 250 and I came home feeling much better.
Also I've noticed that while on dialysis I get this dry tickly cough which comes and goes thoughout but stops the minute I finish the session. Anyone else experience this?
I've put my name down to do home haemo. Luckily I have an extra ground floor room which we had built on a few years ago to use as an alternate lounge/sitting room and it's big enough to keep most of the furnature when the dialysis machine and chair are installed. There is quite a waiting list for training so it will be a few months yet plus I also have to have a fistula built and matured first. They say the longest part of the training is learning to needle yourself properly. I'm a bit anxious about this but I keep telling myself that if useless drug addicts can do it then I'm sure I can!
Thank you once again for all your good wishes. It really does mean a lot to me. :thx; :grouphug; :grouphug;
-
Ken, Otto thought sticking himself would be the hardest but he is now a pro :grouphug;
-
I tell myself much the same thing about the needles Ken. I figure that even though "needler extraordinaire" or superb intravenous junkie was never my highest aspiration in life, if I have to have it done may as well do it myself and get good at it. You'll be fine, it's the mental part that's the tricky bit. :cuddle;
-
Also I've noticed that while on dialysis I get this dry tickly cough which comes and goes thoughout but stops the minute I finish the session. Anyone else experience this?
http://www.ncbi.nlm.nih.gov/pubmed/16636582
Not sure if this is the problem, but should give you some type of insight with regards your throat. My s/o is hoarse after diaylsys.
-
Just checking in Ken. I'm happy to hear that you are getting settled into a routine and that there is a possibility of home hemo. :cuddle;
-
Also checking in on you Ken....
Sorry to see the freedom of PD going but hopefully home Haemo will be the answer.
Thinking of you. :cuddle;
-
So sorry about the infection :cuddle; to you and your wife. Ken do they offer nocturnal home hemo where you are. It is a really good gentle treatment. My husband has been on it for 2 1/2 years with no probems. It gives all your days free you just hook up to the dialysis machine when you go to bed basically same as the cycler just that you have 2 needles in your arm. If you have any questions you can pm me.
del
Del they don't recomend nocturnal haemo in the UK but I can do home haemo if I want to and I'm seriously considering this.
Ken do they have a reason for not recommending it?? I'm just curious because it is supposed to be a much better type of treatment. It removes a lot more phosphorus and potassium. Hubby has been on pd, in center hemo and he much prefers the nocturnal. There centers that are starting to offer nocturnal treatments as well.
-
Ken, I know youare afraid to get peritonitis again, but having just had one tube removed and another put in a few days later on the other side, I have to tell you I am back up and running well and it is SOOO worth it not to have to go for Hemo. Please try PD again. It takes 4 to 6 weeks before you can use the tube, so get going!
-
Sir Ken, I hate that you have had such a hard time. Our little kingdom is missing you very much and all the lovely maidens are worried. I know Rita is taking good care of you. We miss you and want you to feel better. Sending love to both of you :cuddle;
-
My 11 month old had peritonitis about a month ago and he couldn't sleep that night at all. I thought it was an ear infection (he's had 3) and so I just held him and rocked him and he eventually fell asleep but I could tell he was miserable all night. I felt like such a bad mom when I got up to take him off the machine (and to his pediatrician) and checked his fluid bag. Luckily it cleared up fast. His nephrologist said we caught it really early. He said he had about 300 cells, whatever that means. I was already careful before but now I'm even more careful. My poor little guy, he was such a trooper through it. Now that I realize how painful it is I feel like even more of a jerk. : (
-
wow..that is an ordeal you went thru; I know (second hand) how painful that is because my mom got a series of infections in the hospital and had Peritonitis that she battled for three weeks. The pain was excruciating and even when she was put on morphine it was still painful, so I know it has to hurt. She was on PD for about seven years and never had an infection until then. They eventually removed her catheter and went to hemo just like you, but she would have gone back to PD if she got better and they allowed it.
I agree with Red from Canada....you should try PD again if possible. Obviously you don't want to go thru the pain and risk of Peritonitis or any infection again, but with a little luck and being extra careful, you should be fine. Like I said, my mom never had any type of infection in all the time she was doing PD from home.
I am glad you are doing better and good luck whether you stay on hemo or go back to PD.
-
Ken you out there?
Hoping all is getting easier for you to deal with.
Your new center sounds nice-i hope you are doing well
P&K
-
ken, hoping you are doing better.
-
I've not logged on to IHD for a couple of weeks and I've now noticed all the new replies to this thread. Thank you everyone for your concern it really does mean a lot to me.
In answer to Red of Canada I just can't contemplate APD again after the horrors of peritonitis. having now experienced haemo I know only too well the freedom that APD gave me but I can't bear the thought of having to go thruough such indescribable pain again. I am on the waiting list for a fistula and home Haemo training.
Del I've made further inquiries and yes we can do nocturnal. I'm not so sure whether or not I could sleep through it. Do you have to lie in the same position all night because of the needles in your arm or is it safe to change sleeping positions?
-
Hi Ken,
I am happy to hear from you! I hope you get settled in to something that works. So sorry for the pain you endured! :cuddle; :cuddle; :cuddle;