chrisb's journey

[chrisb]

Hi all

my journey through CKD has reached a rather rocky road at the moment.

To recap, i had a PD tube fitted 5 months ago but it was soon discovered that due to my huge polysyctic kidneys which have to be removed and other things, PD would not be successful. i then had the op for a fistula 10 weeks ago which is not maturing as they would like. apparently there is a blockage which they are going to open up with a balloon.

last week i was rushed into hospital with suspected peritonitus which turned out to be a bowel blockage (my big bully kidneys are fighting with all my other organs for space). the renal doctor was all for rushing me straight into surgery to remove kidneys but we came to an agreement that although i know the kidneys have to come out the time isnot NOW I am hopefully only weeks away from a workable fistula and as my blood results show nothing dangerous even though my function is now at 6% i would prefer to hold out rather than have to go the "Herman Munster" route with a neck line.

back home now i am sure i have left my brain behind at the hospital - my head is quite "muzzy" and i cant concentrate.

my employers, who seem to believe that i have got nothing more wrong with me than a bad cold were expecting me straight back at my desk to tackle all the work they have left to pile up in my absence. my GP wanted to sign me off for 6 weeks but that would be the end of my job so we compromised on 2 weeks sick leave to be reviewed.

now to top of all that i have got an infection at my PD tube exit site. on my third course of antibiotics in a week which i have never liked taking but nowadays there is no alternative.

i keep my self positive my looking beyond this current rocky patch, reading other posts and knowing that things will qieten down when i am settled on dialysis and my kidneys have been removed. strange things to look forward to but there you are

chrisb

[dirverd]

Your route dialysis sounds very similar to mine.

I went on APD, while I was waiting for my brother to have his tests.

My tube got infected and had a neckline fitted (although it's I don't know why they call it this its more like a chest line)

This was my lowest point, I couldn't see how things could get any worse. Hold in there though, once you're set up on heamo, while not great, you'll have a bit more stability.

Good luck.

[Grey]

Hi ChrisB, really not a happy journey yourself is it, I know just how you are feeling having rather a bad time myself. I also know how bad the effects of blocked bowels and how I am fighting to keep even vaguely regular. I have pills and solutions lurking round every corner just to keep a 3 or 4 day movement going. Crazy all this stuff. I remember you saying you could not face the machine at night and now after being trained and done it once understand how daunting it can be. I am hoping that from now on in each time it will get easier and I will start to feel the effects of the treatment. I do hope whatever you do sorts itself out and you start to improve sooner than later. Man it is frustrating when people look at us, me you or anyone with renal failure and just because we have not grown grose lumps on our foreheads or extra unsightly bits that are clearly visible, they say, my but you are looking well. If only they could understand that the truth of the matter is people with renal failure are actually dying, dialysis and transplant are current interventions that help keep us alive. It's that serious. People can be callous in their ignorance I'm afraid. Chin up and keep in touch. G

[jbell]

I agree so much about peoples opinions of kidney disease. I am having trouble getting through to of all people my husbands family. Recently my mother in law told me I went out with my friends for coffee too much, if I didnt gallavant so much I would feel less tired and much better. I tried to explain that I go out despite how I feel just to keep going and try to carry on. I feel very alone I have no family apart from husband and daughter { who refuses to aknowledge I am ill) . Its really difficult when my friends and family really dont want to know about ckd, it seems to make a lot of people uncomfortable.
Sorry rant over, hope you are feeling better chrisb I will be in touch soon. jan

[cph1234]

Jan, I just wanted to offer my support to you. You are doing well despite your circumtances.

[chrisb]

had a scare last night and thought i would be rushed back into hospital to have the kidneys whipped out. unfortunately just as i was settling into the laxative routine the antibiotics i was given for the PD tube infection have bunged me up again.

thankfully they have suggested i stick to fluids and up the laxatives and they will reassess when i go to the hospital on friday for a PD flush.

yes Jan i get very down at other peoples response to me and my illness. i find that people find my symptoms like gout and cramp to be highly amusing and they frequently sigh and say - whats the matter with you NOW!

my family dont want to know me and my CKD and have in fact told me that i am an embarrassment to them. well if thats the case i am better off without them.

[jbell]

Hi chris

you poor thing you must have had a scare last night. You seem to be having a nightmare of a time at the moment. I hope you are feeling better today and things go ok at the hospital on friday.

That is so hard having your family react the way they are. My husbands family seem to want to just ignore me almost like the problem will go away if they dont see me or speak to me. People are ignorant and I think because there are so many symptoms they get fed up of hearing it. At least we have this forum and people who really understand to talk to,take care jan

[wagolynn]

I think other people just do not know what to say, I am sure if we are all honest, we have avoided contact with a recently bereaved person, not that we did not care but because we just do not know what to say or do to help.

I think the best thing is, not to worry about other folk’s reaction, if they ask, I tell them, if not I expect nothing. Having written that, it looks cold but we have been made aware of our mortality I think that is sufficient to be going on with...

[chrisb]

Hi all

Back home from my second stint in hospital in a month.

same problem as before - severe stomach pains and constipation previously diagnosed as being caused by my huge kidneys. this time i was admitted via a&e so of course they assessed me with an open mind and not with kidney shaped glasses and following CT scan it was found that my PD tube had caused a hernia and that a part of my bowel was getting trapped in it.

they decided (last friday) that they would repair the hernia and remove the redundant PD tube at the same time closely monitoring my kidney function (6%) in case they need to immdiately start dialysis.

i then sat there for 4 days being fed but not seeing a doctor. i finally saw the surgeon on wednesday morning who said that they had decided that because kidney removal was due to be done shortly they were not going to repair the hernia or remove the PD tube until then

i was sent back home. because nothing was done i can see myself back there again in a couple of weeks.

on the plus side i was well fed with proper meals which is something i am now unable to do for myself and i had proper sleep instead of my usual catnapping because i could relax in the knowledge that there were people around should i need help which is something i do not have at home.

[jbell]

Hi Chris it seems things dont get any better for you, I am sorry. I havent been in touch because we seem to be keeping up to date with this site. When are you due for the kidney removal operation ?, what happens after that do you know ?. I hope things improve and you dont land up with another trip to hospital too soon. If you are having difficulty cooking have you thought about a service where you order farm cooked frozen meals that are delivered to your door (they evan put them in your freezer for you ) and you microwave them. Its a great thing , the foods a bit like school/hospital dinners but better then the ready made meals from supermarkets. I have had to use them after major surgery when I have been alone. Its just a suggestion but it might help. Take care jan

[chrisb]

Hi Jan

yes i have thought of wiltshire farm foods i have even got a catelogue. unfortunately my freezer is totally frozen up and i have no one to help me defrost it. it needs replacing anyway but i dont want to do that i (hopefully) move.

[chrisb]

happy birthday me.

had a fistulagram (balloon inserted into the fistula to widen it) postponed by the hosp until today and because the original fistula op was not at all bad i did not bother to change it.

how wrong i was it was much more painful than the original op but at least it is done now and i am really hoping they will not have to repeat it.

[cazpi]

happy birthday me.

had a fistulagram (balloon inserted into the fistula to widen it) postponed by the hosp until today and because the original fistula op was not at all bad i did not bother to change it.

how wrong i was it was much more painful than the original op but at least it is done now and i am really hoping they will not have to repeat it.

Ouch, that sounds nasty, a fistulagram is nothing like a strippergram then!

[chrisb]

no they had me fooled

[chrisb]

I have now got a date for my kidney removal - 4th march. one doctor says they will fix my hernia and remove my pd tube at the same time while another said that they wont! one doctor said that i would be kept in hospital longer than usual and until i am able to look after myself as i have no one to help me. another doc said i would be sent home and i should get a cammode and a bed put downstairs!

clear as mud really