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Hello everyone - Back again on here - Jim

PostPosted: Mon Jun 27, 2016 11:32 pm
by meccanoman
Hello,
Not been on here for over 12 months, had a brilliant password but lost it, so could not get back on for some strange reason.
Anyway when on here last I was mid 20s eGFR,
But now down to 14 with creatinine up to 370.
Due to go in Exeter on 22nd July for hernia operation and to have an embedded tube fitted in my stomach.
Absolutely dreading what the future ? holds for me if any, renal doctor told me I can maybe survive one to seven years on dialysis, and in my case maybe 3.9 years with no hope of a transplant.
Anyone else in my situation ???
Kind regards
Jim.

Re: Hello everyone - Back again on here - Jim

PostPosted: Tue Jun 28, 2016 12:50 pm
by Dibs
Hello Jim.

I had an umbilical hernia repair and catheter fitted last November in Exeter. Spent one night in hospital recovering and a further two or three days at home resting before returning to work, luckily an office job. As I'm sure you are aware, we are all different, but I was mobile within a few days although it was uncomfortable for a few more. I returned to Exeter to have the wound cleaned etc a few times, but was then left to clean and re-dress it myself.

I did have some pain similar to 'drain pain' while the catheter settled in. I also suffered with drain pains when I started APD a couple of months later. But that eased after a month or so and now it all seems a matter of routine. Whilst it is time consuming and takes time to get used to, the dialysis has enabled me to continue with a relatively normal lifestyle.

Re: Hello everyone - Back again on here - Jim

PostPosted: Tue Jun 28, 2016 10:43 pm
by meccanoman
Hello Dibs,
Thank you for your reply post, I was beginning to think people had stopped talking on here.
I have been in denial now for so long, keep thinking it will never get to dialysis, and I am finding it very hard to get to grips with.
For six years my orthopaedic Consultant has been putting off operations on my knee and hip at Weston super Mare hospital because he said it is better to have kidneys than legs and the anaesthetic would damage my kidneys.
But now the Renal team want to give me anaesthetic to operate when I am at 14 eGFR which I am scared will make me more ill and push me down to dialysis, seems you just can not win.
But then you seem to have been in similar situation and managing to get over it, was you worried about the operation at all ??
I am 67 years old and retired, kidneys do not bother me at the moment, just feel tired, but that may be that I never go to bed before 2am and am up peeing all night.
Are you on dialysis now or still holding out ? they are talking of putting me on APD at home.
I am in Burnham on sea, Somerset, where in Somerset are you ?
Look forward to hearing from you.
Kindest regards
Jim.

Re: Hello everyone - Back again on here - Jim

PostPosted: Wed Jun 29, 2016 12:31 pm
by Dibs
My eGFR was 9 when I had the op. I'm 56, but apart from the PKD, I guess I'm in relatively good health. I wasn't unduly worried about the general. I'd been through several health tests to get on the transplant list.

Tiredness and cramps were my main problems. I started home APD in January. The tiredness improved once I was used to sleeping with the machine. I pee less now, so don't need the loo in the night unless I've had a few pints. I live near Wellington.

Re: Hello everyone - Back again on here - Jim

PostPosted: Wed Jun 29, 2016 4:11 pm
by Dixie1
Hi Dibs/Jim

Can either of you tell me where the nearest haemodialysis unit is for Exmoor? Are Barnstaple or Taunton areas the only options (assuming they have them), or is there anything else, would you know??

Good luck on the 22nd Jim. Try not to worry. I am certain that they would not be doing anything if they felt it was too risky. :)

Re: Hello everyone - Back again on here - Jim

PostPosted: Thu Jun 30, 2016 1:53 pm
by meccanoman
Hello Dixie,
Thank you for your good luck wishes, still rather new to all this, but there is a unit at Creech Castle, Taunton not far from the M5 motorway, because I go there for my iron top up.
I am hovering above dialysis at the moment and trying to get my head round it all.
Only other ones I know of are Weston super Mare and of course Exeter.
Sorry I can`t be more help but I am sure someone on here will know.
Kindest regards Jim.

Re: Hello everyone - Back again on here - Jim

PostPosted: Thu Jun 30, 2016 1:57 pm
by meccanoman
Hello Dibs,
Was you on eGFR 9, before your operation and eGFR 9 after your op ??
Just worried that the anaesthetic will knock me down from my 14 eGFR.
Regards Jim.

Re: Hello everyone - Back again on here - Jim

PostPosted: Fri Jul 01, 2016 12:09 pm
by Dibs
My eGfr was falling anyway, but I'm not aware of any decrease that was attributable to the op. It was 9 a few weeks before and 7 a few weeks after when I started dialysis.

Re: Hello everyone - Back again on here - Jim

PostPosted: Wed Jul 06, 2016 12:42 pm
by Dixie1
Thanks for the info Jim. Let us know how you get on. :)

Re: Hello everyone - Back again on here - Jim

PostPosted: Sun Jul 24, 2016 6:24 pm
by meccanoman
Hello all,
Well my operation scheduled for 22nd July was cancelled. More my idea than Consultant, could not see sense in having an operation that might do more damage to my kidney by having anaesthetic. Just before op was due my GFR went from 13 to 15 and creatinine of 340, so I asked them to leave me alone until I get down to 12 or below, maybe a mistake but hey ho as they say.
Regards Jim.

Re: Hello everyone - Back again on here - Jim

PostPosted: Wed Sep 14, 2016 1:41 pm
by Grey
Ask if they can do it under local?

Re: Hello everyone - Back again on here - Jim

PostPosted: Thu Sep 29, 2016 9:37 am
by bigbuzzard
Hi Jim

How's it going? I missed your original posts back in June.
I'm one of the moderators on this forum, and if you lost a password, we can fix that. Send me a Private Message or email if you like (click on my profile name and the options are there).
I also attend Exeter Hospital – though live the other way down in South Devon. I've been on Haemodialysis and APD at home. Now on transplant #2 which is all good so far.

bb