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Lost the race

PostPosted: Thu Mar 29, 2018 10:25 am
by Notso
I took a punt and lost. I ran out of kidney function before a possible transplant was organised. Consequently I'm the proud owner of a tunneled neckline as I did not have a fistula.

It happens very quickly when it happens that's for sure. I've now had 3 consecutive days of haemo and now will settle into 3 days a week.

I'm still peeing vast amounts so I'm not having much water taken off and have been improved by the dialysis already.

Hopefully my brother's donation is just around the corner.

God bless the renal nurses who are so knowledgeable and kind at the Royal Darwin Hospital.

Re: Lost the race

PostPosted: Sun Apr 01, 2018 12:52 pm
by Birdman
I was on PD until it went horribly wrong, resulting in an emergency neck line, then a fistula.

That was 18 months ago, and although I am on haemo at the local hospital 3 times a week, I am better now than I have been for a long, long time.

Hope this helps to reassure you.

Re: Lost the race

PostPosted: Tue Apr 03, 2018 11:20 pm
by Notso
Thanks Birdman. I too am feeling better now that I have started.

Prior to starting I had this idea that you became an invalid once that dialysis commences. In reality I was an invalid prior to starting as I was so ill. Dialysis has set me free - Happy Days.

Re: Lost the race

PostPosted: Sat Apr 07, 2018 2:54 pm
by Thumps
That's great to hear :)

Re: Lost the race

PostPosted: Sun Apr 08, 2018 6:22 pm
by angie100
Hi Notso..

Hope you are feeling better..i hope things go well with your transplant.my function is also declining and have had talks about diaylsis etc..keep your spirits up.sounds like your doing well..best wishes..

Re: Lost the race

PostPosted: Wed Apr 11, 2018 5:44 am
by Notso
Thanks Angie. It seems you won as I got to dialysis first. For me, dialysis has been great in that it has quickly moved me from almost total incapacitation to a situation where i am able to do everyday things and begin to build up my strength and stamina.
I am still waiting on the prospect of a kidney from my brother. He had some further tests this week to cover off on something unexpected but I should know soon.
If the transplant is off the cards I intend to jump across to home nocturnal dialysis (every night mostly) as I think it is a very good solution.
Hopefully things go as smoothly as possible for you in the future. Cheers and good luck.

Re: Lost the race

PostPosted: Sun Sep 16, 2018 7:24 am
by Notso
A bit of an update. I've been on haemo for almost 6 months now. My youngest brother was unable to donate but the second youngest is now looking good so we will be flying to Sydney for further tests and to meet the transplant team down there so in 3 weeks or so I'll know whether it's all a goer. He is a 2 mismatch.

In the meantime i have had 2 fistula ops that have failed so I am still using a tunneled catheter which is now failing and will be replaced next week. Because of that I don't think I'll bother with trying for another fistula for the time being - here's hoping I won't require one for many years at least...

Re: Lost the race

PostPosted: Sun Sep 16, 2018 3:16 pm
by wagolynn
There is another option to a fistula, a Graft.

Basically it is a silicone rubber tube grafted into the vein, the tube was brought out onto the surface but some are being fitted under the skin now.
Fitting the tube under the skin avoids the two possible infection sites where the tube comes out through the skin, and the second one where it goes back under the skin.

Re: Lost the race

PostPosted: Wed Sep 19, 2018 11:00 am
by Notso
Thanks Wagolynn. I still haven't given up on a fisula yet but it's good to know all the options.

Re: Lost the race

PostPosted: Mon Oct 15, 2018 10:58 am
by rheaybou
Notso wrote:I took a punt and lost. I ran out of kidney function before a possible transplant was organised. Consequently I'm the proud owner of a tunneled neckline as I did not have a fistula.

It happens very quickly when it happens that's for sure. I've now had 3 consecutive days of haemo and now will settle into 3 days a week.

I'm still peeing vast amounts so I'm not having much water taken off and have been improved by the dialysis already.

Hopefully my brother's donation is just around the corner.

God bless the renal nurses who are so knowledgeable and kind at the Royal Darwin Hospital.


I had a neckline fitted almost 6 years to the day. It was the most traumatic procedure I have had during my time as a renal patient. Maybe it was just the fact that I also had PD access and resisted a fistula.

The medical staff at my satellite renal unit kept me alive and going through some tough times, they are nothing short of amazing.