Lost the race

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Notso
Posts: 36
Joined: Mon Aug 03, 2015 2:34 am

Lost the race

Post 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.
Birdman
Posts: 47
Joined: Sun Jun 14, 2015 1:12 pm

Re: Lost the race

Post 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.
Notso
Posts: 36
Joined: Mon Aug 03, 2015 2:34 am

Re: Lost the race

Post 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.
Thumps
Posts: 1302
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Lost the race

Post by Thumps »

That's great to hear :)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
angie100
Posts: 14
Joined: Thu Dec 22, 2016 4:08 pm

Re: Lost the race

Post 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..
Notso
Posts: 36
Joined: Mon Aug 03, 2015 2:34 am

Re: Lost the race

Post 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.
Notso
Posts: 36
Joined: Mon Aug 03, 2015 2:34 am

Re: Lost the race

Post 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...
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Lost the race

Post 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.
Notso
Posts: 36
Joined: Mon Aug 03, 2015 2:34 am

Re: Lost the race

Post by Notso »

Thanks Wagolynn. I still haven't given up on a fisula yet but it's good to know all the options.
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

Re: Lost the race

Post 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.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
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