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Getting a fistula!!

PostPosted: Wed Jul 10, 2013 10:12 pm
by IanJes
Evening all, new to the forum world not so new to CKD, got a date for my fistula being done (Fri 19th July). After 12 months expecting to do PD, now after an infection & over large kidneys (Polycystic) now told I have to have a fistula & double nephrectomy was a shock to say the least. Moaning over the reason I got on here, I would like some practical advice on looking after my fistula when I get home.
Many thanks.
Ianjes.

Re: Getting a fistula!!

PostPosted: Thu Jul 11, 2013 8:09 am
by xtiand
Welcome to the forum. I had a fistula made a couple of years ago, the process although slightly uncomfortable was much easier than I expected. When you are discharged the fistula will be covered with a dressing and possibly bubblewrap - this is to keep it warm so may not be needed at the moment! For the first couple of weeks be very careful not to bump your fistula arm and do not lift anything heavy with it eg the kettle. You may be given some exercises and a small foam ball to squeeze - the more you do the exercises the stronger your fistula will be. Don't wear any tight clothing on that arm - make sure t-shirt sleeves are loose at the top of the arm as well as long sleeves. Don't allow anyone to take blood or use a blood pressure cuff on that arm. The surgeon who did mine impressed upon me that that arm is now for dialysis only, no watches, bracelets etc though you may wear a hospital/dialysis unit issue band (the rubbery bracelet type) stating that it is your dialysis arm but check that the fit is generous. Check the "thrill" every day and tell the hospital or local dialysis unit if it is difficult to feel or changes. Likewise tell them if you injure it. Sometimes the fistula can block off with a clot but if it is caught soon it can be repaired either with clot busting drugs or surgery. You should get a leaflet about caring for your fistula from your hospital but if not there are plenty to be found on the internet -type in "AV Fistula care" as there are other unrelated types of fistula.
I'm waiting to find out if I need a nephrectomy too, I had an ultrasound scan recently and was told the kidneys are "huge" (I have PKD too).

Re: Getting a fistula!!

PostPosted: Thu Jul 11, 2013 3:41 pm
by wagolynn
Just to add to the above, the ‘thrill’ is a buzzing feeling at or very near to the (new, made by the surgeon) junction between the artery and the vein. The operation is usually done with a local anaesthetic, can take up to 3 hrs but more usually 2 hrs, just boring laying there.

Re: Getting a fistula!!

PostPosted: Thu Jul 11, 2013 4:30 pm
by chrisb
Hi

after 3 years of planning to do pd i have just had my tube fitted and had started training on the machine when i saw the surgeon about the planned removal of one or both of my huge pkd kidneys to enable me to go on the transplant list.

i am sure you can imagine my shock when the surgeon told me in no uncertain terms that i would not be able to do pd after the op which he was planning to do in a month/6 weeks time.

on discussing this with my neph he said i could do pd until the op and then change to hd. looks simple on paper but this is my life we are talking about

so after being assured all this time that i would by doing overnight pd all my plans for the future including being able to do dialysis without disruption to my employment were thrown out of the window.

the removal of the kidney to enable a transplant has always been known so i cant understand why they gave me a false impression of the future and let me go through the op to insert the tube with all its consequential pain, discomfort, loss of work and not least cost to the nhs only for it to have to be removed again and a fistula fitted.

i am not prepared to get myself geared up to doing a few weeks of pd only to have to change over to hd. if i have to do hd i am going to start with that and no messing about.

because my function is now so low (6%) he is not sure that the fistula will be ready to use before my kidneys give out altogether!

Re: Getting a fistula!!

PostPosted: Thu Jul 11, 2013 5:02 pm
by Tibbs
chrisb wrote:Hi

after 3 years of planning to do pd i have just had my tube fitted and had started training on the machine when i saw the surgeon about the planned removal of one or both of my huge pkd kidneys to enable me to go on the transplant list.

i am sure you can imagine my shock when the surgeon told me in no uncertain terms that i would not be able to do pd after the op which he was planning to do in a month/6 weeks time.

on discussing this with my neph he said i could do pd until the op and then change to hd. looks simple on paper but this is my life we are talking about

so after being assured all this time that i would by doing overnight pd all my plans for the future including being able to do dialysis without disruption to my employment were thrown out of the window.

the removal of the kidney to enable a transplant has always been known so i cant understand why they gave me a false impression of the future and let me go through the op to insert the tube with all its consequential pain, discomfort, loss of work and not least cost to the nhs only for it to have to be removed again and a fistula fitted.

i am not prepared to get myself geared up to doing a few weeks of pd only to have to change over to hd. if i have to do hd i am going to start with that and no messing about.

because my function is now so low (6%) he is not sure that the fistula will be ready to use before my kidneys give out altogether!


If you're looking to get a transplant, is dialysing through a Tesio (chest) line a possiblility? It makes the dialysis slower, and upkeep can be a pain, but it's not permanent in case you do find a donor (deceased or living).

Re: Getting a fistula!!

PostPosted: Thu Jul 11, 2013 9:07 pm
by jan4alan
It's worth feeling someone's existing thrill so you know what to feel for. Good luck!

Re: Getting a fistula!!

PostPosted: Thu Jul 11, 2013 9:19 pm
by bigbuzzard
chrisb wrote:the removal of the kidney to enable a transplant has always been known so i cant understand why they gave me a false impression of the future and let me go through the op to insert the tube with all its consequential pain, discomfort, loss of work and not least cost to the nhs only for it to have to be removed again and a fistula fitted....because my function is now so low (6%) he is not sure that the fistula will be ready to use before my kidneys give out altogether!


That's outrageous! What a waste of your - and everybody's - time.
My function was around 6% when I 'crash landed' as a new patient, and had to start dialysis straightaway. That was HD through a neck line (same as 'chest' above I think). That was fine. A bit weird getting used to a pair of tubes sticking up by your collarbone - but became normal pretty soon. I dialysed on that for 3-4 months before starting PD. 'They' prefer not to use a line like that for too long, because of the increased risk of infection through it, compared with a fistula. Though I never had any problems, and it wasn't hard to keep it clean. If a transplant soon is likely, then that can be a good option (I think). A fistula is normally permanent once it's there - though they can be removed/reversed (whatever the right word is!).

Re: Getting a fistula!!

PostPosted: Fri Jul 12, 2013 10:49 am
by JMan
IanJes wrote:Evening all, new to the forum world not so new to CKD, got a date for my fistula being done (Fri 19th July). After 12 months expecting to do PD, now after an infection & over large kidneys (Polycystic) now told I have to have a fistula & double nephrectomy was a shock to say the least. Moaning over the reason I got on here, I would like some practical advice on looking after my fistula when I get home.
Many thanks.
Ianjes.



I've been throwing this link: http://www.fistulafirst.org/Patients.aspx

And even some of the documents from it, at nurses to give to patients and indeed to patients themselves.. This is BASIC INFO and should be handed out by the hospital.. But anyway, have a read, keep your fistula warm, unrestricted, exercise it to aid development and you should be fine...


J

Re: Getting a fistula!!

PostPosted: Fri Jul 12, 2013 7:06 pm
by IanJes
Thanks v much ALL for the info really helpful.
Ian :D

Re: Getting a fistula!!

PostPosted: Thu Jan 05, 2017 4:33 pm
by wagolynn
Hi ework,
This forum is about kidneys, try this forum http://www.crohnsforum.com/forumdisplay.php?f=76

There are many others just Google anal fistula forum.

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