Fistula pressure

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Fistula pressure

Postby Duker5 » Fri Jun 20, 2014 4:52 pm

My brother has been going through the procedure to be a possible live donor for me, he's a perfect tissue match but not a blood match, anyway apparently something has happened throughout the testing and now they're talking about him doing something called paired donation. I'm not sure what went wrong as I've had nothing to do with his testing or been told of any of the results, I can only assume they've somehow found out my antibodies are too high or something so they can't use him? Although they didn't take any blood from me to test this as far as I know?

Anyway now my renal unit keep asking me if I am having a fistula, but I really don't want one and won't be pressured into having one, I've had a tunneled catheter now for the last 10 months and had no problems with it until recently when they had to use some medication to dissolve small blood clots in the line (now rectified by all accounts) a fistula really isn't for me as I don't do needles and I really don't like the sight of all the blood!! Plus I don't mean to sound horrible but some of them are really ugly looking, some peoples are huge and go all the way up there forearm.

I don't think they can force me to have one but I need to know where I stand as in my mind I won't have one and they won't be able to change my mind, but I don't want to seem as if I'm 'fighting' about it as I simply just don't want one. It's down to personal preference.
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Re: Fistula pressure

Postby wagolynn » Sat Jun 21, 2014 12:12 pm

The tunnelled catheter has a limited flow rate compared to a fistula. The higher the flow rate the 'better' the dialysis.
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Re: Fistula pressure

Postby Grey » Sat Jun 21, 2014 4:21 pm

Might be a stupid question but what about APD dialysis
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
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Re: Fistula pressure

Postby Duker5 » Sun Jun 22, 2014 8:28 am

wagolynn wrote:The tunnelled catheter has a limited flow rate compared to a fistula. The higher the flow rate the 'better' the dialysis.


Oh I know that but that's not the point, the point is if I don't want a fistula then surely I can't be forced into having one. Not that I'd let them force me anyway.

Grey wrote:Might be a stupid question but what about APD dialysis


I considered that to start with but it's too much hassle for me, i'd much rather go to the hospital for 3 days and have 4 days free to do whatever I want than have dialysis every night and have to store a lot of things, I know it suits a lot of people but it's not for me I'm afraid.
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Re: Fistula pressure

Postby wagolynn » Sun Jun 22, 2014 2:02 pm

Hi Duker5,
No they cannot force you but they will try to encourage you to have the fistula because it is better for your long term health. The other option, to improve dialysis (when required), is to extend the treatment time. Most units are organised around 4 to 5hrs maximum per session, because most patients start to complain at about four hours.

Many patients are worried, in the beginning, about the sight of blood and needles but they usually quickly get used to it.
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Re: Fistula pressure

Postby Adam » Sun Jun 22, 2014 2:04 pm

I agree with wagolynn.
July 2008 - transplant - living related donor
April 2005 - dialysis - tunnelled neckline, then CAPD (15 months), then HD (left wrist AV fistula)
January 2004 - diagnosis - IgA Nephropathy
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Re: Fistula pressure

Postby lizbee » Sun Jun 22, 2014 4:13 pm

I had a fistula done way back in Feburary, had to wait 12 weeks for it to mature then it was discovered to be too small and now it is useless and not working at all, I then had a neckline put in as I had to have dialysis by this point as they were waiting for the fistula, but sadly that did.nt work out for me, and had to come out after just 5 days because of infection I now have a tunnelled graft in my arm and it is very big going from the crook of my arm right up to my arm pit but I have just completed by 3rd full week of dialysis and already I can see small changes......my advise is have the fistula done as soon as you can if you change your mind if not maybe the neckline would work better for you or the graft..........................

Liz
I am 61 years old


diagnosed 17 years ago with Membratts disease

Now receiving dialysis

I am Scottish and live in Glasgow.
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Re: Fistula pressure

Postby pns2007 » Sun Jun 22, 2014 9:18 pm

I had my first fistula in Feb last year and it failed. I had my second in September last year and queried if I needed it so soon. Glad I did as I started dialysis on Easter Monday at short notice. The pre-prepared fistula was mature and worked really well. The nurses on the ward said it was well formed and the best they'd seen for a new patient. Mine is straight and quite thick, I started needling myself 2 weeks after first starting dialysis and now have button holes. Very little pain and I've taken charge of my treatment with the support of the nurses. Going to home heamo in middle of August, 4 months after first session. My advice is to take control, yes it hurts to start with but in the scale of things not that much, yes there is blood, but there is with a neck line. With a fistula, after dialysis you hold on a piece of gauze for 5 minutes or so till the bleeding stops, apply a plaster and your FREE till the next time
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Re: Fistula pressure

Postby chrisb » Mon Jun 23, 2014 9:20 am

i am glad to see some positive posts on HD for a change.

on the issue of blood, I am very much a wus and thought I would faint at the sight of my blood coming out but the truth is that because I cannot feel anything its just like red paint flowing about and I don't associate it with being my blood although I know it is.

a lot of posters moan at having to attend the clinic/hospital x 3 per week but it is no different to going to a gym, a club, group meeting, work etc for a few hours when you ae done you feel great and for the rest of the week you can forget you have kidney problems and need dialysis also your home is devoid of anything to do with dialysis.

I am soooo glad I decided on hD :D
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Re: Fistula pressure

Postby Tibbs » Mon Jun 23, 2014 10:39 am

Hammersmith seem to be alone in that they're happy to dialyse regular patients through Tesio (chest) lines.

I spoke to doctor about it and they said that they preferred to use them if the patient was likely to get a transplant at some point, as the line could be taken out and the patient didn't have to deal with a now unnecessary fistula.

If I were in your position (and this is personal opinion and not a recommendation etc etc etc), I'd want a chest line rather then a fistula if I had a potential transplant in the works.

I'm not sure about the flat statement that a fistula is 'better'. It's one option. Having seen the results of fistulae failing and the odd veins that can happen, it's not as simple a decision as it could be.
26/11/12 - Live donor transplant from my dad
6/1/13 - Discharged - Rejection episode over
7/1/13 - Getting on with life
24/9/13 - Left Radical Nephrectomy of Native Kidney due to cancerous tumour
14/10/13 - Back to work, getting on with life
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Re: Fistula pressure

Postby Duker5 » Tue Jun 24, 2014 1:59 am

wagolynn wrote:Hi Duker5,
No they cannot force you but they will try to encourage you to have the fistula because it is better for your long term health. The other option, to improve dialysis (when required), is to extend the treatment time. Most units are organised around 4 to 5hrs maximum per session, because most patients start to complain at about four hours.

Many patients are worried, in the beginning, about the sight of blood and needles but they usually quickly get used to it.


I do 4 hours at a time, they don't do anymore in my unit from what I can gather, I don't think I could tolerate anymore than 4 hours anyway.

lizbee wrote:my advise is have the fistula done as soon as you can if you change your mind if not maybe the neckline would work better for you or the graft..........................

Liz


Thanks for your advice but no way will I be getting a fistula done, I notice you mentioned a neckline, I believe that is actually what I've got, this is from a post I made back in August 2013, can anyone verify if this is a neckline? I believe it is.

Image

pns2007 wrote:I started needling myself 2 weeks after first starting dialysis and now have button holes. Very little pain and I've taken charge of my treatment with the support of the nurses. Going to home heamo in middle of August, 4 months after first session. My advice is to take control, yes it hurts to start with but in the scale of things not that much, yes there is blood, but there is with a neck line. With a fistula, after dialysis you hold on a piece of gauze for 5 minutes or so till the bleeding stops, apply a plaster and your FREE till the next time


You say there is blood and there is also with a neckline, but in my experience people with a fistula can bleed a lot (I witnessed as such the other day when 1 patient bled all over the floor, not something I want) where as with my neckline, you come off get caps put on the end and off you go, no bleeding, at least never in my experience over the last 10 months with it in.

Also I know you say you hold onto a piece of gauze for 5 minutes but in my experience most patients take at least 20 minutes to stop bleeding and 1 patient ended up getting admitted and apparently bled for 7 hours! Not stopping until 3am in the morning..

chrisb wrote:A lot of posters moan at having to attend the clinic/hospital x 3 per week but it is no different to going to a gym, a club, group meeting, work etc for a few hours when you ae done you feel great and for the rest of the week you can forget you have kidney problems and need dialysis also your home is devoid of anything to do with dialysis.

I am soooo glad I decided on hD :D


Honestly they do have the right to moan, and with respect I cannot agree that it's no different to going to a gym or a club etc, it's massively different, going to a gym you have the CHOICE to go to the gym, you DO NOT have a choice whether or not you go to dialysis, also going to a gym you go to get fit, going to dialysis you go to make sure you don't die, again a massive difference, I say all that with respect as the difference is night and day!

Tibbs wrote:If I were in your position (and this is personal opinion and not a recommendation etc etc etc), I'd want a chest line rather then a fistula if I had a potential transplant in the works.

I'm not sure about the flat statement that a fistula is 'better'. It's one option. Having seen the results of fistulae failing and the odd veins that can happen, it's not as simple a decision as it could be.


I'm glad to read that in your personal opinion you would want a chest line rather than a fistula if you had a potential transplant in the works (I do, my brother, but apparently they're now looking down the paired donation route) either way I don't want a fistula and will not have one no matter what.

I simply don't do needles OR blood, and there is no way I could put up with the pulsing of a fistula all the time, respect to those that do have them and cope with them but I simply couldn't.
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Re: Fistula pressure

Postby rheaybou » Tue Jun 24, 2014 8:58 am

I personally refused a fistula on a number of occasions. It is personal opinion if a fistula is better, in the long run the chance of infection is documented to be lower than with a neck line as picture(Tessio line and other names are used)

I struggled with PD at home and then a neck line, however living with a neck line is a nightmare in my opinion. Itchy dressings, limited showers and risk of infection. If I were not lucky enough to have a transplant then the long term view would have been towards a fistula. A fistula may in certain cases look ugly, but if it saves my life then I wouldn't care!

Nobody is a fan of needles, even now with the fine needles I dont enjoy them but they dont hurt and I know they are a part of my life. I also dont like hard work.....but I do it anyway!
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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Re: Fistula pressure

Postby martinmufc » Thu Apr 12, 2018 5:08 pm

Hi i had a fistula put in my wrist in nov 86 which i constantly had problems with,the same as when i had canula.
Eventually after numerous poor dialysis i had a new fistula in the inside/crook of my elbow in March 87 which is still going strong today.
Back then i was confined to bed for 5 days and my arm wrapped in foul, i also was told to exercise with a rubber ball as much as possible, from then on everything was fine, no infections and a better dialysis, personally i always found a fistula better.
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Re: Fistula pressure

Postby wagolynn » Fri Apr 13, 2018 3:42 pm

There is no escaping from the fact a neckline can can only achieve half the flow rate of a fistula, and this will be inadequate if the kidneys have stopped working.

The way to go with a fistula is to get onto buttonholing as soon as possible, some units say they cannot do button holes, mine did.
If this the case you need to keep asking until they give in, the objection is - ideally to establish a button hole the same person should do the first three or four needlings (if there is such a word), however, it can be done with different people doing the needling they just have to be aware a button hole is being formed.
Or the patient needles themselves.

With an established button hole there should be no pain at all when needling.

As to clotting time, some patients may be on warferin which will cause long clotting times, also long clotting times suggest over use of blood thinners.

With a neckline the last thing you want are blood clots, in stopping the line off the line is filled with anti clotting agent to prevent clots.
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Re: Fistula pressure

Postby rheaybou » Wed Apr 18, 2018 9:00 am

wagolynn wrote:There is no escaping from the fact a neckline can can only achieve half the flow rate of a fistula, and this will be inadequate if the kidneys have stopped working..


Was never told that about my Tesio line. Maybe that is why my numbers took so long to get to an acceptable level for the LD transplant - low HB was also an issue. But maybe for the time it takes for a fistula to mature and be usable the line was the best option as PD results got slowly worse. Still, I hope my next dialysis access is a long way off.
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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