Hi
Crap … just got some bad news… blood works gone too hell… Need to know… Your Advice … Had a end to side AV fistula surgery done Oct 30th
healed up fast … good thrill… Question? Is thier a timeline before they can start using this access ?
Jessie
Timeline? No, there is no real timeline. It depends on how yours grows and when it becomes large enough to use. DO NOT USE IT UNLESS IT IS READY. If it doesn’t get big enough and they want to try and use small needles on it first, I would run from them very fast. They blew my first one that way. Ask about having it ballooned. I am not sure what it is exactly called, but it involves putting balloons in the vein to make it bigger. Do your hand exercises and never sleep on it or restrict it. good luck with it. I have had four tries and still don’t have one that works. I am using an over a year old quinton catheter now.
Peace;
LSB
Hi Jesse,
Be patient! Do not use it too early. My hushand Ralph’s did not mature for 6 months, we had to use a cathater.
as Leafsunbear said exercise the arm. Once you can start using the fistula,
start buttonholes. If you are going to do your own you should be the one starting them so you can get the same angle and spot each time. It usually takes 8 to 10 sticks with the smallest needle and than work up to the 15 blunts.
Good luck.
Pat
I initially tried to use my fistula after 4 months, and had a really bad infiltration (blow as it is often called). I was then not able to use my fistula again for another 2 months. So it was 6 months in total for me, with limited cannulation room (spots for needles). I am just now, starting to develop my fistula in my upper arm.
My advice, don’t rush it. I had a cvc until that time.
Take care.
From Canada
Jessie, where are you from? I ask because the Dialysis Outcomes and Practice Patterns study (DOPPS), which looks at tens of thousands of folks on dialysis from a dozen different countried, has found that the greatest chance of success in a fistula is if it can be used within 2 weeks after it is created.
This is NOT what it says in the K/DOQI guidelines–but those were written for the US, where blood flow rates are routinely 450 or 500. In most other countries, dialysis is longer, slower, and more gentle (and survival is better), and blood flow rates can be 200, 250, maybe 300 tops. So, it may be that how quickly a new fistula can be used depends on how HARD it will be used.
If you are in the US, it would be best to follow the K/DOQI guidelines, which recommend that before a fistula is used for the first time, it has a:
• Flow greater than 600 ml//min (!!!)
• Diameter at least 0.6 cm
• Depth of no more than 0.6 cm under the skin
This is interesting info, Dori- had never heard the part about success as running in 2 weeks. Does that mean that these countries fully start using in 2 weeks or just test them then? And hadn’t seen DOQI measurments for use. Would still like to see articles on safe speed to run fistulas if anyone turns up one.
[QUOTE=Unregistered;11209]I initially tried to use my fistula after 4 months, and had a really bad infiltration (blow as it is often called). I was then not able to use my fistula again for another 2 months. So it was 6 months in total for me, with limited cannulation room (spots for needles). I am just now, starting to develop my fistula in my upper arm.
My advice, don’t rush it. I had a cvc until that time.
Take care.
From Canada[/QUOTE] I guess I won’t have to rush it … before the end of this week i’ll be on dialysis
[QUOTE=Dori Schatell;11218]Jessie, where are you from? I ask because the Dialysis Outcomes and Practice Patterns study (DOPPS), which looks at tens of thousands of folks on dialysis from a dozen different countried, has found that the greatest chance of success in a fistula is if it can be used within 2 weeks after it is created.
This is NOT what it says in the K/DOQI guidelines–but those were written for the US, where blood flow rates are routinely 450 or 500. In most other countries, dialysis is longer, slower, and more gentle (and survival is better), and blood flow rates can be 200, 250, maybe 300 tops. So, it may be that how quickly a new fistula can be used depends on how HARD it will be used.
If you are in the US, it would be best to follow the K/DOQI guidelines, which recommend that before a fistula is used for the first time, it has a:
• Flow greater than 600 ml//min (!!!)
• Diameter at least 0.6 cm
• Depth of no more than 0.6 cm under the skin[/QUOTE] Canada Sudbury Ontario not without reach of Toronto
[QUOTE=Dori Schatell;11218]Jessie, where are you from? I ask because the Dialysis Outcomes and Practice Patterns study (DOPPS), which looks at tens of thousands of folks on dialysis from a dozen different countried, has found that the greatest chance of success in a fistula is if it can be used within 2 weeks after it is created.
This is NOT what it says in the K/DOQI guidelines–but those were written for the US, where blood flow rates are routinely 450 or 500. In most other countries, dialysis is longer, slower, and more gentle (and survival is better), and blood flow rates can be 200, 250, maybe 300 tops. So, it may be that how quickly a new fistula can be used depends on how HARD it will be used.
If you are in the US, it would be best to follow the K/DOQI guidelines, which recommend that before a fistula is used for the first time, it has a:
• Flow greater than 600 ml//min (!!!)
• Diameter at least 0.6 cm
• Depth of no more than 0.6 cm under the skin[/QUOTE] Hi Dori Think I;ve finally figure out how to use this board… Thanks to Bill … We are from Sudbury Ont Canada and yes I am aware of the guidlines nonetheless I do thank you for the info. Jess has had the fistula since Oct 30th , he’s 18 and his arm is in good shape. He had a side to end and the thrill is excellent His heph liked what he saw before he went to San Diego so I’m sure he’s going to be using it soon. Just Friday they wanted do a operation on Monday to put a caheter in his neck , that was the first time I saw Jess loose it, needless to say that was cancelled. I just don’t get it … this kid plays high school hockey on the weekend , game on Tues practise to-night and he may be on dialysis by Friday… and he looks good and feels good… maybe luck or thier’s something really wrong in this cookie jar. We just got some more blood results to-day and things are just bouncing around …up here down here sort of thing, but the bottom line doesn’t really change… Tomorrow we’ll know better… for now my regards Richard C/O Jessie
The best of luck to you both. A lot of people (myself included) felt fit and fine before dialysis, just a little worn down which I thought was from working too hard but… the blood tests tell the true picture unfortunately.
Cheers
[QUOTE=beachy;11256]The best of luck to you both. A lot of people (myself included) felt fit and fine before dialysis, just a little worn down which I thought was from working too hard but… the blood tests tell the true picture unfortunately.
Cheers[/QUOTE] Hi beachy : First of all thanks for replying… you were the first person to reply when I started using this board a while back… since then I’ve been all over the place trying to get back to people… until Bill straightened me out… hell I was just replying to myself most of the time hopefully Ive got a handle on this ??? Just got back from seeing my son’s neph and I’m a bit ticked off ! He wants to put in a catheter ( neck) and I think he’s old school… talked to two other neph"s and they are both of the same opinion that being …that without seeing the arm they both say that he’s probably ready to use it… so now I’m not really sure of what to do !One neph say’s he can’t play hockey another say’s go ahead… Hell we’ll figure it all out… Your from down under… heard of the Geelong exsperince ?
I’ll bet you have… we want our son to start nocturnal as soon as possible and it’s not offered in this part of ontario so now I have a battle starting wih my goverment Gptta go Bye for now Richard C/O Jessie
Hi Richard,
An old heart surgeon friend told me once, when you find a good Neph, don’t let him go!! Whether you start using the fistula or a Permacath, both will be fairly unnerving for you both at first, go with the best advice you can. A new fistula can be “difficult” to cannulate. i had 6 months before I used mine and then i started learning to self cannulate on the second day of dialysis. (My arm was black and blue by the end of the week but that didn’t stop me trying!
Of course I have heard of (and met and emailed) Agar. He is my “Guru” Isaw his site and it gave me hope and a purpose and future. He is inspiring , however, Nocturnal is not easy. If you read some of my early posts you will see why. I love the results, the lack of diet and fluid restrictions and the slow pump speeds, but I cannot sleep very well and some nights i feel like climbing the wall being tethered and uncomfortable. Others, sleep like babies. I went straight into traing for Nocturnal as soon as I started dialysing and the best advice I can give you is “one day at a time”. If it doesn’t suit or you can’t do it, as others will tell you, short daily is really good too.
I am at the stage now after over a year of considering doing more shorts and less longs (even Agar suggested a mix might be the way to go at a conference I went to a fortnight ago). I am very grateful I have a choice though (:
Get stuck into that Government, mate! I am off for a swim, gotta make te most of this gorgeous day! All the best
Cheers
[QUOTE=beachy;11258]Hi Richard,
An old heart surgeon friend told me once, when you find a good Neph, don’t let him go!! Whether you start using the fistula or a Permacath, both will be fairly unnerving for you both at first, go with the best advice you can. A new fistula can be “difficult” to cannulate. i had 6 months before I used mine and then i started learning to self cannulate on the second day of dialysis. (My arm was black and blue by the end of the week but that didn’t stop me trying!
Of course I have heard of (and met and emailed) Agar. He is my “Guru” Isaw his site and it gave me hope and a purpose and future. He is inspiring , however, Nocturnal is not easy. If you read some of my early posts you will see why. I love the results, the lack of diet and fluid restrictions and the slow pump speeds, but I cannot sleep very well and some nights i feel like climbing the wall being tethered and uncomfortable. Others, sleep like babies. I went straight into traing for Nocturnal as soon as I started dialysing and the best advice I can give you is “one day at a time”. If it doesn’t suit or you can’t do it, as others will tell you, short daily is really good too.
I am at the stage now after over a year of considering doing more shorts and less longs (even Agar suggested a mix might be the way to go at a conference I went to a fortnight ago). I am very grateful I have a choice though (:
Get stuck into that Government, mate! I am off for a swim, gotta make te most of this gorgeous day! All the best
Cheers[/QUOTE]Good evening from Canada : We"ve read many of your posting along with Bill’s . Gus , Heather . Dori, Pierre the list goes on and on… so much experience… we find ourselves reading , learning and probably over analyzing.After a good head shake … "I’ll " usually get the picture. John was instumental in pointing us towards this site and has been so kind and generous with his knowledge… he was in my neck of the woods not long ago and it would have been a pleasure to have him in my boat…just catch fish and talk…hell don’t even know if he likes fishing ? Just the same we’re sure the talk would be beneficial. One day we will meet John!!
We have a great team for Jessie been working on it for some time now, his nephologist we’ve known for 14 years , our older son’s played hockey to-gether …so we’re on first name basis… John’s site really turned us on to nocturnal… that’s fact…I’ve went all over looking the for positives and negatives not only on chat lines ,boards, ect ect … you name it… but like I’ve said to Anne I have never really ran into anything that were not prepared for … are we fooling ourselves? Who came up with this
Good dialysis is like good lovemaking
The slower …the better
so on and so on
I’d figure you would know… because that’s what we intend on using throught-out Ontario and let it spread. Been sent to over what 70 newspaper thus far
Thanks for listening without the sound and Cheers to you and all !!
Hi Richard!
Gotta say it’s a pleasure to read of a father who goes all out to protect his son as you do. Actually, there have been numerous fathers, mothers and other family members on the boards who have fully supported their family member on dialysis. You sound like you are handling things beautifully and will surely get your son to the best possible care. You’ve really done your homework (research) and will figure out what direction to go in for each decision. Welcome to this board!