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Author Topic: quick question for u guys  (Read 3728 times)
statesidela
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« on: September 22, 2011, 07:01:41 AM »

i have a fistula in my right arm pretty much right on top of my bicept...the people i have seen with a fistula theres look huge like a hose pipe under there arm...mine does not look like that at all in fact you can barly tell i have a fistula..i still feel the thrill in my arm...and i am curious did the surgon do a poor job with mine or is there other factors involved that is stopping mine grow as large as others?

also is it possable to have a fistula reversed i.e put back to the way it was before surgery...not that i would do this cause that is my life line for when i need it again...just curious???

thank fir any info you can give me guys

bren
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Rerun
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« Reply #1 on: September 22, 2011, 07:22:27 AM »

Hi Bren, When they showed me someones fistula the first time, I burst into tears.  My god was my arm going to look like Frankenstein's?

Well, a lot of vanity has now left me.  I went through so many fistulagrams and surgeries just to get the little one to work that I am thrilled to have a HOSE under my skin that works.  I don't care one bit that it is ugly and has lumps (aneurysms) because it works.  The techs have no problem sticking it.  No more digging around.  No more infiltrations. No more clotting off.  No more having to go home whiteout dialysis and having to report to surgery the next day.

Pray for a big ugly fistula.  I'm telling you, the big ones work and you will have a better life on dialysis. 

Usually when you get a transplant they quit and I'm not sure if they can reverse them. 

You need to start making up "come backs" for people not on dialysis who say..... "what happened to your arm"?

Things like "I was attacked by a mountain lion"  or something.    :rofl;

Your fistula is your life line.  Take care of it, and love it like only a Mother could love an ugly child.

Just my   :twocents;

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statesidela
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« Reply #2 on: September 22, 2011, 07:30:59 AM »

hi rerun i am not worried about looks or vanity or nothing i was just wonder why mine has never. developed into the hose pipe...i have had the fistula for almost a year now...i am thinking that its not a good fistula...and when i return to dialysis there gonna tell me to get more surgery....i really want to avoid getting another chest catheter
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boswife
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« Reply #3 on: September 22, 2011, 08:29:01 AM »

Hi Bren  :) , hubby (bo) has had his fistula for 2 years and his is still looking ..well, not very noticeable at all  but yet it is beautiful functioning. . (we are on nxStage and we run the maching slow so that does help as well as me being the only 'sticker'  ;) )  I have seen both types huge, and like his that have done thier jobs beautifuly.  I think you can get a 'fistula gram' to check out its usefulness though to settle your thoughts?   
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Desert Dancer
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« Reply #4 on: September 22, 2011, 08:29:46 AM »

My fistula is in my left wrist and unless I point it out, people don't know it's there.

I've been using it for almost a year now and I've never had a single problem with it (knock wood). I don't think it has to look bad to work well.
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

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« Reply #5 on: September 22, 2011, 10:08:41 AM »

My Blokey has been using his fistula (it's on his lower arm) for nearly a year now and at a glance even I can't tell it's there ... it's not *that* noticeable, but it does work splendidly well. 

 ;D
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- wife of kidney recepient (10/2011) -
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tyefly
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« Reply #6 on: September 22, 2011, 10:15:29 AM »

I had mine for two years and using the same two buttonholes...   the only thing that shows are the buttonholes....   looks like some dog bit me..... like a vanpire bite.... 

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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

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willowtreewren
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« Reply #7 on: September 22, 2011, 05:38:31 PM »

It's interesting how different all the fistulas are. Carl's is a whopping rope that sits above the contour of his lower arm and runs from his wrist to his elbow. It is still humming along even though he is no longer using it. I just hope it will still be there if he ever needs it again.

Aleta
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sullidog
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« Reply #8 on: September 22, 2011, 07:35:39 PM »

I don't have a fistula, but have a graft, no one comments and I don't care if they did.
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May 13, 2009, went to urgent care with shortness of breath
May 19, 2009, went to doctor for severe nausea
May 20, 2009, admited to hospital for kidney failure
May 20, 2009, started dialysis with a groin cath
May 25, 2009, permacath was placed
august 24, 2009, was suppose to have access placement but instead was admited to hospital for low potassium
august 25, 2009, access placement
January 16, 2010 thrombectomy was done on access
statesidela
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« Reply #9 on: September 22, 2011, 08:29:42 PM »

ah thanks guys i feel better knowing that i should not need more surgery i was concerned about about this....and also the fact that i may need another dreaded chest catheter....that was one of the worst things to do with dialysis for me i hated that thing with a passion especially the constant tape on my skin was sooo itchy

another related question for you guys if you don't mind

Is there anything i should be doing to ensure that my fistula keeps working for as long as possible while it is not in use?

the surgeon told me not to let them stick me in the same place twice.....but you guys do buttonhole which does sound better to me.....just not sure i could ever stick myself....i need to grow a pair any thoughts on this???

thanks again guys

bren
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kamar55
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« Reply #10 on: September 23, 2011, 04:22:49 PM »

the surgeon told me not to let them stick me in the same place twice.....but you guys do buttonhole which does sound better to me.....just not sure i could ever stick myself....i need to grow a pair any thoughts on this???
bren

I had a fistulagram last Sept. and the dr. suggested buttonholing. They tried for several months, but with no success. I recently saw my surgeon who put in my fistula and he was livid about buttonholing. NO! NO! NO! He said it wears out your fistula by sticking the needles in the same place each time. But, I see/hear other patients doing it with great success. Have you asked your nephrologist?
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willowtreewren
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« Reply #11 on: September 23, 2011, 04:30:58 PM »

Carl's vascular surgeon was also against buttonholes.

It is hard to know what to do!

Here are some things that we were told to help maintain the fistula:

Try to avoid sleeping on that arm.
Do not carry heavy bags with the strap over that shoulder.
Do not allow the fistula to get sunburned.
Do not wear constricting clothing over the fistula.

Good luck. Carl had his fistula for about a year and a half before he had to use it.  :2thumbsup;

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
lmunchkin
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"There Is No Place Like Home!"

« Reply #12 on: September 23, 2011, 05:09:27 PM »

You want to make sure you can feel the "frill".  If not, then you may have underlying issues.  My husbands fistula is like Carls, a beautiful rope from wrist to elbow.  And I do not do buttonholes, I prefer the "ladder" method, but either is fine Im sure!

lmunchkin

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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
jazzin11
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Keep on going...It can't get any worse, can it?

« Reply #13 on: September 23, 2011, 09:23:30 PM »

I had mine for two years and using the same two buttonholes...   the only thing that shows are the buttonholes....   looks like some dog bit me..... like a vanpire bite....

Mine sounds like yours Tyefly, I sometimes reply "You should have seen the size of that snake!"  After the shock wears off I tell them the truth. We have to have some fun, right?

John (jazzin11)
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Lost the left kidney to a large kidney stone 1995
Cardiac Catheterization 12/11/2007 The contrast dye took out the right kidney!
Cardiac Quadruple Bypass 12/14/2007
AV Fistula done 4/2008
Diagnosed ESRD 9/11/2008 Started in center Hemo the same day.
Buttonhole access not without problems!
Living Donor transplant at UWMC Seattle June 29, 2011
tbarrett2533
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« Reply #14 on: September 24, 2011, 12:14:51 PM »

I  look like an IV drug addict where as someone else may not even have a bug bite mark..... it depends on the person, however I must agree with the above posts........treat your fistula as if it is you lifeline, because in all reality, it is!!!!   

my best come back for when people scream out in horror over the sight of my arm is that, "hey that is what keeps me alive, you don't like it, don't look." then they feel bad and ask me one million questions about dialysis and apologize that I am on dialysis because I am so young!!!! 
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CKD since: 1981
9.22.10: Catheter surgery
9.23.10: Started in center Hemo
10.06.10: Fistula surgery
12.02.10: Started using right upper arm Fistula (15 gauge)
12.30.10: Catheter Removed
07.01.11: Laparoscopic CAPD Catheter insertion
07.29.11: Started CAPD, 2000ml, 4 exchanges (Baxter)
08.15.11: Started filling with 1500ml (instead of 2000ml), 4 exchanges
08.21.11: Back to 2000ml fills, 4 exchanges (3-2.5% & 1-1.5%)
10.12.11: 2000ml fills, 4 exchanges (3 1.5% & 1-2.5% overnight)
11.08.11: Transplant list

Dialysis works for me, I don't work for dialysis!
It's my body, my health!!
Rerun
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Going through life tied to a chair!

« Reply #15 on: September 24, 2011, 02:57:41 PM »

Sorry for going on and on about how you have to learn to like your fistula.  I guess it was more my problem than yours.

Has anyone told you to get a soft ball and squeeze it.  It is supposed to make your fistula mature.  Ask your vascular surgeon about that.

            :waving;
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