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Jess21
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« on: December 01, 2008, 09:29:37 PM »

Ok, I know many people have had fistulagrams.  I have a few questions, including: how long do they take, how painful for the average person (remember, when I had my fistula created, I didn't take the prescription pain pills, just 1 advil since I had to drive my mom after her surgery the next day.  and I wasn't in pain!), how crazy am I to go to school after it, and how crazy am I to have dialysis a few hours later?  I have my first one on Friday.  Thx!
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
thegrammalady
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« Reply #1 on: December 02, 2008, 09:58:13 AM »

i have had three. they didn't bother me too much, but i had light sedation each time. wouldn't do it any other way. i was told not to drive afterwards. i didn't need any additional pain medication. but i wouldn't have one and plan on doing anything for 24 hours at least.
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« Reply #2 on: December 02, 2008, 12:42:09 PM »

Not sure but i hope it goes smoothly for you.  :grouphug;
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boxman55
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« Reply #3 on: December 02, 2008, 02:54:57 PM »

Never had one, mine is working fine so far. Wishing luck with this procedure, please let us know how it goes...Boxman
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G-Ma
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« Reply #4 on: December 02, 2008, 03:54:27 PM »

I was TERRIFIED before my fistulagram in Sept and it was actually not bad, nothing for pain, no sedative.  I get so afraid of the unknown.   :Kit n Stik;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
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« Reply #5 on: December 02, 2008, 04:35:08 PM »

Waiting for the doc seems to take longer than the fistulagram itself.  Depending on how many places the doc has had to balloon, mine have taken from 20 minutes to 2 hours.  By the time I've checked in, gotten ready in pre-op, gotten an IV started, and then gone to wait for the doc to start, it's usually been 2 or 3 hours, though.  Then they will keep you in recovery for another hour, too.  (They are fussy about letting you walk out before they are sure you won't start bleeding again!)  It's usually an all-day project, or at least a good 5 or 6 hours worth.  I've always been doped up on Versed, and I usually sleep thru the procedure, if it's a normal ballooning.  If the doc puts in a stent, then I'm in pain, but only while he's putting it in place.  It' doesn't last long.  It's not usually uncomfortable afterward.  I've been a bit sore, but other than that, I don't really notice any difference.  I actually prefer dialysis immediately afterward - it gets the drugs out of my system so I'm not groggy the rest of the day.  If they give you any kind of sedative, you probably should skip school afterwards- you won't be thinking clearly enough to remember anything you learn.  It's certainly possible to have it done without sedatives, especially if you have a high pain tolerance.  Better check with the doc and see it he'll agree to it, though.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Jess21
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« Reply #6 on: December 06, 2008, 07:37:07 PM »

Well I had my fistulagram yesterday.  I got there and the nurse listened to my fistula, and the doctor pressed on my arm and told me that it looked OK but of course he wouldn't know until he got into it.  I went into the room, they cleaned off my arm (and while holding up my arm made the comment my arm span is probably the same of a jet fighter plane  :rofl; )> So they gave me a shot to numb where they were putting in the cathether.  They put the cathether in then would hold pressure on my arm while another doctor put dye in.  My head was turned towards the screens so I could see the dye going in the x-rays (I'm actually in radiology class right now and was thinking "wow look how small my bone is" and "man is that doctor going to have arthritis from all that radiation going into his fingers!").  After the first dye I could tell there was something wrong at least.  They did another, since they were trying to get into the arteries unsuccessfully.  It turns out my fistula is pretty large, but has also made alot of accessory veins off of it (the doctor says it looks like spaghetti on the screen!), which may have to be tied off if they are causing problems, but Friday were just making it hard to distinguish what was what.  After a few more attempts with the catheter, they got into the artery, and did another dye test, and could see a clot.  The artery was filling up much slower.  So the doctor said what dose of sedation I should get.  The nurse said the doctor was giving me the good stuff, and that I was going to be sleepy.  The doctor said I may or may not get sleepy.  I remember about 10 seconds after that comment.  I woke up with the nurse holding pressure on my arm.  She told me later he gave me the dose of of light sedation for a heavy weight person.  Which I am not. LOL. Light sedation, my  :sir ken;  It turns out they took out 3 clots (one in the vein, 2 in the artery).  He left one in that's by my elbow, cause he said he didn't think it would cause any trouble, and he would've had to re-cannulate me to get it out.  Then he told me to schedule another fistulagram in a month.  So I ended up scheduling another one in a month and a half.  No wonder why I was having problems!

Edited: Fixed bold tag error - paris, Moderator
« Last Edit: December 06, 2008, 07:55:07 PM by paris » Logged

Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
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« Reply #7 on: December 06, 2008, 09:56:11 PM »

At least you made it thru in one piece!  The wondering about what's going to happen usually seems worse to me than what usually does end up happening. . .
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

G-Ma
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« Reply #8 on: December 06, 2008, 10:01:11 PM »

I'm glad they found the problem and took care of it for you.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Jess21
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« Reply #9 on: December 09, 2008, 12:22:48 PM »

and now, it may be clotted again.  They couldn't use my one buttonhole tunnel yesterday (the nurse at the access center thought they could have messed it up, but it worked Friday!), and even sharp took much moving around before it wasn't sluggish.  2 techs tried, twice they landed on a nerve.  First time in a year where I've almost cried of pain at dialysis..and I have a pretty high pain tolerance! Stupid venous line.  I'm worried the clot that was by elbow that "didn't seem like it would be a problem" has moved.  :stressed; Cause once they got the needle in a good postition, there was no alarms my whole treatment. Plus I had surgery in school today, and I had to scrub in.  It was going to hurt since my arm is sore, but the teacher told me not to scrub in my arms like everyone else.  I could've hugged her.
 :bow; Please arm, work tomorrow! I can't miss school for another fistulagram!  I have finals next week!
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
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« Reply #10 on: December 09, 2008, 01:06:35 PM »

 :cuddle;
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« Reply #11 on: December 10, 2008, 03:37:46 AM »


  Hi jess
 I have had 2..  Your usually knocked out while they are doing it.. afterwards your fine.  I drove home both times right after..  you should be fine...
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Stacy Without An E
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« Reply #12 on: December 11, 2008, 04:13:27 PM »

I just had my fourth in five years.  It's a relatively painless procedure if you let them insert the IV line and give you the wacky pain medication.

I almost look forward to them because at least I know I'll get a few hours of sleep after the deal.

Read about my latest experience:

http://stacywithoutane.blogspot.com/2008/12/stacy-bizarro-world.html
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Stacy Without An E

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Jess21
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« Reply #13 on: December 12, 2008, 08:08:37 AM »

Well I just had a "quick" fistulagram..they just shot dye into me once.  Apparently, there was narrowing they could see last week, they thought that may be the problem.  But the narrowing is gone.  What they figure is that they were trying to put the needle in my accessory vein (which on the rads looks just about as big) rather than my fistula.  They did an ultrasound to see where my fistula was and he drew it on my arm for them.  The doc also suggested that they cannulate closer to my arterial vein so the area is right before the acessory vein beings.  Where the permanent marker line is and where my buttonhole/sharp marks are have about a 1/8inch difference in location, so I guess my fistula has moved a bit.  So I get to have my main center re-create my venous buttonhole.  If they keep having problems cannulating, the doc says they can tie off the accessory vein.  Also, if my hand begins bothering me or they have problems with the arterial, apparently it will be because of ANOTHER accessory vein going into my hand, which currently bulges out and can be tied off as well.  Wohooo possibly more surgery!  :sarcasm; I swear my arm is going to look like frankenstein by the end of this.
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
Jess21
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« Reply #14 on: March 01, 2009, 01:20:01 PM »

 :waiting; I had to schedule a fistulagram on friday for tomorrow.  I clotted off the machine last friday, and this friday a huge clot (about the width of my pinky finger) came out.  Everyone was amazed when they saw it.  Right after one of the techs didn't think he felt my bruit cause it was so low.  ugh.
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
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« Reply #15 on: March 03, 2009, 05:50:02 PM »

I'm late getting to this - hope it all is working out okay!
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

Angelicfury
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« Reply #16 on: March 30, 2009, 07:45:58 PM »

I had one. They shot some dye and my fistula was in the shape of the letter "N". I still averaged 400 - 450 bloodflow depending on who did my buttonhole. Light sedation with a x-ray to take home.
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