Does anyone have a fistula or graft in their leg?

[jbeany]

My graft is quitting on me - I'm barely making it 3 weeks between fistulagrams now.  I'm off to see the surgeon to work on getting a new access placed.  I really don't want one in my right arm.  I'm right handed, and I have enough problems cannulating myself one handed with my dominate hand.  If I get the next access placed in my right arm, then I doubt I'll ever be able to cannulate myself again.  That's going to make home hemo more difficult for me - I never do it alone, but I have done it with a different partner who then only needed to learn about the machine, not the needle sticks.  I want the next one placed in my leg.  Has anyone had this done? 

[pdpatty]

There are/was two patients that have accesses in their upper leg at the center I go to. The problem they both have had is  getting it to stop bleeding. Sometimes it would take hours to get the man to stop but the woman only takes 10-20 mins. They don't seem to have any problems using it. You need to talk to your doctor about this. The reason they have it in the leg is each of them has a withered arm.

[skyedogrocks]

So sorry to hear about this, Rob knows this issue all too well!  Where is your graft/fistula in your left arm?  Can they put the fistula in your upper or lower arm? 

There was a young man in Rob's center who had a leg fistula and it took them about 45 mins to stop the bleeding. 

Good luck with whatever you do!

[jbeany]

My current working (sort of!) graft is in the upper left arm.  The one in the lower left only lasted a week, and the attempt to put one in the left wrist only left me with massive nerve damage.  I refuse to let them touch the right wrist - I already know the veins there are trashed from repeated attempts at IV's.  I doubt the veins in the rest of my right arm are any bigger than the ones in the left, so that means more grafts, not a fistula, even if I didn't have the issue with not being able to cannulate myself.  I guess I was hoping the leg would mean an actual fistula, that would last longer than the year I've gotten out of the current graft.  It's an average 4 year waiting list for a transplant here in Michigan.  At a year per graft, I'm going to end up with one in my leg in the end anyhow, so why not start there and save my right arm?  Besides, I'm already limited in what physical activity I can do with the left - if they mess up the right one, how am I ever going to get anything done?

[msawyersw]

I wonder if your vascular surgeon or dialysis social worker can get you in touch with someone who has a leg access?  We need to hear more from people with these accesses.
One practical tip from one of my patients: get pants that unsnap from a sporting good store, so you don't have to cut your pants, buy specialty clothing, or wear shorts in the winter. 
Bleeding post treatment can be a problem with accesses and should always be reported to your nephrologist.  Don't accept it as something you just have to put up with.  It may take time to resolve, but keep letting your team know if this is a problem. If needed, you can be
re-evaluated by the vascular surgeon.

Best wishes,

Marcia Sawyer

[Gramapat]

My access is a graft in my upper right thigh.  I got it in July 2007 and started using it in October 2007.  So it has been in use for 4 months.  I haven't had any major problems with it yet.  Sometimes when they stick the needle in it, it looks like it is going to clot but so far they have been able to play around with it for a minute and it works.  From what I've read, leg grafts usually only last a few years.

I wear my dialysis "uniform".   Short sleeved top for blood pressure cuff.  Sweat pants over short pj bottoms.  I just pull down the sweats a little and after I'm on, I cover my legs with my blanket.  There is a man in my center who also has a leg access.  He wears his regular clothes.  He wears boxers under his pants and just pulls his pants down a little.   

[jbeany]

I've got an appointment in March with the surgeon.  The doc who does my fistulagrams suggested I look into "jumping" my current graft to another artery in my arm.  I plan to pursue that option first - and see what he's got to say about the leg access if redoing my current graft isn't an option.  The longer I can put off having surgery on a new site, the better!

[Gramapat]

Oh - I hope that works for you! Good luck at your March appointment!

[jbeany]

Well, so much for a leg graft.  The surgeon here refuses to do leg accesses for anyone who is diabetic.  He didn't sound very optimistic about being able to rework the left arm, and wanted to ultrasound both arms the day before surgery, and then probably end up doing one in the right upper arm.  I thought about that for a while, then called his office and left a message that I had decided not to have surgery on the right arm regardless of what he was able to do with the left.  The nerve damage in the left arm bothers me pretty constantly, and I'm very limited on what I can do with the arm - any amount of activity or lifting leaves me in pain.  I've got no guarantee that pain will stop just because I stop using the access.  If history repeats itself, I'll end up unable to lift anything with both arms - and how am I supposed to accomplish anything then?  So the odds are, I'm going to end up with a perma-cath.  Ahh, well, at least I wont' have any more needle sticks.  Lately, every other cannulation hits either a nerve or the darn stent in the upper site.  I'm not thrilled about having a cath, but I'm less thrilled about possibly messing up use of my good arm for the rest of my life.

[angellady07]

jbeany, i'm so sorry about your graft. I hope the permacath works well for you ? Is it possible for you to get a second opinion? Take care.

[Ohio Buckeye]

I hope it all works out good for you Jbeany.

[kitkatz]

Get it in writing that he will not work on your right arm during surgery. Sometimes almighty surgeons do NOT listen to what the patient wants!. 

[paddbear0000]

I'm sorry to hear about this!    I'm just curious tho, why won't they do a leg graft on a diabetic? i ask because I am diabetic.

[jbeany]

My doc says the complication rate is too high for leg grafts in diabetics, because of the neuropathy and poor circulation, not to mention the usual complications that any dialysis patient can have.

[okarol]

   Sorry J - I am sorry to hear this.

[jbeany]

 
G**-d*****, SOB, stupid, arrogant Doctors!   Auuuuuugh!

Doc tried to rework the left arm graft yesterday.  Tried, failed - sent me home bandaged and in pain with nothing to show for it.  I was glad we at least tried to fix it, but hey, if it's past help, it's past help.  Stopped at the dialysis unit on the way home to see my NxStage training nurse, and discuss the perma-cath.  While the graft is still technically working, it's getting worse by the day.  It takes forever to get it to stop bleeding, (Almost an hour at times) and is in such bad shape that I can pretty much expect to be in pain while I'm being stuck.  Something gets hit almost every time - a nerve, a stent, the wall where the graft has actually kinked.  One way or another, I'm in pain.  While I'm not necessarily thrilled about a cath, it looks like a better and better option every time I'm sitting in my chair, nauseous and pale from being in pain.  My nurse showed me the basics of how to work the cath on a sample one, and agreed to get the appointment scheduled with the doc who puts the caths in.

Wonderful.  Stumble home, take an nice dose of darvocet, and drag myself off to bed to sleep for about 16 hours straight - golly, dontcha just love anesthetic?  I woke up this afternoon to a message on my machine from a nurse at the dialysis unit - not my training nurse, since today is her day off.  The surgeon called and informed them he wants me to use the graft until it dies.  I can get the cath then, since they don't take much to put in and can be used right away.

WHAT?  Oh, of course, you're not the one in pain, you idiot.  Why should you care if I'm miserable?   And yes, of course, it makes soooooooo much more sense to leave it until it's an emergency, and I'll have to scramble to find a doctor who can insert it, a family member who can drop everything and take me (they don't have lives or jobs, ya know - it's all about me!!!), and a nurse who can train us how to use it all at the last possible second.  Better yet, let's have it clot off on a Saturday night, right before dialysis, and then I can go 2 or 3 days without any treatment, because that ALWAYS makes me feel so lovely and chipper. 

I left an irate message for my poor, unsuspecting training nurse to find tomorrow.  In the meantime - here's to you, doc!   

[charee]

Bugger Jbeany, thinking of you and this is for your DR

[kitkatz]

Oh yeah. Just interrupt your life because he could not fix things.     These all knowing all wise docs!  

[willieandwinnie]

jbeany, stick to your guns and tell them, give me something strong for the pain or put in a Cath. Take kitkatz  and knock some sense into him. What is with these Doctors??

[paddbear0000]

WHAT?  Oh, of course, you're not the one in pain, you idiot.  Why should you care if I'm miserable?   And yes, of course, it makes soooooooo much more sense to leave it until it's an emergency, and I'll have to scramble to find a doctor who can insert it, a family member who can drop everything and take me (they don't have lives or jobs, ya know - it's all about me!!!), and a nurse who can train us how to use it all at the last possible second.  Better yet, let's have it clot off on a Saturday night, right before dialysis, and then I can go 2 or 3 days without any treatment, because that ALWAYS makes me feel so lovely and chipper. 

I would tell that doctor of yours exactly what you just said.   

[okarol]

  Sop hurting our JBeany!!
I don't understand why you would have to use the graft until you've bled to death.
Stick to your guns and tell them what you need done!
 

[Rerun]

Jbeany any update on this?  My fistula is working too good and the rest of my left side is blocking veins to stop all the blood from going there.  This is causing swelling on my whole left side.  My left boob looks like you should put a halter on me and drag me to a milking machine.  The surgeon was throwing around taking out this access and going down to my leg.  I didn't exactly tell him no, but NO.  My right arm has nothing to offer.  It has already been mapped. 

I don't want a cath, but I don't want a fistula in my leg worse. 

What did you end up doing.  (Sorry if the answer is in another post)

[jbeany]

They tried to "jump" the graft to another vein in my arm.  The surgeon went in, couldn't even find the vein that had been mapped for the purpose, and gave up.  My arm swelled up like a balloon, and sticks hurt like crazy for the next month.  Then the swelling went down, and my graft has been working fine ever since.  Apparently, we scared it into working the way it's supposed to.  I've had one other fistulagram on it, but the pressures have stayed where they are supposed to.  Before the surgery, I was needing fistulagrams every 3 or 4 weeks.  The doc doesn't have a clue why it's changed - but I'm not complaining.

The surgeon's original plan was to map both arms, and immediately start on the right one if the surgery on the left didn't work.  I refused.  So if the graft finally does die, I'll get a chest cath.

[Rerun]

Great Jbeany.   


My problem is too much blood in my fistula.  They may go pare it down so less blood goes in.  I don't want the leg fistula.  They had told me a long time ago that they didn't want to put a stent in my chest to keep the veins open because it would be the last thing they could do.  So let's do it now!!!

[jbeany]

Isn't annoying how casual they can be about fixing something that's keeping us alive?