Three fistula operations; three failures.

[RightSide]

I've been trying to get a fistula to replace the catheter I've had since October.

I've had 3 operations on my left arm, so far with no success:

The first one, in my forearm on March 25, the vein clotted completely in about 5 weeks after the surgery, and I never got a day's worth of use out of it.

The second one, in my upper arm on July 2, ruptured within hours after the surgery was over, and was unusable.

The third one, also in my upper arm on July 4, was a repair of the second one.  This one seemed to be going OK for about 4 weeks--but now the thrill and bruit are disappearing, just like what happened with the first one.  Looks like it's clotting too.  I'm very disappointed. 

What could be causing these veins to keep clotting up? 

Has anyone else had THIS much trouble getting a fistula?

Is there some "last chance" surgeon or hospital I should try?
I'm getting desperate.  I absolutely HATE the catheter, and I can't bear the thought of having it for the rest of my life!

[Hanify]

How disappointing Rightside.  Hopefully someone else has some answers.  Thinking of you.

[okarol]

 I have no answers. Do they have you taking baby aspirin to minimize clotting? Did you do the squeezing exercizes?
I'm sorry you've had such a difficult time.
Jenna's 2nd fistula (actuallly a revision of the first failed one) finally worked.
Are you having the same surgeon do it each time? We switched to a vein doc who did all the kids at children's hospital and he was known for making things work (for adults too!)

[Zach]

What is your hematocrit?

With my nephrologist's approval, I take an aspirin every night before going to bed.

And I always use "wet" sticks ... a syringe with saline is attached to the needle tubing to first pull back, then flush after cannulation.

 

[paddbear0000]

I'm sorry this is happening. I don't have any advice, especially since I'm starting to have graft issues now myself. I can offer a hug tho!! 

[noduh]

I am so sad for you.  I have had 3 fistula that clotted, Each one had several trips to the access center before they completely closed.  I even got steal syndrome from one and almost lost my little finger. I was given a graft in my left arm. That was 2 times in 2 months to the access center.  We finally decided on a PD catheter. 2 weeks before that was ready to use the graft failed and I had to have a catheter in my neck,I look like the bad guy in spiderman with appendages every where, Now the PD won't work so we are working on that.  I am weighing the quality of life with all these problems as to the freedom of the time I will have left if I just quit all the dialysis and enjoy what time is left.  I haven't been on dialysis a year yet and it seems to be one thing after another.  It is getting more difficult to keep a positive attitude.  I have no fixes for you, hopefully we can know that others are struggling and hanging in there. I am sure things even out eventually, I hope it will be sooner than later

[RightSide]

Thanks for the kind words.  I could sure use as much encouragement as I can get.

I need to correct something I wrote though.

Earlier today, I visited my surgeon, who did an ultrasound on my fistula.

This time, the problem isn't clotting.  It's neointimal hyperplasia (google for THAT term if you wish).  So low-dose aspirin wouldn't have prevented this.

That means that part of the vein has to be spliced out, and a segment of vein taken from another part of my arm will be spliced in.  That makes a total of four incisions on my left arm, each healing with scarring.  My left arm is going to look like Freddy Krueger.  And the clock gets reset again--even if this works, it won't be ready for use till mid-October at the earliest.  That means I will have had the catheter in me for a whole year.

Incidentally, some of the measures known to prevent neointimal hyperplasia sound worse than the disease:  Frequent radiation treatments???

[Hanify]

Ouch!  But just think.  You could do a really good costume if you went to a dress up party!  I keep trying to think how I could factor in my catheter into a dress up - and swing it around, or pretend to drink margueritas through it or something.

[RightSide]

The sad part is that none of these fistula operations ever resulted in a working fistula.  Not a single one of them lasted to the point that it could be used for cannulation.  Each of them failed less than six weeks after the surgery.

It's beginning to look like I'm not going to get a working fistula or graft.  And the catheter sucks, frankly.  I'm just aboiut close to giving up altogether.

[Hanify]

Sorry if it's been covered before, but is PD an option? 

[G-Ma]

I'm struggling to keep my fistula open...my BP is so low that not enough pressure through the fistula and it collapses around the needles and then clotting in the lines.  No answers on this.

[petey]

I can sympathize with those here struggling to get/keep a good access.  When Marvin first went on dialysis (emergency -- we didn't see it coming), he had a perm cath.  The surgeon said he'd need a "permanent" access and soon implanted a graft in his upper left arm.  That graft got infected before he could leave the hospital (never got to use it once) and had to be removed.  Marvin almost lost the entire arm because it was so bad, but the surgeon took a vein out of his thigh and spliced the upper arm vein back together.

Marvin doesn't have a clotting problem -- he has the opposite.  He has a disease called ITP which means he has very, very low platelets (hence, not clotting is his problem).  Because of everything with the first failed graft, we were all hesitant to try again (docs included).  We tried PD for a couple of months (Marvin kept that same first perm cath for 18 months), but when that didn't work, he was back to the perm cath.  Those first 4 years, he had about 10 different perm caths (after the first one quit working, the others didn't last long).  About a year and a half before his transplant, we were all ready to try again with a permanent access (those veins in his clavicle were getting very scarred).  He had a fistula put in his left wrist (even though there was some question if they'd ever be able to put something in that arm again after that awful first graft).  His fistula worked beautifully for a year and a half.  Then he got a transplant.  A month later, his fistula clotted off.

When Marvin went back on dialysis three  years later, they said they couldn't repair the wrist fistula.  Perm cath.  Then they tried a graft in the upper right arm (and Marvin's right-handed).  It worked okay for about six months.  Too many infiltrations (damn nurses and techs), and then he started having problems with it.  Perm cath.  Two more grafts in the upper right arm (one only lasted two weeks -- too many infiltrations!).  Another perm cath and then another (he's had 14 perm caths all total).  Marvin's surgeon (greatest knife man in the world) said he needed a permanent access -- he suggested groin area.  Marvin said, "No. No. No."  The surgeon did mappings, tests, and research, research, research.  Then he offered us the chance at an experimental procedure.  He would "create" a permanent access in Marvin's left inner forearm (not far from his old fistula) by taking a vein out of the back of the arm, flipping it around inside and strengthening it with a vein out of Marvin's other thigh.  He said there was a 10% chance it would work.  Marvin decided to go for it.  That fistula has now been serving Marvin for over five years.

Sometimes, it's a hard, hard road to getting a good working permanent access.  Ask the surgeon what else can be done.  Be willing to try something, even if it's "experimental" -- because it just might work.  If you're anywhere on the east coast, you might want to try Dr. Richard L. McCann at Duke University Hospital.  He's the best vascular surgeon in the world.  He's operated on Marvin about 20 times and actually saved Marvin's life a couple of times.  He's good -- he's very, very, very damn good.

Marvin's been left with many "open" wounds, many scars, and many frustrations in his journey to get a good fistula.  But, now he has one, so I guess it was worth trying, trying, trying, and trying again.

[pklipe57]

I had my original fistula surgery in February 2009 and had it angioplastied in April, 2009.  In June, 2009, I had the upper part of my fistula worked on by moving the veins closer to the surface of my skin and then had it angioplastied again in July, 2009.  I am now using the fistula and am scheduled to have my catheter removed on Tuesday. 

Long story short, I would keep after it.  I am so looking forward to life after the catheter.  Also, my surgeon is well known and people come from all over to see him and have him do their fistulas.