DID MY DOCTOR MESS UP - or is this normal???

[KidneySinger]

I have a failed fistula but let me tell you the story....
I go to Mayo, thinking I have great docs and they will do everything right.
My GFR is 18 and my Neph wanted me to get a fistula to prepare and have it ready for the future.
I did all the pre op, mapping and so forth and they were putting it in my upper arm.
I went in for the surgery and all seemed to go well.
I never saw my doctor after the surgery and they sent me home after several hours of recovery.
After a couple of days, I read that I should feel a buzz....and I didn't.  I called the doctors office and they told me not to worry, it takes weeks before you feel it.
My post-op appointment was 2 weeks after the surgery.  I went in and sure enough, nothing.
They sent me for a sonogram and verified a blockage.
They then scheduled a 2nd surgery to try and unblock with a cathetar - it was scheduled for a week later.
I got a call that they had to re-schedule and now it was 2 weeks later...a total of one month had passed.
I went in and got all pre-opted with IV and ready to go...the doctor (different doc) came in and looked concerned and told me he was going to call my other doctors because he didn't want to do the procedure.  He said it had been to long and it wouldn't work.  They sent me home.
I now have a failed place in my arm that can no longer be used.
I went in today, 2 months after my surgery and saw my doctor for the first time...he wants to do a graph in the forarm.
Maybe these things happen but it does not seem normal to me.
I know fistulas fail, but it seems they should have tried something earlier...this was major surgery for me and I ahve a 6 inch Z in my arm, all for nothing, and can never be used again.  And to make matters worse, my hand is STILL swollen.  I can't wear a watch, a ring and can't put on a extra large gardening glove...2 month later.
What do you think?
Thanks!

[lmunchkin]

I do recall when my husband had a fistula put in his arm, it took several  revisions of the fistula.  They tend to have what was described to us, "shoot offs" from the veins they tied together. But it was the same fistula.  And I believe he felt the "frill" right after surgery.  It may differ from one to another, but Im sure he did feel it right after.

Not all surgeons doing fistulas are Vascular Surgeons.  Get some references on these surgeons and know a little about their background.  We did our research and got an excellent VS.  He has done several surgerys on John and I would trust no other with his surgerys.

If you had it in your upper arm, it could be (idk) that there may have been too little flow there, but at least they tried.  It sucks, I know, it seems like it will never end, but it will soon ease up and straighten out.  At least you have some warning and you know it is coming down the pipe.  Lots on here, including my J., were unaware and it was an emergency situation, they had to have Dialysis or die!

Hope you get it sorted out.  Just please be careful and research "Everything".

God Bless,
lmunchkin

[okarol]

Our (18 years old at the time) daughter's original fistula surgery (upper left arm) had to be redone. The first doctor botched it and wanted to abandon the artery and switch to her upper right arm. Luckily we were able to find another vascular surgeon who saved the vein and artery and got the fistula to work. It was weeks later, but he did vein mapping ultrasound and said it was 50-50 chance of revising it to work. What a relief when he came out of the OR smiling! It took about 5 months to mature and worked great for 2 1/2 years, until the day of her transplant, when it clotted, probably because she was getting good red blood cell production.
Not all vascular surgeons are created equal. We found the good one by asking the nurses at the dialysis unit who was best. I wish we had known that in the first place. They told us that the 2nd doctor did all the fistula's for pediatrics at Children's hospital, and was very skilled with challenging cases.
If it were me I woud see if there's a creative surgeon who might take a chance on snipping a bit of the vein and seeing if they can save it. Don't these people realize that kidney patients need to be super cautious about their access?!
So sorry for you, it's very upsetting. 

[KidneySinger]

Its so bizzare.  I had what I though was one of the best vascular surgeons.  He has mulitple books on Amazon and the main doctor at Mayo Clinic...can it get any better than that?

[Home hemo]

Its so bizzare.  I had what I though was one of the best vascular surgeons.  He has mulitple books on Amazon and the main doctor at Mayo Clinic...can it get any better than that?

I think the thing to ask is whether they have done fistulas before, how many, the results, experiences with fistulas in particular.

My husband's fistula was put in by a General Surgeon, not a Vascular Surgeon, but he's well known to the kidney docs and does lots of these kinds of things.  He is excellent and has been known to even answer paged questions when on vacation, to stop out in the Ultrasound waiting room to talk to my husband between surgeries on other patients, and would never not look at a surgery he had performed.  He just knows his business, and knows that these things have lots of issues for consideration.

When we went to the Mayo, honestly a doc there said my husband was the first "living" patient he'd seen with no kidneys at all.  They were worried my husband's fistula was going to blow because it was so big.  They are thorough but just did not have the experience that my husband's local kidney doc had with dialysis patients let alone fistulas.

So I'd get a 2nd opinion and ask specifically about experience in this particular area.  It really is a specialty and fairly recent at that - it hasn't been the norm to create & use fistulas for all that long.

[stringbandbeth]

My husband went through 3 docs and 6 procedures before they finally managed to get his upper arm fistula working. The surgeon who placed it was unavailable to take care of 2nd procedure and we were told by the new guy that they would have to abandon the site. We got a second opinion from a Doc. outside the Yale system who ha done many fistulas. He said he could fix it but he was 75 years old and we didn't feel comfortable with him doing the actual surgery. We were finally able to get the original surgeon to do the surgery. ( not an easy feat he is the chief of interventional radiology at Yale New Haven Hospital and doesn't normally see patients who aren't in ICU). The fistula has been perfect for more than 2 years now and he is the only Doctor who is allowed to touch it !
      2 months does seem like a really long time to follow up on a fistula that doesn't have a thrill. I would talk to someone at a dialysis center and try to get the name of a surgeon who has done a LOT of fistulas. It's possible that it can be fixed. At least worth trying before abandoning it.
                My best to you.

[sullidog]

My prev surgeon kept having his IVR work on my graft, I was going in for interventions every month, finally I had enough, I went to the surgeon I have now and no one else will work on my graft but him. He found it all full of plack and debris that he had to surgically clean out and oh yeah a lot of stenosis too. My prev surgeon said there was nothing wrong with it, well looks like he was wrong.

[M3Riddler]

I have a failed fistula but let me tell you the story....
I go to Mayo, thinking I have great docs and they will do everything right.
My GFR is 18 and my Neph wanted me to get a fistula to prepare and have it ready for the future.
I did all the pre op, mapping and so forth and they were putting it in my upper arm.
I went in for the surgery and all seemed to go well.
I never saw my doctor after the surgery and they sent me home after several hours of recovery.
After a couple of days, I read that I should feel a buzz....and I didn't.  I called the doctors office and they told me not to worry, it takes weeks before you feel it.
My post-op appointment was 2 weeks after the surgery.  I went in and sure enough, nothing.
They sent me for a sonogram and verified a blockage.
They then scheduled a 2nd surgery to try and unblock with a cathetar - it was scheduled for a week later.
I got a call that they had to re-schedule and now it was 2 weeks later...a total of one month had passed.
I went in and got all pre-opted with IV and ready to go...the doctor (different doc) came in and looked concerned and told me he was going to call my other doctors because he didn't want to do the procedure.  He said it had been to long and it wouldn't work.  They sent me home.
I now have a failed place in my arm that can no longer be used.
I went in today, 2 months after my surgery and saw my doctor for the first time...he wants to do a graph in the forarm.
Maybe these things happen but it does not seem normal to me.
I know fistulas fail, but it seems they should have tried something earlier...this was major surgery for me and I ahve a 6 inch Z in my arm, all for nothing, and can never be used again.  And to make matters worse, my hand is STILL swollen.  I can't wear a watch, a ring and can't put on a extra large gardening glove...2 month later.
What do you think?
Thanks!

KidneySinger,

I know you posted in July, but wanted to give you my opinion.

That is a major srcrew upin my book.  You should immediately feel a pulse and thrill in the fistula. They should have sent you home with an exercise squeeze ball as well as a stethescope to listen to the fistula daily.  They should have given you emergency info and number in case you didnt feel anything or hear the sound.   
The next screw up was when they scheduled it for 2 weeks later.  If you do not feel or hear anything, this should be an emergency fistulagram to try to find out why - usually a clot or stenosis.  If immediate actiion is done, then there are techniques they can use to unblock or declot the fistula.  Waiting that long is only going to cause it to close off and more it more difficult as time passes, especially if its a clot.
i would defintely raise a stink to everyone involved iin your care when it was created.
I have heard of issues like yours way too often.   Whenever someone has an issue with their fistula, make sure the doc tells the nurse that it is an emergency. Otherwise, the nurse may call to make you an appointment and take the next slot available, which can indeed be 2 weeks later.  The fistula is your lifeline to dialysis and your life.  I would be calling and writing letters!!!  Your nephrologist should also have known what to do in my opinion.

///M3Riddler

[amanda100wilson]

what was the diameter of the vein that they did the fistula on?  if it was less than 6 mm then it shouldn't have been used and probably would never have matured anyway?  I had one done on my wrist and it was only afterwards that I was told by another surgeon that it shouldn't have been done there.  am I annoyed, yes? but it is not worth dwelling on it. 

[KidneySinger]

It was more than 6.  Going in next Friday to try again in a different spot.  Different surgeon this time.  Keep your fingers crossed - I need a good fistula.

[natnnnat]

Good luck KidneySinger, hope you get a good one this time.   

[Rerun]

Yes, you should feel or they should hear a thrill "BEFORE" you leave from the hospital.  That is BS that they lost that site.   You have MIMIMAL sites that can be used for dialysis and they just f-ed up one of them!  Really?  Are they kidding?  You better tell this new guy to try and save that first site. 

I'd be so mad!

[KidneySinger]

I feel the same way.  I am extremely upset because I called them and they (MAYO CLINIC) told me not to worry - "it takes months to feel it".  Now, they just sent me a bill for my portion of the surgery which is almost 3k that I have to pay out of pocket...!  The insurance company paid them 20K.  I don't want to sue them, but should I?

[lmunchkin]

Don't even get me started on the charges for these surgeries and Dialysis Period!  The only reason its soooo expensive, is because they know it is very much needed, so they jack up the prices.  It really Chaps my A--s!

I agree with Rerun, you need to see if they can fix the first one.  Insist on it if you have to. Sometimes, they can save it. And definately make sure they hear the "thrill" and give you the Tools you need to go home with.

God Bless,
lmunchkin

[KidneySinger]

Well.  I had my second attempt on a fistula on Friday...it worked    The NEW doctor and NEW hospital told me that went he went in to perform the surgery, he found Mayo had not only had a failed fistula, but they had clamped off the vein he was going to use!  Apparantly he found another and I could feel it the first day.  I can hear it as well when I put my ear to my arm.  It is deep and I will need another surgery when it grows to move it more towards my skin when it grows, but at least i have something working!

[Traveller1947]

What a relief!

[Fatkidney]

Happy to hear this!   
We had our successful surgeries on the same day.  Must have been some good mojo working for both of us.  It really is cool to feel it and know it's working.  I now realize just how dead the first one was from the get go.  I hope that was your last bump in the road and things go smoothly for you from here on out.