Helpppppppp-My new fistula doesn't work

[KidneySinger]

So I went through surgery for my first fistula 2 weeks ago at Mayo Clinic with a very good Vascular surgeon.  Went in for my 2 week check up today and they didn't hear anything - so I went for a sonogram today and sure enough....I could see the blood stopping at a certain point and a big bloodless vein staring me in the face.
So what happens now?  The tech was not permitted to tell me anything but it was very obvious.
Does this happen?
I'm sure I will hear from the surgeon tomorrow.  Do I do this again?  I was born with kidney disease and it runs in my family big time so I am thankful to hit 50 before having to treat it...but not a good start 

[jbeany]

Okay, deep breath here first....

Yes, it happens.  Unfortunately, all too often.  My first one lasted less than 2 days, and it was done by the most highly rated surgeon in the area.    

They may yet be able to fix this one.  It's most likely that they will try that first.  If they can't unclot it with a balloon or a stent, they may try a surgical intervention, and open the incision back up and try again.

Worst case scenario - they try again in a different spot.  It's not a good thing, since possible fistula locations are limited, but it's the only option if they can't fix this location.

[smcd23]

Tony has a problem with blood clotting when he has an arterial cut - his first fistula in his wrist didn't work, but that spot doesn't always take anyway. So they did the 2nd one in the upper arm, and it worked in the hospital but when he went for follow up, it didn't work. Then he had a transplant and clotted the kidney within hours. So when they did the 3rd fistula they started him on blood thinners immediately, and he had to stay on them while he was using the fistula. When he started PD, he stopped taking the blood thinners and it clotted off within a few weeks to a month.

I would suggest having them look to see if this one can be salvaged, and explore what happened. Ask about going on blood thinners. Tony clotted fine on paper, but when he has the arterial cut, that all goes out the window. The doctors at both hospitals said that can happen in kidney patients with no good explanation. There are theories like it's due to the uremia etc but nothing proven.

Good luck, it does happen, and the only thing I can say is make sure you are persistent to find out why and how to prevent it. If we had been more persistent and didn't accept the "well sometimes the wrist doesn't take" and the "sometimes they clot" explanations from the vascular surgeon, he might not have clotted off my kidney.

[M3Riddler]

So I went through surgery for my first fistula 2 weeks ago at Mayo Clinic with a very good Vascular surgeon.  Went in for my 2 week check up today and they didn't hear anything - so I went for a sonogram today and sure enough....I could see the blood stopping at a certain point and a big bloodless vein staring me in the face.
So what happens now?  The tech was not permitted to tell me anything but it was very obvious.
Does this happen?
I'm sure I will hear from the surgeon tomorrow.  Do I do this again?  I was born with kidney disease and it runs in my family big time so I am thankful to hit 50 before having to treat it...but not a good start 

KidneySinger,

They should have provided you with a stethescope and stress ball to exercise the fistula as well as listen to it.  Did they put in a fistula or a synthetic graft?  A fistula uses your own veins/artery while a graft is synthetic and man made. This is usually easier for the surgeon, but does not last as long for the patient.      They should have taught you to listen to the fistula with a stethescope and monitor for changes in pitch and sound.  Also, they should have trained you how to feel for the bruit and thrill that the fistula makes.   This should be monitored daily for changes.    If you do not feel anything or hear anything, this is a signe it could be clotted off or other issues.   It is important for you to get this looked at asap as time is critical. The longer you wait, the less chance of fixing the issue.      If they schedule you for a fistulagram, this should be done asap as an emergency case.  Many times the nurses will call to make an appointment and not let them know that it is an emergent case and needs to be scheduled asap and it ends up being a week or more later and then you loose your dialysis access. I have seen this happen many times.   It is important for you to speaki up and educate yourself as much as possible.  Dont be afraid to advocate for yourself...

Here is a great website that will explain everything you need to know about your dialysis access.... 
It is called Fistula First...

http://fistulafirst.org/HealthcareProfessionals/WheredoIstartifIamadialysiscenter/CannulationoftheAVFistula.aspx


///M3Riddler

[Fatkidney]

KidneySinger,

Do you know anything else yet?  I'm in the same boat, so I'm really curious about how yours turns out. I had mine last Tuesday and three people listened yesterday and couldn't hear anything.  I just happened to have Dr. appts. It was for the fistula.  I'll get the real check of it on the 13th.  But I have a bad feeling about it. I'm just trying to sqeeze my ball whenever I can.  I've been keeping a balled up sock in the car so I can squeeze it while I drive.  I hope your fistula comes to life for you. 

Amy

[KidneySinger]

Yes, it was a fistula and no, it didn't work.
I really am disappointed and posted a new post about questioning whether my doctor did the right thing or not.
They waited a full month after my surgery to try and unblock it.
I went in for the procedure, they IV'd me and got me ready for the surgery and a new doctor came in and told me he was not going to do the surgery because they waited to long.
Great...so I called 2 days after and warned them and they told me not to worry, it takes weeks to feel anything...not!  Now my arm is ruined for a future fistula and I went in today and they want to do a graft in the lower part of my arm.  They were dumfounded as to why it didn't work.  They said my veins were great in my upper arm.
I really think the doctor screwed up by not seeing me.
His nurse saw me 2 weeks after, she ordered the next procedure which got cancelled and rescheduled for 2 weeks later - so a full month went by with no hope of saving it.
I saw my original doctor today for the first time...2 months later.
Not sure what to do.

[Fatkidney]

I'm sorry you had to go through that ordeal.  It's such a shame that they can't try again in the same spot.  Mine is in my left wrist, so if it fails they'll move to my elbow I guess.  I had gotten a gfr of 15 which prompted the fistula surgery, but it was at 18 the day I had it.  So hopefully I have some time too. 
Best of luck to you. 

[Whamo]

My first fistula stopped working once they tried the bigger needles on it.  It lasted about two months.  My second fistula works, but I hate it.  I'm going to CAPD.

[Rerun]

My graft was working but on Friday he went in to fix a couple of narrowings.... now it doesn't work at ALL.   Then it is the weekend.... then he has clinic today so tomorrow he will go TRY and fix it.

I guess it isn't that urgent!   

[Whamo]

Dang, Rerun, it sounds like you can't catch a break.  Good luck.