Post tx fistula/graft pain?

[Angiepkd]

I am over two years post tx.  My fistula (that was revised to a graft) was left in place, even though it had clotted and was no longer working. For the past week, I have had increasing pain in my left arm, along with some minor swelling and tenderness near my wrist. Prior to D, I had a failed lower arm fistula that didn't mature, a new LUA fistula that did mature, but had to have many revisions including a flow reduction and ultimately a graft placement. My tx team's stance on a non-working access is to leave it alone.  This was fine with me until all of this pain and aching started.  Has anyone else experienced this?  I had an EKG recently, and do not have any known heart problems, so I am pretty sure this is fistula related. I know I am going to have to get a referral to the vascular surgeon, but was hoping someone here had a similar problem and could share their resolution.  I am beyond burnt out on doctor visits and surgeries, so I am procrastinating in hopes it will resolve itself. Thanks in advance for any advice.

[MooseMom]

I'm sorry you're having trouble with your fistula.  Mine ached for the entire 4 years that I had it.

Mine started growing into my neck 2 years after tx, so I had to see a vascular surgeon and get it shut down.  I didn't have a choice.  But my experience is different than yours, so all I can say is that yes, you should see a vascular surgeon just in case something weird is going on.  I'm sorry I have nothing worthwhile to say other than I hope you get to the bottom of this.  I'll be very interested in hearing what you find out!

[Angiepkd]

I'm sorry you're having trouble with your fistula.  Mine ached for the entire 4 years that I had it.

Mine started growing into my neck 2 years after tx, so I had to see a vascular surgeon and get it shut down.  I didn't have a choice.  But my experience is different than yours, so all I can say is that yes, you should see a vascular surgeon just in case something weird is going on.  I'm sorry I have nothing worthwhile to say other than I hope you get to the bottom of this.  I'll be very interested in hearing what you find out!

Thanks, MooseMom!  Mine hasn't worked for over two years, but never really hurt or bothered me.  I guess I will call the tx doc tomorrow and see about an appt. with my vascular surgeon.  It kind of stinks because I am finally feeling like my old self again, and was hoping to be done with surgeries, etc. for a while.  I am glad to be here doing well, and know I have no right to complain.  I have been through so little compared to others.  Just another bump in the road.  Hope you are doing well!

[MooseMom]

I know what you mean about feeling disappointed that there is yet one more thing you have to deal with.  It is ideal to leave alone either a working or non-working fistula after tx as you know, but that's just a guideline.  My feeling was that I didn't go through the years of pre-dialysis emotional turmoil and then the blessing of transplant only to have it all derailed by a stupid fistula that decided it had a mind of its own.

While I was not happy about having to go through yet another procedure, the end result was a MUCH better quality of life!  I had developed a throbbing blood vessel right above my left collarbone; I had assumed it was just a normal thing.  But when my tx neph felt it, her eyes went wide and she proclaimed, "What IS that?"  She thought it was an aneurysm, and I freaked.

My vascular surgeon took one look at it, shrugged, and then he placed a finger across the fistula to block the blood flow, and voila...no more throbbing blood vessel in my neck!

Hopefully whatever is going on with you will be as easily dealt with.  And then you will feel even BETTER than your "old self"!  I know I did!!

Keep us posted, OK?  Let us know when you get that appointment.

[cassandra]

I'm sorry to hear about the fistula/graft problems, but when I had thrombosis in my fistula a couple of years into TX they removed everything (day surgery) The thing is that you could get an infection with your compromised immune system.

Love and luck, Cas

[Angiepkd]

I'm sorry to hear about the fistula/graft problems, but when I had thrombosis in my fistula a couple of years into TX they removed everything (day surgery) The thing is that you could get an infection with your compromised immune system.

Love and luck, Cas

Thanks, Cas.  Funny you mention thrombosis and infection.  Last Sunday I had a pretty high fever (for me).  It got up to 102.3. I was in bed all day and then felt fine the following morning.  This was around the same time the arm pain got worse.  Guess I better see the doc.     I don't need another hospital stay!