AV Fistula

[AnnieB]

Well, I saw my neph today and he wants me to see a surgeon about getting a fistula placed. My creatinine has been hovering around 3.3 and my last eGFR was about 14. I definitely don't want to wait until the last minute to have an access created and wind up in the ER doing emergency dialysis... I'm still hoping for a possible transplant, so will be checking out getting on the list after Christmas.

Anne

[MooseMom]

I got my fistula placed when my egfr was 15-20 and my creatinine was in the high 2s, so I was not far off from where you are now.  I was absolutely terrified the day of surgery because getting a fistula meant that the inevitable was in sight, you know?  That was a real psychological blow for me.  But oddly enough, once I had it placed, I felt relief because I knew that I wouldn't need D on an emergency basis, so I felt safer. 

I ended up not needing it.  Hopefully, I never will, but it is still there, just in case.  Checking out getting on the list would be a great Christmas gift for yourself.

[Fatkidney]

Hi Anne.  I was in a very similar boat to you when we started my fistula process. That was in July.  I had two failed fistulas. One at the left wrist, the second inside the left elbow. Turns out my veins were too small. Now I am three weeks post surgery with a fistula that was constructed with the basilic vein in the back of the left arm.  It is working well and it's a huge relief.  I, like you, was worried about needing emergency dialysis.  I have no interest in a chest catheter.  It's so nice to have this thing working and ready to go.  So I suggest getting on it pronto, because unfortunately sometimes it takes a little while to get it going.  Hopefully you have nice veins that are willing to expand and the first shot at it will be all you need.  I wish the best of luck to you and happy holidays! 

Amy

[AnnieB]

Thanks for the support! None of this seems real to me yet....I guess it will, after I talk to the surgeon....

Anne

[Clara]

AnnieB,

I just finished my 2nd surger at the end of Decmeber for an AV fistula.  It has helped me feel better about what is to come.  I look at it as my lifeline.  It is precious and I know they don't always work out.  Mine only had a 20% chance of sucess.  I know there can still be complications but it was the only vein that would be suitable and was super small.  I call it "my little vein that could".  The surgeon said it is now a beautiful mature fistula.  Good luck with the surgeon.  Let us know if you need anything.

Christi

[Rerun]

I don't know..... I guess I take the hard road.  If I wanted a transplant and I wasn't highly sensitised or anything.... I would wait until it was an emergency.  In an emergency they go and put a cath in your chest (no needles) and they start the fistula process then.  Hey, you may get your transplant before all this.

In my situation having to go back on dialysis after a transplant of 17 years, they wanted me to go get a fistula so I did and a week later I had to have emergency dialysis anyway so had to have the cath anyway!!! 

[skg]

I got my fistula placed when my egfr was 15-20 and my creatinine was in the high 2s, so I was not far off from where you are now.  I was absolutely terrified the day of surgery because getting a fistula meant that the inevitable was in sight, you know?  That was a real psychological blow for me.  But oddly enough, once I had it placed, I felt relief because I knew that I wouldn't need D on an emergency basis, so I felt safer. 

I ended up not needing it.  Hopefully, I never will, but it is still there, just in case.  Checking out getting on the list would be a great Christmas gift for yourself.

Is that typical -- to get a fistula even if you are planning/hoping for a transplant?

I saw someone's post where they were talking about tying off a fistula after having gotten a transplant?

I'll be referred for a fistula next month, most likely.

cheers,
skg

[MooseMom]

I got my fistula placed when my egfr was 15-20 and my creatinine was in the high 2s, so I was not far off from where you are now.  I was absolutely terrified the day of surgery because getting a fistula meant that the inevitable was in sight, you know?  That was a real psychological blow for me.  But oddly enough, once I had it placed, I felt relief because I knew that I wouldn't need D on an emergency basis, so I felt safer. 

I ended up not needing it.  Hopefully, I never will, but it is still there, just in case.  Checking out getting on the list would be a great Christmas gift for yourself.

Is that typical -- to get a fistula even if you are planning/hoping for a transplant?

I saw someone's post where they were talking about tying off a fistula after having gotten a transplant?

I'll be referred for a fistula next month, most likely.

cheers,
skg

Yes, it is typical to get a fistula even if you are planning/hoping for a transplant.  People wait years on the list before getting a cadaveric transplant, and almost all of them will need dialysis before they even get a first call.

As for PLANNING a transplant, if you have a living donor already vetted and willing to donate, and you are not yet on dialysis but are still eligible for a tx (meaning that your egfr is below 20 and that you yourself have already been through the whole pre-tx evaluation and testing process), then no, you probably won't need a fistula.  BUT if you have already been cleared for tx and are therefore on the list, and your potential donor has not even started testing, then you will have to discuss this with your neph.  Your donor may change his/her mind altogether.  A lot, if not most, potential donors make an offer but then do not follow through, or they may begin testing and find they are not eligible after all.  It is amazing how many potential donors find out through the testing process that they have some hitherto undiscovered medical issue of their own.

My tx team has never mentioned "tying off" my fistula after transplant.  Such a procedure isn't done unless the fistula becomes problematic.

[cariad]

I was given excellent advice by jbeany when I was in the nearly the same predicament as some of you, transplant on the horizon but little control over the timing of it all.

I had a potential donor who had not been through the eval yet, and a transplant that could only be scheduled at the hospital's leisure since it was part of their clinical trial. My gfr was 12-14 and the useless nephrologist I was seeing was trying to convince me that a tunneled line was a death wish.

The bit that makes deciding to go through with getting a fistula all the more difficult is that in the vast majority of cases, once a fistula is installed and then stops working, you have used up that site for good and all. There are a limited number of access sites on any person, so if you are one of the younger transplant candidates, you'd be wise to keep in mind the possibility that you may need to return to dialysis one day. Additionally, fistulas can and do clot off on the day of transplant. My first fistula stopped working on its own, either on the day of the transplant or shortly thereafter. As far as I know, there is evidence that fistulas that do continue to work after transplant can cause damage to the heart, so that would be why some doctors may recommend tying them off.

I knew it was the right choice for me to try to get to transplant without a fistula - my veins are quite small and it was going to be a battle to get a working access, the vein mapping had taught me that much. Before my first transplant sites on both wrists were used and rendered useless for future access points. I would recommend that everyone facing a fistula get a vein mapping and then take the information they get from that and think it over. With me, even the vascular specialist who performed the vein mapping let out a sigh of relief when he asked me what I wanted to do, and I said "get a preemptive transplant". The vein mapping made my decision so much easier, and since it was scheduled on its own and not straight before an operation, I could calmly consider my options.

And yes, I did make it to transplant before needing dialysis (although I did have a few days of dialysis with the line - it's complicated, but irrelevant to my opinion on this.)

[AnnieB]

I was told that it can take about 3 or more years for a transplant in my area to become available...and it seems unlikely that I can hold on for that long without dialysis with a GFR of 13 - 15. I haven't begun the workup for transplantation either, and I don't know how long that takes....On the other hand, how long was it for you between the time you saw the surgeon and the time you got your transplant? It might be worth considering. I'll be talking with the surgeon in a few weeks, so maybe I can bring that up.

Anne

[adairpete]

I agree with the others that a fistula is sort of like an insurance policy.  I did things backwards (didn't know it was backwards at the time) and got the chest catheter first (thought I'd only be on dialysis a few months until my mom was approved to donate, but then she was disqualified).  I will never do hemo again.  I had nothing but problems with the chest catheter (and hemo in general).  I went through 5 in 5 months-they kept clotting up and the last one fell out.  I got up from bed and it literally hit the floor.  I got a fistula and a PD catheter placed, and although the fistula never worked, the PD catheter does and so far that's all I've needed. I would recommend getting a fistula and making sure it matures that way it's there if you need it and hopefully you'll never need to go the chest catheter route. I would also recommend doing PD or other form of home dialysis, but each has its pros and cons.

[AnnieB]

I have an appointment with the surgeon in a couple of weeks for a Doppler and to talk with him about access. I also just spoke with one of my sisters and she is still possibly interested in being a donor. It might be worth looking into a preemptive transplant if that's something that wouldn't take too long to process. Sounds like I need to talk to my nephrologist and the transplant center to see how feasible that is. 

[Clara]

Well having the final surgery for my fistula in December 2012 seems to have been a good decision.  I showed improvement from 18 eGFR to 28 eGFR from November  2012 to April 2013.  However, my latest labs have me back down to 20 eGFR.  This progression is unpredictable.  I could wake up tomorrow and need dialysis.  Having an emergency catheter would be easier, but as a diabetic, I am well aware of the risks of infection.  Many die from infection in the catheters which have a direct line to your heart.  I just wanted to give myself the best chance to receive a transplant, God willing.  Each person has to way their own options.  Good luck.

God Bless.
Christi

[AnnieB]

I just had a fistula created three days ago, and am going to try to add the pictures. For some reason Epoman's resizing program isn't working (maybe not compatible anymore?) so please bear with me if they don't come through or if the pictures are real big. I decided to go with nocturnal, so the fistula is in my left AC. No real pain, but I can see it will take some getting used to.

Anne

[AnnieB]

Thanks to everyone who put in their  . After talking with the surgeon and my sisters and the transplant center, I decided to go ahead and get the fistula (I decided against PD, for several reasons). I won't be able to start looking at transplant until November at the earliest, due to my insurance situation; and I don't have $ right now for the tx evaluation until that's cleared up. It's been three days since my surgery, and aside from looking like a grizzly was chewing on my arm, it really doesn't bother me that much - though I still have to get used to all the things I have to watch out for now and the restrictions on taking care of the access.

Anne

[amanda100wilson]

'I got attacked by a grizzly' would be a fun thing to say to anyone that comments om your arm.   

[AnnieB]

Yes, that was going to be my standard answer!  Home from the hospital - and now am dealing with almost the worst constipation I've had in ages. For some reason, no one thought to tell me that could be a side effect of the meds and I should be proactive....I tried Dulcolax and Metamucil, with almost no good results. My pharmacist has moved me up to Miralax...that seems to finally be having an effect Thank God....You never appreciate what you have til it's gone, ain't that the truth.....