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February 18, 2009

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Jenny Patterson

I understand your attachment - My graft clotted a bit over three months after I had my transplant. I remember calling the transplant clinic - "my fistula clotted" "Yeah. Are you sick?" No. But MY fistula clotted" "Are you running a fever?" NO. MY FISTULA clotted!"" Is it tender by the site?" NO. MY F-I-S-T-U-L-A CLOT-TED" "Yeah, didn't they tell you to expect that?" Well, yes. but sooner."
Anyway, you get the point...I missed that thrill for quite a while, along with other dialysis habits that came up over the next couple of years.
Thank you for sharing your research, I will be interested in finding out what you ultimately decide for yourself.

Alison Hymes

My fistula failed soon after my transplant. I can still feel the pulse there though. I was told this was common, that healthy blood is harder on the fistula than pre-transplant blood. It worries me because if my transplant fails that will mean a catheter first and than going to my right arm with no room left on my left arm. But no one else seemed at all concerned about it.

Zach

And all transplants last for at least 20 years. Right.

Anna Bennett

My take is that even though I have a functioning kidney, I still have CKD5, and maintaining an existing access is an insurance policy against graft failure. Now, if I take into account cardiac issues, that may weigh my choice in the direction of tying it off. I'm still looking at the data.

Zach if I get 20 years out of my boy kidney, I'd be over the moon.

Alison & Jenny, I'm seeing quite a few people commenting on the net that their access suddenly failed just after their transplant. That makes me wonder even more. What is the correlation? There has to be some empirical data out there. I don't understand the healthy blood theory, simply because I had my fistula with no problems for 18 months before I ever used it. I was dragged kicking and screaming into starting dialysis- I felt that it interfered with my vacation plans. My nephrologist reminded me that being dead is no vacation.

Jenny Patterson

Anna, I was told by UCLA that due to, not just *healthy* blood, but actual icrease in volume and lack of Heparin, that clotting occured in GRAFTS quite quickliy. They had anticipated mine clotting soon after surgery.

ben

This patient has a very high blood pressure during dialysis and after dialysis, with lot of medication for the blood pressure, it seems that this patient's blood pressure is high, on average the BP is 220/99 after the dialysis, during the day BP is about 195/95

This patient is having permcath after using dialysis for many years. My question is tieing the Fistula will it reduce the high blood pressure?

Michelle

10 months after my kidney/pancreas transplant my fistula suddenly STOPPED... no pulse, no thrill, no nothing. It scared me! I was not informed that the fistula might/will fail. In fact, my doctors spoke about having the fistula there in case the transplant failed.

Anyway, when my fistula "died" and I called the ER inquiring about what I should do no one seemed to take the matter urgently. The doctors literally stated that if it didn't hurt there was no need for concern.


I am now looking for any information relating to fistula failure after transplant and what my options are... is it viable for use later if my transplant fails? Should I have it removed/tied off? I have an appointment to see my doctor in January, but until then I will continue to track down some kinda information to help me understand what exactly happened to my fistula and what can be done to save it.

Vickie Brown

I had a kidney transplant 8yrs. ago...during dialysis my fistula never clotted and still hasn't after this long...it's really big and on my lower arm and around my wrist..hence it shows...I've always had lots of quesions about...kinda gotten used to them..but after reading post on here wondering if I should consider removing it....any opions?????

Vickie Brown

Sorry...opinions?..I had a another doctor that I was seeing with my daughter that noticeded it and asked me when I was going to do something about it...I said..I don't know..why?...He said well if you should ever cut it you would bleed to death very fast...wow!...the bump by my wrist is really large and noticable...hardly ever wear sleeves too short...

Bill Peckham

@Vickie Anna is off globe trotting right now ... my opinion is that you'd miss it if you need it. No doubt cutting the fistula would be disastrous, one of a few situations where a tight tourniquet would be a good option, but I don't think that accidently cutting yourself is a likely enough risk to push you into surgery. After all surgery carries its own risks.

John Agar

Bill ... we published on this back in the Australian literature (which, sadly, few read) in 1996.

53. Agar JWM, Jackson TJ, Steinwedel J, Corke C F, Appelbe AF: Arteriovenous access fistulae diminish cardiac reserve, anaerobic threshold and work capacity a case for fistula closure in stable renal transplant recipients. Nephrology (Carlton). 2(6), 387-392, Nov 1996.

Anna Bennett

@Bill, we DO do have internet in London! ; )
I agree with you, I'll just add a paragraph or so...

I did have my fistula removed in June 2010, simply because the anyurism was dramatically beyond repair (words like dangerous were used...). My feelings were that if my fisula were not threatening to blow out, I would have kept it (even considering the cardiac issues - simply because my heart is healthy, and dialysis access was my insurance policy). Sadly, I am now without access, and when my transplant fails, I will be back at square one. I wrote about the removal (excision - it was not possible to tie off my fistula). Here is a link to the excision post: http://ihatedialysis.com/forum/index.php?topic=18735.msg321326#msg321326

Now back to globe trotting..

Bill Peckham

Thanks John. Here's the summary from the abstract:
Summary: A patent arteriovenous fistula (AVF) in stable renal transplant recipients may be viewed as ‘insurance’ against late graft failure and a return to haemodialysis. A patent AVF may, however, exert significant chronic demands on cardiac output (CO) which may in turn adversely affect the prognosis of patients already at risk of cardiac disease. Doppler echocardiography and anaerobic threshold (AT) assessment were used to measure the CO and the work capacity of nine stable renal transplant recipients > 15 months post transplantation who had patent AVF. Cardiac output fell from 6.9 ± 1.48L/min with the AVF open to 6.0 ± 0.97L/min with the AVF closed (P < 0.002). the AT rose from 14.1 ± 5.67 with the AVF open to 16.5 ± 6.72 with the AVF closed (P < 0.002). the work capacity to reach the AT improved from 68.7 ± 30.8 watts with the AVF open to 84.6 ± 38.0 watts with the AVF closed (P < 0.004). This study suggests that a significant and chronic increase in left ventricular work-load accompanies a patent AVF resulting in a markedly reduced exercise efficiency. A patent AVF is ideal where graft survival is doubtful but, where long-term graft function is expected, the adverse effects of AVF patency, a chronic elevation in CO and reduced exercise capacity make a strong case for considering AVF closure. the prognostic advantage for left ventricular function may outweigh AVF preservation in stable renal transplant recipients.

Bill Peckham

Anna I don't think you were ever at square one ;-)

John Agar

Thanks Bill ... nice to see Nephrology quoted here .. it's a rather good (though largely US-unknown) journal ... it is the official journal of the Asia-Pacific Soc Nephrol and of the ANZSN.

I am not sure that closure (of an AVF) is wise for all ... but we did show a significant cardiac performance impact from a patent post-transplant AVF and it's a reasonable coin toss when the expectation past 18 mtgs is a longterm transplant.

We have involved the microsurgical team (who do limb salvages) and they have successfully been vessel reconstructing rather than vessel sacrificing ... why tie off and lose the option if you can reconstruct in such a way that if, down the track and an AVF is again required, the same vessels could be reconfigured into a fistula. Ok .. Have we actually re-made an AVF from a reconstructed set of vessels? ... No. Maybe it's that we have chosen those to reconstruct well ... For none of their grafts have yet failed ... But ... Why not think laterally and reconstructively, not just AVF destructively.

Food for thought

Vickie Brown

I agree with.."If it ain't broke don't fix it!" but are the chances of an anyurism higher or lower with or without it?..my fistula is so large and bulging and very active..all the way up my arm...I'm not concerned about IF my kidney ever failed not being able to use it (fistula) again..I'm not sure I would go through the process again...I'm 61 yrs. old..probably too old for another transplant anyway...what is the difference between having in tied off or removed?..

Anna Bennett

Vicki, you should always speak with your vascular surgeon about it and your transplant team. It was easy for me, my Transplant surgeon placed my fistula and then removed it when it needed to be taken out (I love one stop shopping!).

The difference between a tie off and an excision are just that. My fistula was excised, he opened my arm and removed the majority of the fistula here is a picture from the surgery but I have to warn you, IT IS VERY GRAPHIC http://picasaweb.google.com/lh/photo/98o_TCDwdlTooOVWrPWK68C6GUx6uYDhGzv4GlIRYjg?feat=directlink.

The excision had to be done because the aneurysm was very thin and the fistula was very large. He removed it because there would be less of a chance of thrombosis (which can be very painful post surgery). In a tie off, I have been told that it is a simple procedure where they "Tie Off" the fistula.

Dr. Agar makes a great point of questioning why we need to permanently "tie it off" I wonder if we will ever be in a place where we can have the best of both worlds, a low flow fistula while we are transplanted and then a high flow fistula if our transplants fail. It is a good question to ask the surgical community.

Talk to your doctors. Having your heart checked is a good thing as well. (you can see that there have been studies that correlate left ventricular thickening when a/v fistulas are in place).

I was 42 when I had my transplant,and 44 when I had my fistula removed. It is a highly personal decision, and I wanted to keep my fistula until I was finally told that there was no way that my fistula would outlive my transplant. That was the final decision for me. It was just a matter of time for the aneurysm to blow and the right thing was done by removing it.

John Agar

Just to make my comments clear:

We certainly do leave most AVF untouched and 'buzzing' after transplantation but there ARE those that are huge, unsightly and with very high recirculating blood flow rates which super-add to cardiac output and add additional strain to LV output ... as demonstrated by studies we reported 12-15 years ago in 'Nephrology' that showed lower anaerobic thresholds and reduced exercise capacity when the fistula was 'open' compared to the same tests done when the AVF was occluded temporarily by soft-tourniquet compression. This led us to set some potential criteria where fistula 'ablation' might be considered post-transplantation ... provided (emphasis on provided) the expectation was for long-term good transplant function. By this, we meant that graft function was normal with no rejectio and no CNI-toxicity or transplant glomerulopathy on serial protocol biopsies and that the patient was at least 18-24 months out from tranplantation with a fistula which was causing concern (for the reasons stated above).

We are blessed by having one of the leading microsurgical units in the world at our transplanting hospital (http://www.bobim.org) and we have collaborated with them in successfully trialing vessel reconstruction rather than vessel sacrifice in a small number of patients (4-5 patients, from my recall, over past years) ... ie: the microsurgeons have reconstructed the vein, disconnecting it from the artery and connecting it back into the venous drainage system to preserve ongoing venous (not arterial) flow - as a vein with venous flows and not as a continuing arterialised vein as would be the case in a continuingly patent AVF.

At least in theory, this should allow the vein to be later reattached to the adjacent artery to re-form the AVF should a fistula be needed later on.

We have done several of these. However, what we have NOT done (nor know) is whether truly this reconstructed set of vessels COULD be re-formed into an AVF again ... simply because none of the few patients in whom we have restored vessel integrity have yet had graft failure leading to a need to attempt fistula refashioning. We have tested patency of the reconstructed vein post-operatively and confirmed patency with apparently normal low flow venous flows restored - but that's as far as we have gone.

Vickie Brown

Anna, I saw your surgery pictures. thanks for sharing..I would imagine mine would look something like that...my fistula is huge..looks like a crooked snake up my arm..but regardless of the cosmetic questions...the real concern is the risks of leaving it in..after 8-1/2 years of transplant with NO episodes of rejection..alway great lab results..would it be wise to have it removed..I will talk to Drs. in Houston about it..but they have always left it to me...I've learned more on here about different decisions..I don't want another surgery..I've had 5 hernias surgeries since transplant..have you had any problems in that area?..they were supposed to take it out with last hernia surgery but was in surgery for 8 hrs..they said they didn't have the time left to remove it!..wow..still wondering!..any suggestions are greatly appreciated.. I had Polycystic Kidney disease...they removed both kidneys 2yrs. before transplant..I understand your kidney disease is different..did you have one kidney transplanted?...removal of both of mine cured my disease but I still have cysts on my liver..which doesn't effect the liver like the fuction of the kidneys..probably more info than you wanted to know...got a little carried away...thanks....

Anna Bennett

Hi Vickie, we are both in the same boat. I have PKD too. I chose to keep my native kidneys. (they're huge, but they are mine, all mine!) My liver has cysts as well - PKD is an insidious disease.

I now have three kidneys: My two very large non working native kidneys and my functioning transplant.

For me, the most concerning part was the correlation between LVH (Left Ventricular Hypertrophy)and the existence of a fistula. I had been having regular echocardiograms, so I knew what shape my heart was in. That is why I wanted to risk keeping my fistula.

BUT the aneurysm was the deciding factor. So it was removed. My suggestion would be to make sure that your heart is in the best possible shape and then decide (making sure that the fistula is not affecting it).

The surgery and recovery for my excision was relatively straight forward. Day surgery, I went home with a friend that night and by the next day, I just needed to be careful with my arm as it healed (there is a whole series of healing pictures over on IHD).

You can always e-mail me for more details.(my contact info is listed under bio/contact link just under Bill's picture on the top right)

Anna Bennett

There is more on LVH over at Home Dialysis Central: http://www.homedialysis.org/resources/tom/200704/

Alison

My father is getting ready to start dialysis in March, and just had surgery last week to have a fistula inserted. He is in A LOT of pain still and can not get out of bed or barely walk. He is 73 years old, but does anyone know if this is normal? How long is the recovery? Has anyone every had this surgery? I don't know which sites to turn to for advise. Any help would be greatly appreciated!

Ashley

It took me a good 4 months before my fistula arm was healed. It is very painful, they have to cut half your arm open, and it's going to be even harder for older people. YOu have to move your arm daily, it's just a very painful experience. I would rather have my stomach cut open five times than have my arm cut open. I am almost a year post transplant, I am almost 24, and I have been contemplating lately whether to keep my fistula or not. Yes there is the risk or falling or something cutting it and bleeding to death, I worry about that a lot since I am young. But then I also worry what happens if I have to dialysis in the future because I'm only 23. By the way, do they have to cut your arm back opern to take the fistula out?

Anna Bennett

Ashley,
Speak with your Transplant Surgeon or your Vascular Surgeon (whoever put your fistula in) they will be the best source of information for what to do with your fistula.

There are different ways to "remove" a fistula. Some people choose to keep their fistula after transplant,some have their fistula fail after transplant (it is not uncommon) but if it is decided that the fistula needs intervention, many are "tied off" which is a small incision.

Because of the size of my fistula, (there was a risk of thrombosis) mine had to be excised (cut out) there are graphic pictures of the operation in my comment above - it did end up with two big scars, but my experience was NOT normal. My fistula was fairly unique (extrememly large, with a pesudo anyerism and twisted like a corkscrew).

erick

my av fistula seems not to be working . I feel a pulse but not a pumping sound like before. Just got a kidney transplant. I'm hoping my kidney transplant last for a very long time. What should I do about my av fistula. Has this happen to anybody. I actually has sexual intercourse with my wife 2 weeks after my kidney transplant. The next morning I notice it wasn't working like it use too. Has this happen to anybody?

Seth McKinney

Two weeks ago my fistula quit working. No bruit, no thrill, nothing. I went to the ER and was told it's "no big deal" since I've already been transplanted. Every DR I spoke with was not concerned and stated they usually leave them in even when they clot. This concerned me. My vasc surgeon finally came back from vacation and I am scheduled to have the anastamosis and a small section just proximal to it removed on tuesday. My transplant surgeon is all up in arms trying to talk me out of it, saying there's no need and the risk of infection in post transplant patients is too great. I need some clarity before proceeding with surgery. This is by far the hardest decision I've ever made. I was told they only have about 48 hour window to perform a fistulagram once a fistula has clotted in order to salvage it, I'm well past that. With that being said, my fistula is completely useless should my kidney fail and I will have to have a new one placed in that event.I'm 25 and don't want to have the visible bulge on my arm forever. What should I do?

Jason Alexander

I am post kidney transplant of16months, I had a AVF placed about 2 years prior to my KT and never had to use my AVF (Dialysis was never needed). All my blood work and test results have been favorable since transplant. My surgeon has recommended tying off/removal of my AVF, but my Nephrologist suggest leaving it alone. I haven't noticed any major problems besides my fingers curling up beyond control and cramping, or my arm tingling sometimes as if it was going to sleep. I am currently scheduled to have my KT surgeon repair an umbilical hernia in September, and he also wants to "tie off/remove" my AVF while I am under general anesthesia. After reading some of the above post, some being doctor terms that I do not understand, I am getting concerned about the my AVF decision. I will ask him about reconstruction vs sacrificing, and hoefully that helps determine weather to proceed or not.

Michael Gehrman

How common is pain in a fistula? My spouse received a transplant a year ago without having to use her fistula, but is experiencing significant (and increasing) discomfort and pain in the arm. Will removal address this problem?

micah

im curious I have fistula on my left arm and I had kidney transplant 5 years ago and it still bother me is that my hand and arm feel numb and tickle where my fistula is ! does that happen to anyone and is that normal ??? I have plan go see fistula doctor to check it out cuz lot of ER keep saying it normal it no big deal and I was like no way I want to check it out so I just curious it that normal or have you all feel that way when your arm numb sore pain or tickles after transplant ??

sam

Interesting comments that I'm reading here. Neither my nephrologist nor my vascular surgeon ever mentioned that there are downsides to leaving my fistula in (I'm 3 1/2 years post transplant). I'm glad now that I found this message board. I was considering talking to the vascular surgeon about undoing my fistula because I hate the way it looks, plus it still makes it a little difficult to fall asleep with it's pulsing on the pillow. After reading the comments here, I realize I definitely need to discuss the pros and cons with him.

emma

My boyfriend has just had his fistula out a few days ago and he's concerned that he still looks like he's got one as it's quite ballooned & bumpy. It isnt sore or painful, and I have tried to reassure him in time it will settle but he is thinking he has gone through surgery for no reason as it still looks as though he has a fistula in (only smaller)
Can anyone advise?

troy w.

How long does it take to heal after an aneurism fistula is fix by operation surgery? If anyone did this procedure i would like to know the outcome. Better, painful? Thank you

Ellen Greer

I had my kidney transplant on 06/26/13. Everything is doing fine. I had my fistula tied off about 6 month ago, because I had to much blood running through my fistula and heart. my question is, can the nurses or I now take my blood pressure using my left arm, or is it still better not to use this arm for taking blood pressure or giving blood for testing? Ellen

Clarissa McIntosh

I have a fistula in my right arm that is hurting and it feels like my arm is going to fall off.
can anyone explain why this is? I had my transplant in 2008 and my fistula was tied a year after

William

Hello All,
I am just past my 4 year anniversary post transplant. I was started on emergency dialysis in 2010 due to unknown reasons of kidney failure. The doctors put in a neck catheter for immediate dialysis and eventually a chest catheter before leaving the hospital after 2 weeks. After having dialysis with the chest catheter for some time, the local dialysis team recommended I get a fistula put in since the chest catheters were considered dangerous. Once the fistula was healed and ready for use, it was blown the first 2 times it was used. My nephrologist recommended I go with PD since I was responsible enough to do it, alert, and very proactive about dialysis.
In 2012 I was called up for transplant and had no thought of fistula removal. My fistula recently has started to grow in size and I have had frequent cramping in left arm for a couple months, but it has been on the outside of my arm, opposite the fistula. It gets to the point, at times, I have to get my arm warm with hot compresses to get it to settle and stop being painful. My fistula becomes quite pronounced and the "buzzing" is very prominent.
At this time I have been contemplating options of reversing fistula for pain relief.
Looking for options/opinions/advice.

Albert Villamar

how do we keep the fistula lumps from getting so large/
iS THERE ANY THING WE CAN APPLY ON IT TO KEEP IT FROM GETTING SO LARGE AND UGLY?

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