Stories of fistula or graft dysfunction

[Daniel G]

Does anyone have stories about fistula or graft dysfunction they can share?

I work at a small biotechnology startup that is testing an investigational drug (a drug that is not yet approved by the US FDA) that may inhibit the formation of stenosis in fistulas and grafts, thereby reducing the need for interventional procedures such as angioplasty. The drug is undergoing early studies and is still years away from possible FDA approval.

We want to better understand how fistula/graft dysfunction affects patients and their families so we can convey the patient need to our employees, investors and partners. In short, we're looking for the "human" side of this clinical problem. Some of the specific questions we're looking to answer:

* How many interventional procedures (e.g., angioplasty, thrombectomy, revision, replacement) have you undergone for fistula/graft failure, and over what time period?
* How does fistula/graft dysfunction impact dialysis?
* How do you feel when you're told that your fistula/graft is failing and a procedure is required?
* How do interventional procedures impact your life? Is the referral process "easy"? Is the procedure painful?
* How do you cope with fistula/graft dysfunction?
* Is undergoing an intervention to restore fistula/graft patency a burden to you or your family/caregiver? In what ways?
* How big of a problem is fistula/graft dysfunction compared to other aspects of dialysis?

Any insights would be greatly appreciated. Your feedback will be kept anonymous.

Thanks in advance for sharing your experiences.

[sullidog]

Hi,
I have a graft. One thing I'm looking to a fix for is getting rid of scar tissue that has formed into the skin and around the graft, sure surgeons will go in and clean it out if inside the graft, but around the graft they don't consider that feesable because they say either the scarring has gotten so bad it's impossible to clean it out of the skin, and a claim that was also made to me is that the insision that they make to clean up the scarring well that will grow new scar tissue so they don't see a purpose in doing it. There's got to be a drug out there that can possibly help loosing some of this up, like for example the middle of my graft is complete scar tissue, and this makes for painful canulation to unless you know the graft very well no canulation at all to no dialysis for that day. Techs will only try a certain number of times before giving up rather the patient wants to give up or not.
* How many interventional procedures (e.g., angioplasty, thrombectomy, revision, replacement) have you undergone for fistula/graft failure, and over what time period? I have one graft replacement 2 years ago and have had to get an angio plasty on this current one about every 6 months, I've had it clot about 3 times on me in the past 2 years that I've had it.
* How does fistula/graft dysfunction impact dialysis? It could lead to no dialysis at all making the patient wait longer for treatment.
* How do you feel when you're told that your fistula/graft is failing and a procedure is required? Some times it frustrates me but handle it pretty well.
* How do interventional procedures impact your life? Is the referral process "easy"? Is the procedure painful? It puts you down for one day. As far as pain goes it depends on the surgeon/radiologist, rather they give you enough local/enough relaxation, I've found some use only local while others will use a minor sedative such as versaid along with local. I find that if both is used I can handle the procedure much better. I however hate the rotorootering for some reason that machine makes me sick, however a thrombectomy I do fine with.
* How do you cope with fistula/graft dysfunction? Pretty well but it is frustrating.
* Is undergoing an intervention to restore fistula/graft patency a burden to you or your family/caregiver? In what ways? It makes me miss work but that's about it.
* How big of a problem is fistula/graft dysfunction compared to other aspects of dialysis? To me, minor.

[Daniel G]

Thanks for the reply. Very interesting information about scarring. Do you know what causes the scarring? The cannulations? The graft surgery (placement)?

[amanda100wilson]

* How many interventional procedures (e.g., angioplasty, thrombectomy, revision, replacement) have you undergone for fistula/graft failure, and over what time period?
I have had one angiogram soon after starting to use fistula.  I think that stenosis formed early on after fistula formation.

* How does fistula/graft dysfunction impact dialysis?
May prevent dialysis and require need for new fistula.

* How do you feel when you're told that your fistula/graft is failing and a procedure is required?
Anxious and afraid that fistula may fail, necessitating need to make new fistula elsewhere.  Since it took a lot to get a working fistula in the first place, there is the fear that they may run out of access locations.

* How do interventional procedures impact your life? Is the referral process "easy"? Is the procedure painful?
It is yet another day spent on medical issues, but the procedure wasn't painful as I had conscious sedation.

* How do you cope with fistula/graft dysfunction?
Like everything else.  I deal with it because I have no choice.

* Is undergoing an intervention to restore fistula/graft patency a burden to you or your family/caregiver? In what ways?
My husband has to take time from work to take me to and from the hospital.

* How big of a problem is fistula/graft dysfunction compared to other aspects of dialysis?

[sullidog]

yes scarring can be caused by repeated canulations and procedures, techs aren't suppose to stick a graft like I have in the same spot over and over, but most techs don't seem to follow that rule for whatever reason, they just seem to find spots that are good for them, and keep sticking them which in return has caused a lot of my scarring even if a patient like myself has brought this to their concern.

[Gerald Lively]

I have had six fistula surgeries, two of them were angioplasties.  Still doesn’t work.  I look like Frankenstein.

What to do about dysfunctional fistulas?  Lay on the floor, on your back then kick and scream while waving your hands and feet around as much as possible.  While that doesn’t help with any fistula problem that I know of, it is good exercise.

Although I don’t have to do dialysis anymore, there remains the question of that fistula; do I want to go through one more surgery or not?  My Neph says I should do it if I ever have a relapse.  I don’t know ‘bout that.   For one thing, he laughs at my jokes; can you trust a man that does that?

[Whamo]

I thought my fistula was doing fine, but I have learned my flow rate is too slow.  They are gradually weaning me on bigger needles. 

[kitkatz]

* How many interventional procedures (e.g., angioplasty, thrombectomy, revision, replacement) have you undergone for fistula/graft failure, and over what time period?
First year of dialysis I had a graft in lower left arm. Clotted nine times.  My arem looks like a railroad ran through it. Replaced with a new graft in upper left arm. Lasted me ten, yes TEN, years! Had little stents put in it once.
Had an infection in the graft.  Surgeon took it all the way out of my arm, Then placed a fistula.  Took tw surgeries to put anew working fistula in over six month time span. I have had one clot with this fistula fixed.  Two years now with it.

* How does fistula/graft dysfunction impact dialysis?
Oh yes.  Catheters suck rocks to have to have them in the chest and dialysis is not as good with them.  Plus time off of work for surgeries and stuff.

* How do you feel when you're told that your fistula/graft is failing and a procedure is required?
 I feel like crying and have cried. Plus scared about the pain involved.

* How do interventional procedures impact your life? Is the referral process "easy"? Is the procedure painful?
Hospital stays are never easy. Plus the possibility of infection every time they do a procedure. Kaiser referrals for it come through the ER so it takes time.


* How do you cope with fistula/graft dysfunction?
LOTS of patience and a morbid sense of humor.  I kept telling my surgeon I was attached the my graft!

* Is undergoing an intervention to restore fistula/graft patency a burden to you or your family/caregiver? In what ways?
Everyone involved.  Worry by care giver- hubby every time I go in.  Time taken from our lives.  More pain for me and recovery time.  Plus time off from work.

* How big of a problem is fistula/graft dysfunction compared to other aspects of dialysis?
It is probably the biggest pain in the ass of all of the dialysis problems I have encountered!

[gothiclovemonkey]

I have a fistula, and it has been... an adventure?
I had originally had one placed in the lower arm, but 2 days later they did the upper arm as the bottom didnt work.
I have had so many proceedures/sugeries on this darn thing ive lost count, last count i recall was about 23. ive only had it since 2007. most of the proceedures happened in 2007/8.
It is big and uuuugly, but it keeps me alive so i have grown rather fond of it.
The other day the tech mentioned that they need to stop sticking me where they do because its grown weak and looks unhealthy. usually when they attempt to stick me elsewhere i am infultrated. thats never any fun.
My fistula has grown into a cork screw or pigtail shape. which makes it kind of hard stick.
there really has to be a better way to do this, i mean, caths arent good due to risk of infection (although makes a very interesting conversational peice! but so does the fistula -- had someone the other day ask me if i had one of those "implants some people are getting as a fashion statement" LOL)
i cant move my arm during the 4 hrs, or i risk infiltration, and needles do tend to hurt. I keep asking the nurses and techs if they could do it magically, they cant... lol

[Daniel G]

Thanks for all of the feedback! Very enlightening.

I'm interested in any additional feedback on the burden of fistula/graft dysfunction and surgeries/angioplasties on patients, families and caregivers.  Specifically, Feel free to share stories about the logistical burdens (traveling and waiting for procedures, missing work, etc.) and the emotional impact.

[gothiclovemonkey]

idk about everyone else, but for me the worst part about having all those surgeries would be not being able to hold my son!