How does fistula dysfunction affect you?

[Daniel G]

Please provide insights into how fistula dysfunction affects you.

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 need to better understand how fistula (or graft) dysfunction affects patients and their families. We're looking for the "human" side of this clinical problem. For example, how does dialysis change as your fistula worsens? How do you feel when you're told that you need to go see a surgeon/interventionalist for a procedure (such as angioplasty)? What are the logistical issues of having an intervention? Does fistula dysfunction affect your family or caregiver? How valuable would it be if you didn't have to have these interventions to restore patency?

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

Thanks in advance for sharing your experiences.

[Whamo]

My fistula was slow to develop at first, but it's been getting big.  My nurses tell me mine is big, while the others stay small.  (The girls used to say that 20 years ago).    I attribute my progress to doing a lot of walking -- getting the circulation moving.  I'm almost ready for a buttonhole. 

[amanda100wilson]

It's yet another fear that it will be an insurmountable change, since the issues that we face in general are ongoing.  we are never able to feel 'safe' with our health, really just waiting for the next thing to happen.  I know that an angioplasty is not good for veins, but when a stenosis forms, this is what it is needed.  I feel like I am walking a tightrope the whole time.