Mother-of-three, Tracy Cockayne, shares her experience of how a ground-breaking fistula procedure gave her a new lease of life after suffering kidney failure after childbirth.
After giving birth prematurely to her youngest son, Tracy Cockayne suffered a post-partum haemorrhage and multiple organ failure.
Finding herself in the Intensive Care Unit at the Queen Elizabeth Hospital in Birmingham with no kidney function, she was placed on dialysis.
It was initially conducted with a line in her neck and later her chest before she was advised to have a traditional arm fistula to facilitate dialysis three times a week.
For Tracy this was a major issue and, because of fears over scarring and disfigurement, she opted against the procedure.
Understanding your options
Tracy, who was being treated at the Queen Elizabeth Hospital in Birmingham, knew a chest line was not a long-term option. However, she still declined an arm fistula.
“Being a female, there is a certain level of vanity,” she explains. “Fistulas are bulbous, they are ugly and I didn’t want people to stare at them.”
Even when her dialysis nurse Karen visited her on the dialysis unit and discussed the options and consequences, Tracy resisted even though she knew it was putting her life at risk.
But there was a new twist when Karen asked if Tracy may be interested in participating in a trial for the WavelinQ™ EndoAVF system.
“When she told me there would not be a scar on my arm, I agreed because this was an offer that alleviated all those fears,” she says.
Minimally invasive procedure
Having been assessed as a good candidate for the procedure, it was carried out in December 2018 and went well.
“I was conscious throughout it, I have zero scarring and I had a workable fistula,” says Tracy, who lives in the Sandwell area of the West Midlands.
I only had two days off work. It has not impaired me in any way to go about normal life, it is not unsightly, and to be fair it saved my mental health.
Endo AVF (endovascular AV fistula) is a minimally invasive technique. Whereas a traditional fistula involves an incision and stitching to connect two veins, Endo AF is a dual catheter system and works with a wire advanced through needles to the selected fistula site.
Magnets precisely align the adjacent vessels and a radio frequency pulse discharge creates a connection between the artery and vein.
Improving patient comfort
The procedure has shown a number of advantages over traditional fistulas in that it is more comfortable for the patient, with fewer adverse reactions and no scarring.
Tracy says: “I only had two days off work. It has not impaired me in any way to go about normal life, it is not unsightly, and to be fair it saved my mental health.”
“People do not believe I have a fistula because they cannot see the scar, but the fistula buzzes and they know I have one. For me it saved my life because I did not see a future with a standard fistula and I did not have a plan B,” she says.
Tracy also emphasises the importance of speaking to her counsellor and kidney therapist, who helped her make clear decisions and supported her from a mental health perspective.
“It is really difficult when you are in that position,” she continues, “but my fistula has given me a future, it is so intrinsically linked with mental health. I feel the buzz in my arm that tells me as soon as I need dialysis that I have an access that is workable, is strong, and will save my life. It is like having an insurance policy in your arm.”
Tracy now feels that dialysis fits in with her life, rather than dictates it.
“I can go on holiday, swim, and I can still wear short-sleeved shirts,” she says. “It is liberating, I am not inhibited by my kidney failure and my fistula is a big part of that. The conversation with Karen over Endo AVF was a pivotal moment in my journey, that was the point where I was more willing to engage with the process and felt I had a choice.”
She would like to see the procedure become more widely available for dialysis patients.