Lenetta Lewin had her life turned upside down by a rare condition called Atypical Hemolytic Uremic Syndrome (AHUS), but thanks to the care and expertise of PA Hospital staff she is still here today for her family.
AHUS is a rare disease that causes tiny blood clots to form in the small vessels of the body. These blood clots can block blood flow to vital organs. In Lenetta’s case it caused major problems for her heart and her kidneys and her liver.
This alongside other health issues would lead the wife and mother of three children along a protracted health struggle of more than a decade, resulting in multiple open-heart surgeries and a kidney transplant as well as diagnoses of cardiomyopathy and endocarditis along the journey.
She now happily says currently she’s feeling the best she has felt in years thanks to life-saving valve replacement surgery on her heart. Surgery, which was incredibly performed by keyhole, by PA Hospital cardiac surgeon Associate Professor (A/Prof) Anthony Camiglia.
A mitral valve that had already been replaced in a previous open-heart surgery was failing and Lenetta’s last hope was world-first mitral valve keyhole surgery to install a replacement. Prior to the surgery, and the toe echocardiogram at the PA that discovered her prosthetic valve was blocked, Lenetta’s condition was so dire, she struggled to even breath due to fluid building up in her chest.
“It was trans catheter keyhole surgery because they couldn't do anymore open-heart surgeries on me because I wouldn’t have made it off the table. That's where Dr Camiglia stepped in,” Lenetta said.
“I was literally dying; I think I had six weeks to live. I was already getting ready to talk about palliative care and that sort of thing. And then bam, they did this tow echo test, and they found the problem, the valve was completely blocked, it was in complete stenosis. That’s when Anthony came and spoke with me about the possibility of keyhole surgery.
“I just thought, oh my goodness. Can we do this? It was a big call. I knew all the risks and that it was something that he was attempting for the first time. But what was my choice? I had to go for it,” she said.
Now months on from her surgery, Lenetta, who still undergoes regular dialysis at the PA each week, is incredibly grateful to both the cardiac and renal teams at the PA. She welcomed news the PA Research Foundation is working alongside A/Prof Camiglia to set up a Heart and Lung Research Centre so that more patients can benefit from surgical trials like the one she credits with saving her life.
“I’ve had health issues for 12 to 13 years now, this is the best I’ve felt in 10 years. I’ve lost the transplanted kidney now because the heart got so bad my transplant failed but that was my choice because we had to find out what was going wrong with my heart and fix it,” Lenetta said.
“It’s great that they are trying to help even more people like me, absolutely. The PA has basically in almost every category saved my life at least once.”
If you’d like to support cardiac research trials like the surgery that saved Lenetta’s life you can do so by making the Foundation your place to give here.
