Living with cardiac amyloidosis
Hearing that you have a critical heart condition is never easy. Diagnosis sometimes comes after frequent doctors’ visits and medical examinations that patients endure. Keith Dares, from Nova Scotia in eastern Canada, is one such patient.
“No cure, it’s fatal and with a maximum life expectancy of five years was a lot to take in,” said Keith.
Diagnosed at 55 years of age with cardiac amyloidosis wild-type (ATTRwt) which is age-related as opposed to the hereditary type, Keith was in understandable shock. TTR is a transport protein that naturally circulates in the blood but when unstable, it can create amyloid fibrils that build up and cause muscle stiffening.
“While I was recovering from orthopaedic surgery in October 2014, I had some cardiac symptoms which I knew weren’t associated with the surgery, so I went to the emergency room, chest pounding. Until that day, my only issue was borderline blood pressure, and it was being monitored. Today was different as I was extremely short of breath and fatigued.”
Expecting doctors to do a heart workup and send him on his way, Keith was surprised to be admitted to the cardiac unit for 11 days of diagnostics and investigation.
“All they could tell me was that I had heart failure, but they couldn’t tell me why, they couldn’t come up with a cause.”
Among the battery of tests, a cardiac MRI revealed patchy areas of the heart, a ‘red flag’ for amyloidosis, and the basis for a biopsy. January 2015 was a difficult start as Keith’s diagnosis was confirmed: cardiac amyloidosis.
“Since my diagnosis, I have done a lot of research, exchanging with patients in Canada and across the globe. I learned that it often took three to five years and involve as many as eight referrals to specialists to arrive at a diagnosis. One complicating factor is that amyloidosis can affect different organs, not just the heart, and symptoms can suggest diseases not necessarily caused by it. Then there’s the time to schedule follow-up exams, wait for results, and have subsequent appointments with doctors or a medical team.”
Being an inquisitive person, and despite the very good medical care Keith received, he needed more information and ongoing support. His own background in health care motivated him to search for answers through contacts, literature, and connection. He is now active in the Amyloidosis Alliance of 19 member countries including the Canadian Amyloidosis Support Group. A large but not densely populated country means that patients in Canada are often geographically spread. The group is both an information resource and a support chain connecting patients and families, offering comfort and company because empathy and encouragement are just a text, a phone call, or an email away.
“Our Alliance is driven to raise global awareness of amyloidosis. Providing support in Canada, we want the conversation to include other countries that might not have a support network to turn to. We’re open to engaging with the medical, scientific and research communities. And we exchange with the pharmaceutical companies about finding the right treatment and getting it out there, especially into the hands of people who need it at a reasonable cost.”
Keith stresses awareness which can sound like a basic thing and yet is so vital to the improvements in diagnosis and care that can follow.
“Anyone who knows anything about amyloidosis should spread the word to others. Visibility, prompt diagnosis, treatment access and options are pressing priorities and for this, we need to ensure that amyloidosis is more readily considered as a potential differential diagnosis of heart failure.”
WHF highlights the ‘Heart Heroes’ among us – they are the cardiologists, healthcare professionals, policy-makers, patients and their family members and friends battling, treating and beating heart disease. We are honoured to hear and share their stories as they help us spread awareness and hope.
In these personal testimonials, any examples of diagnoses, care, treatment, medical processes, or recommendations are provided independently of WHF’s policy or scientific and technical outputs.