Patient Experience

Videos: Patient Experience

Dr. John [1]

As a family physician, John has been living with ATTR cardiomyopathy for the past three years; he was diagnosed around age 62

Paul [2]

Diagnosed in 2015, Paul describes how he ignored the initial symptoms and the rapid onset of ATTR-CM

Pfizer Canada Youtube Channel. https://www.youtube.com/watch?v=2seyBOlLVTE
UK ATTR Amyloidosis Patients Association. https://vimeo.com/624305214.

Patient Physical Experience

Patients may report symptoms directly related to the disease’s impact on the heart, e.g., shortness of breath, atrial fibrillation, and heart failure

SHORTNESS OF BREATH

“Walking down to the barn and back up to the house, which is probably 60 meters down here on 60 meters uphill coming back to the house. There's times where I've had to stop halfway and catch my breath.” [7]

ATRIAL FIBRILLATION

“He had a hard time catching his breath. Visits to the cardiologist revealed atrial fibrillation, an irregular heartbeat that can be caused by ATTR. Doctors also drained excess fluid from his body, relieving uncomfortable pressure.” [2]

HEART FAILURE

“In 2010, I went to the emergency room because I was having difficulty breathing. I was told for the second time that I have congestive heart failure. Then in 2015, my breathing problems recurred.“ [3]

HEART PALPITATIONS

“He (ATTRwt Patient) was in the middle of a step aerobics class when he began experiencing the first signs of trouble: heart palpitations and dizziness.” [4]

Many ATTRwt-CM patients develop carpal tunnel syndrome, lumbar stenosis, etc., several years prior to heart manifestations

Carpal Tunnel Syndrome

“I did have bilateral carpal tunnel surgery about 20 years ago. I think about if this disease could have been starting way back then.” [1]

“Over the ensuing years, I had many different medical problems. It started in 2005 when I had nerve issues in my hands, specifically carpal tunnel syndrome and trigger finger.” [5]

Fluid Retention

“He first suspected something was wrong during a surprise anniversary party for him and his wife. He had recently gained 40 pounds, seemingly from fluid retention.” [2]

RUPTURED BICEPS TENDON AND LUMBAR STENOSIS

“I’m 71 years old. For more than a decade, I experienced all the early indicators of ATTR-CM: bilateral carpal tunnel syndrome, ruptured biceps tendon, and lumbar stenosis.” [6]

Symptoms continue to progress but at variable rates...

“I’d attributed the decline in physical performance to aging, but now I think it was the early signs of my cardiac amyloidosis. My Mayo Clinic cardiologist, Martha Grogan, MD, told me that my overall physical fitness and lean body mass had helped mask the symptoms.” [10]

“A nasty quiet disease that creeps up on you. when you suddenly realize that what was an annoyance is the next stage in your journey and it shocks you that it has been there so long.” [8]

“I HAD NO IDEA THAT I WAS ILL. I had recently had a knee replacement. I was recovering from that, doing therapy. I had some swelling in my legs, bilateral edema, but on February 17th, I HAD A STROKE.” [11].

“When I received the CHF diagnosis in 2007, I had been visiting an urgent care facility for vertigo - I woke up one morning and the world was spinning. The electrocardiogram machine tracings looked like I was having a heart attack, so they moved me to the emergency room, and hospitalized me for three days while they did a million heart checks - and that’s when I was diagnosed with CHF.” [9]

Patients are likely unaware of ATTRwt-CM, and they often ignore the initial manifestations

“It wasn’t until December 2018 that I got my ATTRwt diagnosis, eleven years after the first symptoms. There were so many missed signs. I’ll take some of the blame: I’m sure I never told my cardiologists that I’d had bilateral CTS. So, several good, or maybe great, cardiologists missed the diagnosis.” [12]

Patients may pass off subtler early signs of ATTRwt-CM as minor annoyances or the effects of aging

“Ivan, a longtime physician, mistook the initial signs of ATTR for benign effects of aging. But after feeling out of breath from routine activities such as climbing stairs, Ivan suspected something more serious was going on.” [13]

“I remember thinking I'm going up hills and I'm feeling more out of breath, but I put that down to my age.” [14]

Patient Emotional Experience

Initial denial and disregard can turn to confusion and worry

DISREGARD

“In the Spring of 2019, as I was trying to spread fertilizer on our lawn, I could only walk a few minutes before becoming very tired. At about that same time, I was experiencing shortness of breath on little exertion. My wife made my appointment with my PCP as I insisted it was nothing and it would go away.” [3]

CONFUSED

“Because things that I normally would do, I just took for granted, like just going out for a walk, it got to the place where I would just be totally out of breath. And so that made it difficult. It is just the small things that I used to be able to do that I can’t.” [2]

“During the latter part of my career, I started having symptoms of an illness that became so severe, I couldn’t work anymore. At the time, I didn’t know what was making me so sick.” [4]

Worried

“My wife looks back and says she was worried, justifiably, about the bilateral edema. But other than that, there were no warnings.” [1]

“[During one race,] I took off and saw a guy up ahead and thought, ‘I’m going to try and keep up with him’. I came to the first hill and bonked out. That was a struggle, and it shouldn’t be—races are hard, but not that hard.” [5]

And finally patients realize something is seriously wrong

Fear

“I started to work out and I started to feel really tired and heart palpitations, dizziness. And it got to a point where I had to stop, and I said, ‘SOMETHING'S WRONG.’” [2]

“As I laid down, I couldn’t breathe. So I sat up again. I said to my wife, ‘I can’t breathe.’ So we were most concerned, so she phoned up. An ambulance came and picked me up, took me to [the hospital].” [6]

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