Videos: Patient Experience

Two patients describe the emotional reaction they had when receiving the diagnosis
Dr. John [1]
“He [my doctor] told me that it was a progressive, ultimately fatal condition and that I might have five years to live, and that I might need a heart or liver transplant to save my life. And like any patient who is told a bad diagnosis, the feeling is ‘why me?’”
Chip [2]
“It's just like someone kicked me in the head said you can't do that anymore, and that's probably emotional struggle more so than the physical struggle because I understand I can't do it.”
  1. Pfizer Canada Youtube Channel. https://www.youtube.com/watch?v=2seyBOlLVTE
  2. New Zealand Amyloidosis Patients Association NZAPA. https://www.youtube.com/watch?v=UMIxcaamdg4.

Patient Physical Experience

Multiple HCPs may be involved, and patients may be exposed to a long series of tests before an ATTRwt-CM diagnosis
PATIENTS REPORT A VARIETY OF TESTS—WITH BIOPSY DESCRIBED AS THE CONFIRMATORY TEST
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“The initial tests for amyloidosis came back negative, and I had my doubts. All that was left was a heart biopsy, and I was close to refusing to do it. But we went ahead and, sure enough, the biopsy came back positive for wild-type TTR.” amyloidosis [2]
“To identify the cause of Art’s condition, his doctors took tissue biopsies and identified TTR amyloid deposits.” [3]
Other Tests
ECHOCARDIOGRAM
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“After an echocardiogram, which showed an ejection fraction of 40%, this cardiologist had me do a cardiac MRI and a pyrophosphate nuclear scan, which he suspected right from the start was going to confirm that I had transthyretin amyloidosis."[1]
ANGIOGRAM
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“The doctor ordered an ECHO, then an angiogram, nuclear stress, and other tests. At that point, I was diagnosed with wild-type amyloidosis.” [4]
PATIENTS MAY HAVE EXPERIENCED SIGNIFICANT DECLINE BY THE TIME OF DIAGNOSIS
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“I had a lot of trouble sleeping at night due to my persistent cough and other CHF symptoms. It got to the point where I was so tired that it became debilitating. I JUST COULDN’T GET GOING IN THE MORNING. Next came problems with sciatica—a nerve condition that caused pain, weakness, numbness, and tingling that started in the back of my thigh and went all the way down to the sole of the foot. I was having so much trouble walking that I had to buy a mobility scooter to get around.”[5]
“Things continued to deteriorate for me during the winter of 2017. I took off one day skiing with my wife and I couldn’t keep up with her. I COULDN’T BREATHE. I had a race three days later and nearly passed out on the course.” [6]
“I came back, changed my GP. And then about three years ago, I talked to her about my breathlessness. I can walk up very slowly. I stop every 20 meters, a set of stairs. I'm gasping at the end flight of stairs, no matter how slowly I'll go.” [7]

  1. https://www.youtube.com/watch?v=2seyBOlLVTE​

  2. https://amyloidosis.org/cardiac-amyloidosis-needs-to-be-on-the-decision-tree/​

  3. https://www.eidostx.com/arts-story/​

  4. https://amyloidosis.org/where-will-this-attrwt-amyloidosis-journey-take-me/​

  5. https://www.pfizer.com/news/hot-topics/my_journey_to_diagnosis_an_attr_cm_patient_s_story​

  6. https://healthcare.utah.edu/patient-stories/stories/groth.php​

  7. https://www.youtube.com/watch?v=UMIxcaamdg4

Many patients have no knowledge of amyloidosis—and even HCPs may lack relevant experience
MANY PATIENTS HAVE NEVER EVEN HEARD OF AMYLOIDOSIS, LET ALONE ATTR
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“They did a scan and it was positive for amyloidosis. That's the first time I ever heard of the term, amyloidosis. I remember sitting in the office both of us, and he said that I have it in my heart. That was tough. That was tough.” [1]
“They took a heart biopsy and it was still undetermined exactly what was going on and they sent it to the Mayo Clinic. After about two or three weeks, I got it back. And it said that I had a form of amyloidosis. I'd never heard of amyloidosis or anything regarding that.” [1]
“The cardiologist in the hospital, he said, ‘I do believe that your stroke is a result of the deposition of protein on your heart, which has thickened the walls of your heart. And that is a rogue protein called amyloid. And we call the condition amyloidosis.’ I'd never heard the word amyloid and certainly not amyloidosis.” [2]
. . . AND HCPS MAY NOT PROVIDE MEANINGFUL INFORMATION
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“His cardiologist specializes in Amyloidosis. But they can’t tell us how much it has progressed / how much protein is in his heart. They diagnosed him through bloodwork. Is it normal for a doctor to say we don’t know how far along it is? His nausea is horrible and he’s so weak.” [5] – ATTRwt caregiver
“When I had a follow-up appointment with my cardiologist she said, ‘I KNOW NOTHING ABOUT THIS DISEASE, you will have to go someplace else.’ Doctors need a lot more education on this disease as few have much knowledge of it.” [3]
“I have WT cardio amyloidosis. It caused my feet to swell with fluid. I was in the hospital for 6 days and they treated it but my belly looks like I’m 6 months pregnant and I’m a guy. They say it is not water, fluid, or poop. All the doctors are scratching their heads.” [4]

Patient Emotional Experience

Receiving an ATTRwt-CM diagnosis is a devastating, overwhelming event
Fear & Loneliness
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“It was VERY LONELY and SCARY times because my body was turning south on me. I had this pain and discomfort. I did feel alone. My whole life I've always thought I'd live into my nineties, and never questioned that and never doubted that. And all of a sudden, BAM!” [1]
ANGER / WHY ME?
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“He told me that it was a progressive, ultimately fatal condition, that I might have five years to live and that I might need a heart or liver transplant to save my life. Like any patient who's told a bad diagnosis, the feeling is, WHY ME?” [2]
Devastation/ Hopelessness
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“It's just like someone kicked me in the head said you can't do that anymore, and that's probably emotional struggle more so than the physical struggle because I understand I can't do it.” [3]
“My husband is 72 and recently diagnosed. What can I do to support him? He is anxious, depressed! THIS ISN’T LIKE HIM AT ALL.” [5]
“This is something you don’t sign up for, and it’s not easy.” [6]
RELIEF?
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“It’s hard for me to describe what I felt after receiving a diagnosis of ATTR-CM, a form of amyloidosis. I know it sounds odd to look at being diagnosed with a potentially fatal disease that way, but I was actually RELIEVED TO FINALLY KNOW what was causing all of my different symptoms for over several years.” [7]
SHOCK
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“WOW, that shook me and my mind went crazy as I thought of all the what-ifs ahead. Where did this come from? When did it start? How long do I have to live? On and on my mind went. Friends tell me that they knew it was the wild type as I am the wild type, not true. I was 78 when diagnosed, so HOW WILD COULD I BE?” [4]