2. Cardiomyopathy
3. Interviews

Cheri's interview

How did all start?

Got screened when my youngest brother was diagnosed and had a heart pump installed in the same week. They missed him because they assumed he was too young to have heart failure.

Do you already have a diagnosis? How long did it take you to get it?

I do. Took a few months, with scheduling and all that. Pre-covid.

For what medical specialties have you been treated? What has been the most useful specialty for your?

Movement neurologist (more harmful than helpful), GI, cardiologist, ob/gyn, nutritionists, physicist, pain specialist, orthopedic specialist, psychologist and psychiatrist. The psych drs have been most useful; I have been very much mistreated or ignored because I'm fat and have too many meds - yet I can't get drs to take me off them. I've been slowly getting rid of drugs that seem wasteful. Therapy is helping me manage my fear, panic, hopelessness, and even rage after years of trying so hard only to find myself in the medical-silo trap.

What has been the most useful thing for you so far?

Therapy. Ketamine may be helping. I have to figure out how to live while my body suffers for lack of good medical care.

What have been your biggest difficulties?

Trying to build a team of doctors. Thete are no patient coordinators or advocates, and doing it myself has been very stressful. Articles that day to interview possible doctors are unrealistic and, frankly, insulting. They don't do intetviews.

How has your social and family environment reacted? Have your social or family relationships changed?

I have lost my social circle. My immediate family has shrunk after mom abd brother died from heart failure. It has put a strain on my marriage. I am very lonely.

What things have you stopped doing?

Reading, driving, writing, yardwork, walks, groceries, household tasks.

What do you think about the future?

It's bleak and I don't want to live like this.

So far, which years have been the best years in your life? What have you done during them?

40s. Got married, expanded my world and activities

What would you like to do if you didn’t have your condition?

Hike, walk, be a real person. Be able to eat.

If you had to describe your life in a sentence, what would it be?

My life is wasted.

Finally, what advice would you give to a person in a similar situation?

Give up before your soul cracks.

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everyone dies

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