Gordon Fox • April 25, 2025
Decisions in HCM: Why are they so hard?

by Gordon Fox: 2nd in a series

Making decisions can be hard, and this is especially true when health is involved. A key reason is that most decisions involve more than one risk. 

Decisions involve multiple risks

For medical treatments, there is usually a risk of not treating, as well as a risk of treating. In other words, there are typically tradeoffs to evaluate. Imagine that your doctor has recommended you have an ICD implanted because you have a high risk of dangerous arrhythmias that might lead to cardiac arrest. Occasionally, we hear suggestions that all HCM patients should have ICDs, but that ignores the tradeoff: the treatment itself has the potential to cause problems from anesthesia, surgery, infection, inappropriate shocks, and defects in the devices and leads. And it costs money. Deciding to have an ICD implanted should be based on weighing the tradeoffs.


Some risks are known

We know a lot about how serious these risks are, so it's possible to say that (your actual risks will be different from these examples) "your risk of cardiac arrest is about 3% a year, and in about 5% of patients, the leads need to be repaired later.” 


Some risks can’t be calculated

Some issues have too many unknowns for anyone to calculate the risks. Perhaps you are deciding whether to have a child. If you have a gene mutation that promotes HCM, we know exactly what the chance is that your child will also have that mutation. But we can't say what the chance is that they will develop HCM because we still need to understand more about the process that causes some people to develop the disease while others don't. 


Some risks could not be measured even if all the scientific issues were worked out. In deciding whether to have a child, there are issues like how you will feel if your child has HCM. That is a real issue that should enter into decision-making, but nobody can say whether you will feel OK about it.


Aims of this blog series


In this series of blog posts, we will consider some examples of complex decisions that HCM patients often have to make. We can't tell you the best choice- sometimes that depends on your values. We hope you will gain some insights into thinking about all the risks and benefits and how to use that information to make rational decisions.


Read Part 1:
Decisions in HCM

HCMA Blog

Two Caucasian women face a computer monitor. One wears casual clothes, the other a lab coat.
By Gordon Fox June 9, 2025
In the fifth in a series. Gordon Fox, PhD. looks at the impact of risk estimates in HCM and delves into what it means if the risk estimate seems off.
By Lisa Salberg June 9, 2025
June 2025 is upon us and with it comes a great deal of mixed emotions for me and the basis of the founding of HCMA. Origin stories how things began has become quite a topic for Disney movies and marvel comics. But today I'm going to talk about origin stories from the HCMA. The services of the HCMA are based upon lived experience from real patients seeking better care and a chance of a future. Why are bases of intake and navigation calls? They are the starting point for deeper understanding of the condition and access to care. Because on a June day in 1995 my sister, who was 36 years old at the time, was in a situation we could never have predicted. And, at that moment in time, having more knowledge and understanding of the disease could have played important roles in decision-making prior to her cardiac arrest and after. On June 6th, 2025, my sisters held a baby shower for me excited at the prospects of their new niece coming in July. June 12th 1995. My sister would have a cardiac arrest and we would wait for her to wake up. Like any family who has waited for a cardiac arrest victim to wake up or not, nothing could have prepared us for what lay ahead. June 16th, 1995 my sister was pronounced dead and in the early morning hours of June 17th her organs were procured and given to others in hope of saving their lives. On Father's Day a wake was held. The following day was her funeral. I don't think I will ever forget the look on my father's face as he stood next to his daughter's coffin on Father's Day. But I had not considered, on that day, and because my brain couldn't handle it, was that when my father was 18 years old, he stood next to his father's coffin on Father's Day, which also should have been his graduation day. On June 21st, 1953 my grandfather had died from a sudden cardiac arrest at the age of 43. 17 years ago my father also passed on June 7th, 2008. On June 16th, 1990, a few short weeks after my wedding, I thought I had a headache and that was unusual. It was actually a stroke, one of a series of strokes that came after I had received dental work without antibiotics and developed endocarditis and multiple clots formed throughout my body. June always makes me a little nervous…and it reminds me of the fraility of human life. As with any other month of the year, good things in June have happened for our family as well, including my sister and brother-in-law's wedding and her birthday. Happy anniversary, Lynn and Kevin! It was also my mother's birthday and on my mother's birthday in 1976, my life was made better by my new neighbors and lifelong best friend coming into my life. It's hard to believe it's almost 50 years ago. So on this June 2025 this month's message will not be about the places that I've been in the past month or where I'm going next month. It will be to remind you all that this community was built because of one special woman. Her name was Lori and she was my sister and she will always be at the heart of our big-hearted community. I miss you Lori! Today and always. Please take a look at our calendar of events for June and July. We have some great programs coming up including an in-person event in Seattle. I hope to see many of you there. Make some good memories this June Sincerely, Lisa
A mixed race family in denim walks down a road, the child on a tricycle
By Sabrina Cuddy June 4, 2025
Experts agree that exercise is healthy for people with HCM. Depending on symptoms, most people with HCM can safely do at least light exercise. Learn more in this month's blog pog post by Health Educator Sabrina Cuddy.
More Posts