OK, so I think I've made a decision.
I'm scheduled for a myectomy at Stanford Hospital on March 17. On that day, I'm supposed to have Dr. Mallidi, the relatively new Stanford Center of Excellence heart surgeon and designated myectomy specialist, shave out my septum.
By all indications (Echo, MRI) I have a "classic" obstruction, and therefore need a classic myectomy. Dr. Mallidi came from the Toronto group that has done 1000+ myectomies with no mortalities, so that seems like a good group to be from. You can download the writeup that documents these myectomy outcomes from the HCMA.
I also have the good luck to live a mile from Stanford. It's nice to have HCM and be so close to a Center of Excellence. Ideally, I only have to travel a short ride there and back, not a day's ordeal through airports. And be near my usual doctors, familiar with my case, and with the support of family and friends all right here.
It was a tough decision - I can't imagine actually volunteering for having my chest chopped open, so I try not to think about it and instead think about how I might be able ride my bike with my 10 year old son again. And by that measure, once I heard that my situation could be most likely improved, and read some of the stories here on the HCMA board, I say "Let's get on with it" - I'm not sure I could keep on going as things have been lately. I've seen my capabilities diminish quite a bit just in the past 4 months or so, and tweaking medications hasn't helped.
Yet, I'm still on the fence, and have a backup plan to get on the schedule for Dr. Smidera at the Cleveland Clinic (CCF) if I have to. (My cardiologist is content to refer me either direction)
Why the fence sitting?
Well, there is the appeal of going to an expert, the best, the Mozart of myectomies. Why not the best? Don't I deserve it? ... and then we consider the awkwardness of traveling across the country, and the extra inconvenience for my family, my wife's time away from work, and of course the extra expense. Since my case is classic, I don't need a maestro. It's really a questionable value.
But this may tip the scales -
Stanford Hospital nurses just voted to authorize a strike. If they call a strike tomorrow (3/7), in 10 days, they walk out, right in the middle of my hospital stay.
Aside from the generic question about crossing a picket line, the Stanford nurses were on strike when we had our son 10 years ago. I had to stay with my wife just about 24 hours a day since the substitute nurses just didn't know where things were, didn't respond to call buttons, and generally had this "who cares, I'll be outta here" kind of attitude. And this was just for a routine C-section, not a cardiac ICU. We swore we'd never go into a hospital on strike again - and now, 10 years later, the 10 year contract is expired, and I need heart surgery...
So, I guess this is the start of my myectomy journey. It may be a striking story no matter how you look at it.
I've seen a lot of people post their pre-op and post-op diaries here, so if you don't mind I'll do the same - I think it's good for me to have a place to get my thoughts and feelings out, and I greatly appreciate the feedback you have to give me.
At the moment, I just try not to get too scared, and keep my eyes on all the things I may be able to do again once it's all over. Biking with my son. Hiking in Yosemite. Maybe that climb to Machu Picchu we have yet to do.
Wish me luck.
Frank S.
I'm scheduled for a myectomy at Stanford Hospital on March 17. On that day, I'm supposed to have Dr. Mallidi, the relatively new Stanford Center of Excellence heart surgeon and designated myectomy specialist, shave out my septum.
By all indications (Echo, MRI) I have a "classic" obstruction, and therefore need a classic myectomy. Dr. Mallidi came from the Toronto group that has done 1000+ myectomies with no mortalities, so that seems like a good group to be from. You can download the writeup that documents these myectomy outcomes from the HCMA.
I also have the good luck to live a mile from Stanford. It's nice to have HCM and be so close to a Center of Excellence. Ideally, I only have to travel a short ride there and back, not a day's ordeal through airports. And be near my usual doctors, familiar with my case, and with the support of family and friends all right here.
It was a tough decision - I can't imagine actually volunteering for having my chest chopped open, so I try not to think about it and instead think about how I might be able ride my bike with my 10 year old son again. And by that measure, once I heard that my situation could be most likely improved, and read some of the stories here on the HCMA board, I say "Let's get on with it" - I'm not sure I could keep on going as things have been lately. I've seen my capabilities diminish quite a bit just in the past 4 months or so, and tweaking medications hasn't helped.
Yet, I'm still on the fence, and have a backup plan to get on the schedule for Dr. Smidera at the Cleveland Clinic (CCF) if I have to. (My cardiologist is content to refer me either direction)
Why the fence sitting?
Well, there is the appeal of going to an expert, the best, the Mozart of myectomies. Why not the best? Don't I deserve it? ... and then we consider the awkwardness of traveling across the country, and the extra inconvenience for my family, my wife's time away from work, and of course the extra expense. Since my case is classic, I don't need a maestro. It's really a questionable value.
But this may tip the scales -
Stanford Hospital nurses just voted to authorize a strike. If they call a strike tomorrow (3/7), in 10 days, they walk out, right in the middle of my hospital stay.
Aside from the generic question about crossing a picket line, the Stanford nurses were on strike when we had our son 10 years ago. I had to stay with my wife just about 24 hours a day since the substitute nurses just didn't know where things were, didn't respond to call buttons, and generally had this "who cares, I'll be outta here" kind of attitude. And this was just for a routine C-section, not a cardiac ICU. We swore we'd never go into a hospital on strike again - and now, 10 years later, the 10 year contract is expired, and I need heart surgery...
So, I guess this is the start of my myectomy journey. It may be a striking story no matter how you look at it.

I've seen a lot of people post their pre-op and post-op diaries here, so if you don't mind I'll do the same - I think it's good for me to have a place to get my thoughts and feelings out, and I greatly appreciate the feedback you have to give me.
At the moment, I just try not to get too scared, and keep my eyes on all the things I may be able to do again once it's all over. Biking with my son. Hiking in Yosemite. Maybe that climb to Machu Picchu we have yet to do.
Wish me luck.
Frank S.
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