1. < Hypertrophic Cardiomyopathy (HCM)

Diagnosed with HOCM last year. May be time for surgery

Posted by barbararickard @barbararickard, Feb 9, 2016

Hello, I was diagnosed with HOCM last year. I have been told I may be approaching the time for surgery. The last MRI showed a 10% worsening in valve pressure. I am in the process of getting a second opinion. I have pain and dizziness and breathing is hard. I am scared. I worry if I have to have surgery something will happen. I know I shouldn't but I do. I've had problems with my heart since I was a kid I am 54 now. I feel alone with this problem. I put on a brave face for my husband and kids but alone I almost feel defeated. I wonder if there is anybody out there that had this heart disease and if so are they ok and how did it go? Thank you all for reading this and I hope everyone who is sick to get well soon.

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lynnkay1956 | @lynnkay1956 | Feb 14, 2016

I am 59 and had a septal myectomy and had my aortic stenosis fixed this past December. I watched all the graphic videos I could find on line that showed the surgery...you don't wanna do that...it scared me to death. My outflow was basically blocked so I needed the surgery...I feel so much better now...but I worried so much before the surgery that I nearly didn't have it. I was so fearful. Lynn ( I had mine done at Mayo Clinic in Rochester Mn)

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2 replies
PatMattos | @PatMattos | Feb 14, 2016

Hi, Barbara,
I have HCM also, diagnosed following a cardiac arrest in 2010. You are most definately not alone. I am a patient at Mayo and most impressed by their knowledge. The questions Cyna suggested are excellent-it is important to know that your heart is being trusted to people who have the expertise to successfully do the surgery if needed. If you can't fly, would train be an option? It's slow and a bit of a pain (though I LOVE trains) but it might be possible. Please let us know and know that we are here to support you.

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2 replies
barbararickard | @barbararickard | Feb 20, 2016
In reply to @cynaburst "Hi Barbara - When you meet with the doctors next week, make sure you ask them..." + (show)
@cynaburst

Hi Barbara - When you meet with the doctors next week, make sure you ask them the following:

-what is your outflow tract gradient ? this is the number - in millimeters of mecury or MM/hg) that shows how much your blood flow is obstructed.

-How many myectomies do they do a year?

-How many HCM patients do they see total?

As I said before, it is critical to be treated by a place that sees and has operated on MANY HCM and myectomy patients. This operation, more than many, is so highly dependent on the skill of the surgeon. That is why it is so important to see an experienced surgeon. Some people decide to have the surgery with a local surgeon, only to find out months later that their symptoms have returned because the surgeon did not remove enough muscle. This is not an operation that you want to go through more than once if you don't have to. Best to have it done the right way the first time!

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Hi, sorry it's been awhile since I talked on here, didn't know I had some more responses... I think I know what you might be talking about, the last time I had an MRI it showed something the dr said was 78 % not sure what that meant but that may be it? That's kind of been on my mind since then, wonder if that's bad or not. The year before it was 64%. so don't know, but I will ask the DR. when I see him on the 25th. Things here have been pretty crazy. A lot of up's and downs. My emotions have been crazy. Was supposed to go to my sisters bridal shower today but I couldn't sleep at all last night, maybe 4 hrs and the drive is almost 2 hours long, I have such a hard time sleeping, if I cant sleep my heart feels so much worse, but when I do sleep well it feels better. been crying all day I feel so alone. I have a huge family but I feel like nobody cares. Probably just being stupid and sorry for myself. It dose'nt help that I am alone out in the country. ty so much for the information and I will ask the DR about all that. 🙂 ps went for a walk around the field today, slow going but it seemed to help.

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barbararickard | @barbararickard | Feb 20, 2016
In reply to @lepadelford "Barbara, You are not alone. I am a 44 year old female that was diagnosed with..." + (show)
@lepadelford

Barbara,

You are not alone. I am a 44 year old female that was diagnosed with HOCM in November of 2010 and had open heart surgery to replace my mitral valve and a myectomy. I was referred to Stanford Cardiology Clinics as they specialize in this disease. That is where my cardiologist is located as well as the surgeon who did my surgery. I have had such great care and the staff is amazing. If you ever feel alone and want to talk about this disease or just about life in general I would like to be your friend and say reach out to me.

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ty lapadelford, It is so nice to see people out there like me, altho I wouldn't wish this on anyone. They said I might have to have my mitral valve repaired at the same time they do the myectomy. but I have hope that isn't the case. Sounds like your feeling better? I am so happy. 🙂 ps you are so young to have had to have the operation already, but from what I hear they say it is better when your younger?

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barbararickard | @barbararickard | Feb 20, 2016
In reply to @lynnkay1956 "I am 59 and had a septal myectomy and had my aortic stenosis fixed this past..." + (show)
@lynnkay1956

I am 59 and had a septal myectomy and had my aortic stenosis fixed this past December. I watched all the graphic videos I could find on line that showed the surgery...you don't wanna do that...it scared me to death. My outflow was basically blocked so I needed the surgery...I feel so much better now...but I worried so much before the surgery that I nearly didn't have it. I was so fearful. Lynn ( I had mine done at Mayo Clinic in Rochester Mn)

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That's what I did, I read as much info as I could find online, That was the wrong thing to do. scared me for sure.

REPLY
barbararickard | @barbararickard | Feb 20, 2016
In reply to @PatMattos "Hi, Barbara, I have HCM also, diagnosed following a cardiac arrest in 2010. You are most..." + (show)
@PatMattos

Hi, Barbara,
I have HCM also, diagnosed following a cardiac arrest in 2010. You are most definately not alone. I am a patient at Mayo and most impressed by their knowledge. The questions Cyna suggested are excellent-it is important to know that your heart is being trusted to people who have the expertise to successfully do the surgery if needed. If you can't fly, would train be an option? It's slow and a bit of a pain (though I LOVE trains) but it might be possible. Please let us know and know that we are here to support you.

Jump to this post

Taking a train is definitely an option. I'm glad you suggested that. Sometimes it's hard to think past the next dr apt. lol and ty for caring.

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lynnkay1956 | @lynnkay1956 | Feb 20, 2016

Just think about going to sleep and everything will be fine when you wake up. I had to keep telling myself I will be fine. I don't think Mayo has lost anyone with the surgery for many many years...if anything goes wrong they can fix it. For example ( I hope it doesn't scare you even more) I was on the heart lung machine and they fixed my heart...when they take you off and get your heart going again ( you won't feel anything or know whats going on because you are sound asleep) My heart was kicking back a lot of blood...it was bleeding somewhere....so they put me back on the heart lung machine and took out all the sutures looking for the bleed...it was the first suture...it wasn't holding right so they sewed me back up again, took me off the heart lung machine. Everything works just fine. They keep you in a cardiac ICU and you are on a ventilator...which you have no memory of either...I actually have no memory of most of the 6 days I was in the hospital. It doesn't hurt to get the pacer wires pulled out and the 2 chest tubes...it's odd that it doesn't hurt...but it didn't . I have no pain now, heart is working great and happy I had it done. Are you having Dr Schaff as your surgeon? -Lynn

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barbararickard | @barbararickard | Feb 20, 2016

Don't know anything until I talk to the second opinion DR. in Eugene or, if he says he agrees I need the surgery then I will contact a surgeon.

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PatMattos | @PatMattos | Feb 20, 2016
In reply to @PatMattos "Hi, Barbara, I have HCM also, diagnosed following a cardiac arrest in 2010. You are most..." + (show)
@PatMattos

Hi, Barbara,
I have HCM also, diagnosed following a cardiac arrest in 2010. You are most definately not alone. I am a patient at Mayo and most impressed by their knowledge. The questions Cyna suggested are excellent-it is important to know that your heart is being trusted to people who have the expertise to successfully do the surgery if needed. If you can't fly, would train be an option? It's slow and a bit of a pain (though I LOVE trains) but it might be possible. Please let us know and know that we are here to support you.

Jump to this post

You are most welcome. We need to be here for each other!

REPLY
barbararickard | @barbararickard | Mar 10, 2016

Hello everyone, Well I had my new Cardiologist appointment and it went well. Dr. Matthew Trojan is now my new Cardiologist. He is Great. Were going to try and put off the surgery for as long as we can since the medicine is working for me for the most part. I can also exercise at PeaceHealth hospital in Springfield, I will have monitor's on me, and hopefully I will get healthier when the time comes for me to need surgery, he also said he will send me to Mayo Clinic because PeaceHealth doesn't have the experience needed. I really like this Doctor he is very through and I understand more now. I don't know how long this medicine will work for me. As it stands now the medicine works about 80% of the time and I still run out of air and get dizzy, I guess I just have to take it easy till then. 🙂

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