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lisa7
@lisa7

Posts: 5
Joined: May 11, 2016

Not able to overcome my anxiety and FEAR related to my HCM

Posted by @lisa7, May 10, 2016

Hello, I had surgery at Mayo in 2014, a cardiac septal myectomy. It has enabled me to go back to work, I am so thrilled.

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I have Hypertrophic Obstructive Cardiomyopathy. I have gained some weight, about 15 pounds since my surgery. My hypertension has gotten worse due to primarily stress and anxiety. I have so many things to be thankful for, but I have not been able to overcome my anxiety and FEAR related to my HCM, and I need to move out of this mindset.

@lisa7

I have Hypertrophic Obstructive Cardiomyopathy. I have gained some weight, about 15 pounds since my surgery. My hypertension has gotten worse due to primarily stress and anxiety. I have so many things to be thankful for, but I have not been able to overcome my anxiety and FEAR related to my HCM, and I need to move out of this mindset.

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Welcome to Connect @lisa7

I see that you also posted on another thread about HOCM and have met @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @barbararickard @FrancineFafard and others. You raise a very good discussion topic here – the anxiety and fear related to living with hypertrophic cardiomyopathy (HCM). You’re not alone.

Paging all HCM Connect members to share their thoughts about dealing with anxiety and fear. How have you managed? What tips can you offer Lisa?

Lisa – I have found that the longer I have lived with HCM the less my anxiety related to it is. I have been living with HCM for 17 years now, and I had a myectomy 10 years ago. I also have an ICD — I am on my 3rd device. Just today I was having in interrogated and the Medtronic rep was thanking me for being so calm. And I think the reason is that I have spent alot of time learning about HCM and the understanding of it has really helped me cope.

Everyone is different, and that might not be the ticket for you, but for me, learning what can make it worse, and learning how to take care of myself have gone a long way to dealing with my anxiety. The other thing I have realized is that none of us are in control of our destiny, so there is no sense worrying about what might happen. Best to try to enjoy the present cause we can only do so much about ithe future, and so we should enjoy the time we have to the fullest.

Hope that helps you, and hope to see you around here. Learning and speaking with others with HCM is another thing that I really find helpful.

Hi, Lisa, I have also learned everything I could about this disease. I knew a lot before I was diagnosed because it runs in my family, but have learned even more since. I’ve learned to enjoy ferreting our new recipes to try (low sodium and heart healthy.) I have had to listen to my body and learn when I need to just stop and rest,something I have had to REALLY learn to do as I have pushed myself all of my life. I have also learned that I have good days and bad days and I need to accept the bad days. I can’t control that that. I have an ICD and I see it as my friend and know it will (and has) saved my life. I know my doctors will take good care of me and take comfort in that. Mostly, be gentle with yourself and find some things that help you distract yourself-put your feet up and watch a movie, or a favorite show, cuddle a pet or talk to a friend (sometimes I find that frustrating as they can’t really understand.) I also agree that talking to others with HCM, whether online or in person, makes a bit difference. Sometimes all I need to do is give voice to what is bothering me and it helps. Some days I curl up with a book, a movie or my cats, or all of the above.

I had a septal myectomoy on March 25, 2016 and an ICD put in 3 days later. Can you give me some idea how long it takes for the pain associated with the ICD site and lump to go away

@lucindag

I had a septal myectomoy on March 25, 2016 and an ICD put in 3 days later. Can you give me some idea how long it takes for the pain associated with the ICD site and lump to go away

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@lynnkay1956 I bet you could help answer this question about post surgical pain and swelling for @lucindag.

I didn’t have an ICD put in…The myectomy pain was acute for 2 weeks…I still had shoulder and back pain for a couple more weeks, but nothing that tylenol couldn’t handle.. As far as anxiety and fear…I have offloaded 30 bags of mulch by myself, had lots of wild activities and no problems with heart. The cardiac rehab people monitored me when I exercised and no events whatsoever. I only went a couple weeks.

PS my heart is better now then it has been in years…I have no limitations my doc says.

@cynaburst

Lisa – I have found that the longer I have lived with HCM the less my anxiety related to it is. I have been living with HCM for 17 years now, and I had a myectomy 10 years ago. I also have an ICD — I am on my 3rd device. Just today I was having in interrogated and the Medtronic rep was thanking me for being so calm. And I think the reason is that I have spent alot of time learning about HCM and the understanding of it has really helped me cope.

Everyone is different, and that might not be the ticket for you, but for me, learning what can make it worse, and learning how to take care of myself have gone a long way to dealing with my anxiety. The other thing I have realized is that none of us are in control of our destiny, so there is no sense worrying about what might happen. Best to try to enjoy the present cause we can only do so much about ithe future, and so we should enjoy the time we have to the fullest.

Hope that helps you, and hope to see you around here. Learning and speaking with others with HCM is another thing that I really find helpful.

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I have an ICD also. My mother had SCD at my house. She didn’t have an ICD. I have always let physical concerns get the best of me, it affects me emotionally and at the same time I am so thankful that I had the surgery and I am better. I’m afraid I alienated the HELL out of almost everybody I know when I was so sick and not getting enough oxygen due to my obstruction. I’ve tried to make AMMENDS, but people can be unforgiving I’m afraid. Just looking for a way to get my life back

@lucindag

I had a septal myectomoy on March 25, 2016 and an ICD put in 3 days later. Can you give me some idea how long it takes for the pain associated with the ICD site and lump to go away

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It depends on the location, either on top of muscle, under muscle or in muscle. I was on top of and it hurt a few weeks – nothing to medicate over. When I had the generator replaced last year, I had them insert it in the muscle. It hurt a lot more and required pain meds for a week or so – then every so often, BUT it did hurt a good month- month & a half.
As to the lump – its likely the device. If your on the thinner side it’ll show more, if your thicker – well, it won’t show too much. Do talk with your doctor regarding your concerns.

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