1. < Hypertrophic Cardiomyopathy (HCM)

COVID and hypertrophic cardiomyopathy

Posted by jenturbeville @jenturbeville, Aug 9, 2020

Is the Covid drug therapy HCQ safe for those of us with HCM? From what I’ve read HCM puts me in a very high risk group should I get this virus. I’d like to know if you consider this a viable option of treatment. My surgery to remove my obstruction (due to HCM) was done at Mayo Clinic in 2016.

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susanhuber | @susanhuber | Aug 9, 2020

I had Covid. I have not been diagnosed with HCM but I do have heart failure and other issues. I was treated with 2 rounds of ZPack and 2 rounds of Steroid - Dexamethasone. I was extremely ill and had literally every symptom of Covid. I tested at a drive thru testing site and then ended up going to urgent care 3 days later when it became painful to breathe. They did a rapid test for Covid and it was positive. I thought if I could get steroids which is what I’m usually given when sick with respiratory issues it would help me stay out of the hospital. I was determined to not be admitted as I was afraid if I went in I may not come out. I carefully watched my vitals, my 02 and was told if it was 94 to go to ER. I knew that was in the norm but the urgent care doctor said she wanted me to stay safe and not wait till it got too low. But I ignored that advice and wanted to stay safe at home. If I felt like I was struggling too much I certainly would have gone to hospital. I stayed home checked my O2 frequently and it would get as low as 90 at night but it would come back up to 94. As long as I saw it coming back up, I was happy. The other issue about the hospital for me is I would be completely alone. I’ve heard stories of people calling for help to bathroom or whatever and it would be hours before someone would come. I know the hospitals are overwhelmed and if I was able to stay home, I was one less person they would have to worry about. Anyway, sorry for the long response. Just wanted you to know how I was treated and it worked! I’m still weak but doing so much better! Praying you don’t get Covid and have to worry about what medicine to take! God Bless!

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 9, 2020

Hello @jenturbeville, Welcome to Mayo Clinic Connect. There is a New Scientific Paper Published on HCM and COVID-19 available on Mayo Clinic's Newsfeed here: https://connect.mayoclinic.org/page/genetic-heart-rhythm-disorders/newsfeed-post/new-scientific-paper-published-on-hcm-and-covid-19/.

There is also a Mayo Clinic page that specifically addresses COVID-19 treatment strategy for Patients with Genetic Heart Disease and COVID-19: https://connect.mayoclinic.org/page/genetic-heart-rhythm-disorders/tab/covid-19/

I would discuss it with your doctor to hopefully put any concerns you may have to rest. Are you having any COVID-19 symptoms or are you just concerned?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 9, 2020

Welcome @jenturbeville and @susanhuber. Thanks for sharing your story, Susan.
Jen, People with certain heart diseases may be more susceptible to worse outcomes with COVID-19. That is why you should take extra precautions to stay uninfected, like washing your hands frequently, stay physically distant from other people when you go out, stay home or in your social bubble, etc. The FDA cautions against use of hydroxychloroquine or chloroquine for COVID-19 outside of the hospital setting or a clinical trial due to risk of heart rhythm problems. These medications should NOT be used a prevention medications.

Here's further information:
- https://www.fda.gov/drugs/drug-safety-and-availability/fda-cautions-against-use-hydroxychloroquine-or-chloroquine-covid-19-outside-hospital-setting-or
- https://www.covid19treatmentguidelines.nih.gov/antiviral-therapy/chloroquine-or-hydroxychloroquine

Do you think you have contracted COVID?

REPLY
2 replies
jenturbeville | @jenturbeville | Aug 9, 2020
In reply to @susanhuber "I had Covid. I have not been diagnosed with HCM but I do have heart failure..." + (show)
@susanhuber

I had Covid. I have not been diagnosed with HCM but I do have heart failure and other issues. I was treated with 2 rounds of ZPack and 2 rounds of Steroid - Dexamethasone. I was extremely ill and had literally every symptom of Covid. I tested at a drive thru testing site and then ended up going to urgent care 3 days later when it became painful to breathe. They did a rapid test for Covid and it was positive. I thought if I could get steroids which is what I’m usually given when sick with respiratory issues it would help me stay out of the hospital. I was determined to not be admitted as I was afraid if I went in I may not come out. I carefully watched my vitals, my 02 and was told if it was 94 to go to ER. I knew that was in the norm but the urgent care doctor said she wanted me to stay safe and not wait till it got too low. But I ignored that advice and wanted to stay safe at home. If I felt like I was struggling too much I certainly would have gone to hospital. I stayed home checked my O2 frequently and it would get as low as 90 at night but it would come back up to 94. As long as I saw it coming back up, I was happy. The other issue about the hospital for me is I would be completely alone. I’ve heard stories of people calling for help to bathroom or whatever and it would be hours before someone would come. I know the hospitals are overwhelmed and if I was able to stay home, I was one less person they would have to worry about. Anyway, sorry for the long response. Just wanted you to know how I was treated and it worked! I’m still weak but doing so much better! Praying you don’t get Covid and have to worry about what medicine to take! God Bless!

Jump to this post

Thank you for your story! I’m glad you are better!

REPLY
1 reply
jenturbeville | @jenturbeville | Aug 9, 2020
In reply to @colleenyoung "Welcome @jenturbeville and @susanhuber. Thanks for sharing your story, Susan. Jen, People with certain heart diseases..." + (show)
@colleenyoung

Welcome @jenturbeville and @susanhuber. Thanks for sharing your story, Susan.
Jen, People with certain heart diseases may be more susceptible to worse outcomes with COVID-19. That is why you should take extra precautions to stay uninfected, like washing your hands frequently, stay physically distant from other people when you go out, stay home or in your social bubble, etc. The FDA cautions against use of hydroxychloroquine or chloroquine for COVID-19 outside of the hospital setting or a clinical trial due to risk of heart rhythm problems. These medications should NOT be used a prevention medications.

Here's further information:
- https://www.fda.gov/drugs/drug-safety-and-availability/fda-cautions-against-use-hydroxychloroquine-or-chloroquine-covid-19-outside-hospital-setting-or
- https://www.covid19treatmentguidelines.nih.gov/antiviral-therapy/chloroquine-or-hydroxychloroquine

Do you think you have contracted COVID?

Jump to this post

I don’t think I have contracted Covid-just trying to determine my chances of survival if I should get the virus. Thanks for the info and referenced articles. They were informative...and depressing.

REPLY
susanhuber | @susanhuber | Aug 9, 2020
In reply to @jenturbeville "Thank you for your story! I’m glad you are better!" + (show)
@jenturbeville

Thank you for your story! I’m glad you are better!

Jump to this post

Thank you! Praying you all stay well!!

REPLY
susanhuber | @susanhuber | Aug 9, 2020
In reply to @colleenyoung "Welcome @jenturbeville and @susanhuber. Thanks for sharing your story, Susan. Jen, People with certain heart diseases..." + (show)
@colleenyoung

Welcome @jenturbeville and @susanhuber. Thanks for sharing your story, Susan.
Jen, People with certain heart diseases may be more susceptible to worse outcomes with COVID-19. That is why you should take extra precautions to stay uninfected, like washing your hands frequently, stay physically distant from other people when you go out, stay home or in your social bubble, etc. The FDA cautions against use of hydroxychloroquine or chloroquine for COVID-19 outside of the hospital setting or a clinical trial due to risk of heart rhythm problems. These medications should NOT be used a prevention medications.

Here's further information:
- https://www.fda.gov/drugs/drug-safety-and-availability/fda-cautions-against-use-hydroxychloroquine-or-chloroquine-covid-19-outside-hospital-setting-or
- https://www.covid19treatmentguidelines.nih.gov/antiviral-therapy/chloroquine-or-hydroxychloroquine

Do you think you have contracted COVID?

Jump to this post

Thank you!

REPLY
cmmorrisrn | @cmmorrisrn | Oct 23, 2020

Has anyone with HCM that had Covid experiencing arrhythmias months later. I had it and it really wasn’t too bad. Recovered and 2 weeks later started with pvcs that would last days. As weeks went on and several beta blocker changes later the pvcs have lessened but are still there. I noticed now that I have increased heartburn and reflux and when I eat too much or certain things food feels like it is getting stuck and causes arrhythmias. Esophogram showed small hiatal hernia but otherwise normal. Also shortness of breath with and without exertion is present. Curious to see if anyone else is having these arrhythmias 3 months after Covid. I had an ablation in 2006 and my echo showed nothing new.

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