HCM-ers: Introduce yourself or just say hi

Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect – a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.

I invite you to follow the group. Simply click the follow icon image-f6386d0357e2 on the group landing page

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.

Why not start by introducing yourself here?

@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home….any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions….so thanks in advance for your help.

Cheers

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I was a HAPPY camper in my recliner. Just shows what works for one, and not the other. A day short of 14 weeks out of my myectomy.

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@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home….any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions….so thanks in advance for your help.

Cheers

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I want to bring up the real facts on teeth cleaning, and having a colonoscopy. I am 14 weeks out, and was under the impression that I could get my teeth cleaned after 3 months. Especially after spending thousand dollars and more on periodontal disease before the surgery. It was quit the fiasco going back and forth with the dentist office, and finally getting to the real reason and truth behind the reasoning. I was told that they don t want you to have anytjing done for 6 months. Not to risk any infection. The same goes for a colonoscopy. I am contacting Mayos patient advisery people to hopefully put it in the guides, for after surgery.

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@vialox

Thank you everyone for your comments. I really appreciate your stories and experiences with this decease.
It is much easier to make a decision being prepared. I have already read a lot of posts on this subject but still feel hungry for more. I am from Illinois and my current symptom progressing makes me thinking how to arrange the appointment with Mayo.
Should I ask my local cardiologist for referral or I can do it on my own? What are the prons and cons for both?
What is an approximate wait time from scheduling until appointment? As I understand I need to see the Mayo’s cardiologist first & go through some tests. If he recommends myectomy can I choose a surgeon?

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They do this all the time. Grrrrrrr.

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@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home….any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions….so thanks in advance for your help.

Cheers

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Thanks for the response. I am planning on having my teeth looked at by my dentist in the next week or so (if he can squeeze me in) as I was scheduled for July- which is too soon after the surgery. Think I will invest in a recliner. Thanks

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@ataylor8668

Good afternoon all. I am a 45 yr old male who was diagnosed about 2 years ago with HCM. Things have progressed to the point that I am having/need the surgery. Have to admit I am a bit terrified, but know I am in Great hands at Mayo. I have also had a couple major surgeries for some unrelated issues, so I have a general sense of the hospital experience.

I have had a history of back problems, and from reading this board, seems like this is a common struggle post surgery. I am thinking I need to go out and buy a recliner to sleep in when I return home….any advice from those who have gone through the recovery process? I have sleep apnea, and do use a CPAP, but have never been able to sleep flat on my back, so I am trying to get something worked out before the procedure.

This all became real this past week, so I am reeling a bit and sure will have additional questions….so thanks in advance for your help.

Cheers

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First, you are in great hands. In my case, (I had a septal myectomy and double bypass in Dec of 15) the surgery dramatically improved my health. The Mayo team was wonderful from everyone I was in contact with. (Full disclosure,I work here in Public Affairs) I could tell my heart was pumping so much better even after the first day. When it was quiet I could hear the strong heart beats, which I never could before. With that said, the experience was tough the first two days, but it improved quickly. I would recommend that you aggressively try walking and push yourself and enroll in cardiac rehab if at all possible. I would strongly recommend a recliner. We didn’t have one after the surgery and that would be one of the first things we would have done in hindsight. It was really hard to get up off the couch or out of bed the first three weeks. I felt like a turtle. Good luck.

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Hello all. I was recently diagnosed with HMC (obstructive). I am 41 and have never been diagnosed with a heart murmur or any other heart problems before. I’m still in a bit of shock I guess. My only symptoms were being out of breath when I recently trained for a 5K. (I thought I was just out of shape). I have moderate to severe thickening of the left wall. I did have genetic testing done which came back negative?? Leaving me even more confused as to how I came to have this. I have only seen a local heart dr. Who assured me I am at “low-risk” for sudden death but did put me on Metatropol and regular checkups. I guess my concern is if this is enough…

I’ve just found this group and will be researching others who have negative genetic testing and similar stories. I guess my biggest fear is if I should have a second opinion or just go live my life like my Dr. said.

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@tkterrell

Hello all. I was recently diagnosed with HMC (obstructive). I am 41 and have never been diagnosed with a heart murmur or any other heart problems before. I’m still in a bit of shock I guess. My only symptoms were being out of breath when I recently trained for a 5K. (I thought I was just out of shape). I have moderate to severe thickening of the left wall. I did have genetic testing done which came back negative?? Leaving me even more confused as to how I came to have this. I have only seen a local heart dr. Who assured me I am at “low-risk” for sudden death but did put me on Metatropol and regular checkups. I guess my concern is if this is enough…

I’ve just found this group and will be researching others who have negative genetic testing and similar stories. I guess my biggest fear is if I should have a second opinion or just go live my life like my Dr. said.

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The likelihood is that you will live your life with few changes due to your diagnosis. They have so far only identified some of the genes that cause HCM, so just because your test came back negative does not mean that yours is not genetic.

Nevertheless, it is best to be treated at a place that has substantial expertise with HCM like Mayo Clinic who can do a thorough assessment of your situation. Where do you live?

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@tkterrell

Hello all. I was recently diagnosed with HMC (obstructive). I am 41 and have never been diagnosed with a heart murmur or any other heart problems before. I’m still in a bit of shock I guess. My only symptoms were being out of breath when I recently trained for a 5K. (I thought I was just out of shape). I have moderate to severe thickening of the left wall. I did have genetic testing done which came back negative?? Leaving me even more confused as to how I came to have this. I have only seen a local heart dr. Who assured me I am at “low-risk” for sudden death but did put me on Metatropol and regular checkups. I guess my concern is if this is enough…

I’ve just found this group and will be researching others who have negative genetic testing and similar stories. I guess my biggest fear is if I should have a second opinion or just go live my life like my Dr. said.

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McComb, Mississippi

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@tkterrell

Hello all. I was recently diagnosed with HMC (obstructive). I am 41 and have never been diagnosed with a heart murmur or any other heart problems before. I’m still in a bit of shock I guess. My only symptoms were being out of breath when I recently trained for a 5K. (I thought I was just out of shape). I have moderate to severe thickening of the left wall. I did have genetic testing done which came back negative?? Leaving me even more confused as to how I came to have this. I have only seen a local heart dr. Who assured me I am at “low-risk” for sudden death but did put me on Metatropol and regular checkups. I guess my concern is if this is enough…

I’ve just found this group and will be researching others who have negative genetic testing and similar stories. I guess my biggest fear is if I should have a second opinion or just go live my life like my Dr. said.

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My physician at Mayo said that genetic testing still has a ways to go when identifying the HCM gene, in that it does not always show up. Getting a second opinion is your call, but here is a recent study that shows it is prudent to do so, and if you would, it would be recommended to visit a Center of Excellence regarding HCM. http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-researchers-demonstrate-value-of-second-opinions/

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@tkterrell

Hello all. I was recently diagnosed with HMC (obstructive). I am 41 and have never been diagnosed with a heart murmur or any other heart problems before. I’m still in a bit of shock I guess. My only symptoms were being out of breath when I recently trained for a 5K. (I thought I was just out of shape). I have moderate to severe thickening of the left wall. I did have genetic testing done which came back negative?? Leaving me even more confused as to how I came to have this. I have only seen a local heart dr. Who assured me I am at “low-risk” for sudden death but did put me on Metatropol and regular checkups. I guess my concern is if this is enough…

I’ve just found this group and will be researching others who have negative genetic testing and similar stories. I guess my biggest fear is if I should have a second opinion or just go live my life like my Dr. said.

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Hello @tkterrell,

I can only imagine how worried you must be with this diagnosis! Before anything else, I’d like to welcome you to Connect and want you to know that you have joined a wonderful, supportive community, ready to share their experiences and insights which will, I am certain, help alleviate your worries.

I’m tagging fellow Connect members, @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos, to bring them into this conversation about hypertrophic obstructive cardiomyopathy, and hopefully address some of your questions and concerns.

Here is more information from Mayo Clinic, about HCM: if you click on this link, http://mayocl.in/1GGdGn4 you will see a number of informational videos, treatment options, patient testimonials that might interest you.

@cynaburst, @ronaldpetrovich have offered very valuable suggestions, and shared their insights about genetic testing; I would sincerely encourage you to also view this live discussion that took place recently, in which Steven Lester, M.D., cardiologist, at Mayo Clinic, Arizona. talks specifically about hypertrophic cardiomyopathy & genetics:
#MayoClinicHeartChat about Hypertrophic Cardiomyopathy & Genetics: http://mayocl.in/2nTVJQs

@tkterrell, being diagnosed with HCM can cause some difficult emotions; how are you managing your stress level? What lifestyle changes has your doctor recommended?

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Hi, I added my profile ..Not sure if I’m hooked up right.HCM is my prob. My user name is fitchizumi saw it on member list but now I don’t.

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@fitchizumi

Hi, I added my profile ..Not sure if I’m hooked up right.HCM is my prob. My user name is fitchizumi saw it on member list but now I don’t.

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Welcome, @fitchizumi. I can see your profile here: http://mayocl.in/2tx2mJX. To see your profile or anyone else’s profile, simply click their @name. In your bio, you mentioned that you’re having trouble with meds. Are you managing HCM with medication at this time? What issues are you having? Is surgery an option for you?

Liked by Jamie Olson

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@fitchizumi

Hi, I added my profile ..Not sure if I’m hooked up right.HCM is my prob. My user name is fitchizumi saw it on member list but now I don’t.

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Yes I have lots of drug allergies . Yes a blood thinner and verapamil 120mg. It’s been changed lots of times.Exhaustion all the time.
Don’t know about surgery. Dr. Said something else would kill me. I might be to old plus I have other health problems some long term chronic.

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Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I’m sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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60 yr old diagnosed 3 yrs ago. Mild symptoms and currently on zero Rx. I would like info on where & what specific genetic tests I should have done. I assume blood can be drawn anywhere and shipped to testing lab. What lab & what tests to help my children be evaluated?

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