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?

@colleenyoung

Thanks to everyone who contributed great questions to today’s webinar about HCM with Drs Schaff and Ommen. For anyone who missed it, you can watch it anytime here: http://mayocl.in/2rcdkDO

Hi @dtwgwen @rwhite1919 @stacysco @phileigner @onewholovesrock @jeffjonestn @77dhowell @lazell123 @meprahs4554 @janicepike @cstinecipher and @bluewillowskys great to meet you on the webinar. We invite you to introduce yourself to the group and take part in the discussions here in the HCM group on Connect. Ask questions, offer your experience and knowledge and tell us your story.

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Dear Pace, I had a septal myectomy for hypertrophic obstructive cardiomyopathy in November 2014. Despite the ordeal of surgery and recovery, I am so thankful that I went to Mayo Rochester. My mother was diagnosed with HCM when she was 61 and had an alcohol septal ablation. It was very ineffective, she survived to age 68 continuing to have symptoms, and had SCD. She did not have an ICD. I hope that you do. I have an ICD and I was diagnosed at 51 and I am now 56. I was the happiest person in the world to be going into the operating room, because I knew if I did not have the surgery I would not survive, I felt I had maybe less than a year. I am a registered nurse, and although I still have some chest and heart pain, I was able to return to work.
My primary reason for responding to you is that I did wake up INTUBATED. It was more uncomfortable, not really painful, just sore and of course VERY INVASIVE. Being a nurse, I knew immediately not to try to pull it out, they would have simply reintubated me. My oxygen saturation levels were very low. But the staff in CCU was very reassuring and kept me informed.
I now do yoga several days a week, and I wish I had had good breathing, relaxation, and meditation techniques prior to surgery, that I have developed in yoga. I don’t know the % of patients at Mayo who remain intubated after surgery. I can tell you that whatever your condition, or needs after surgery, they will make sure your care is outstanding. I knew they would not let me die. It is really the best medical care in the world.
I GOT MY LIFE BACK. IT WAS WORTH IT.
Please reply if I can help you.
Kindest regards and heartfelt best wishes for
you, Lisa

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@melissax3

Hi,
I’m Melissa and started out with HOCM with atrial fibrillation. I was cardioverted a few times and then had an Alcohol Ablation which did get rid of the obstruction but 2 years later it’s back. I am going to try it again. They say it happened because I have been taking strong medicines for 30 years. I had 3 kidney transplants. I just wanted to say hello and learn from you. Thank you!

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Hi @melissax3, I’d like to add my welcome. With the information you provided in your intro message, I’d like to let you know about a few other places you may wish to participate in.

Join others talking about HOCM here:
– Diagnosed with HOCM last year. May be time for surgery” http://mayocl.in/2ef1nMc

Meet other transplant recipients here:
– Transplants group http://mayocl.in/1qunnTn

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Thank you Colleen foe invitation. Hello everyone! Glad that was fortunate to find this group.
Hope to educate myself with your help and contribute with my story.
I am 52 male, who was diagnosed with HOCM 1 years ago. Frankly playing back my last 10 years can tell that gradually was loosing energy and developing HCM related symptoms like SOB, chest pain dizziness. At the beginning of this period I was able walking for 2 hours at 4.2mph (maybe longer), now 20 minutes of uninterrupted walk for relax and breath taking for 20 minutes at 3.3mph is considered as not bad. After Dx tried different Beta- and Calcium channel blockers. Very refractive to both, especially to the latter one. Now taking small dose metropolol (12.5mg). Looking for possibility of symptoms alleviation at Myo, since learn many good things about the Clinic’s Drs and Surgeons at Lisa Salberg’s HCMA site and Cynthia’s blogs.

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Dr. Schaff did my surgery on January of 9th. For my apical myectomy. He is wonderful. Lucky to have had him.

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Hello @vialox,

We’re so glad to have you here; If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63

In the meantime, I hope @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @lamborama @pbo2016 @mummy12 @mbcube will return with some information for you.

I also wonder if @murryone, @mikefox909, @slavinray, @hopeful33250, @mthomasb have any insights for you with regard to metropolol?

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@kanaazpereira

Hello @vialox,

We’re so glad to have you here; If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63

In the meantime, I hope @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag @23273333 @predictable @li @margie11 @fishinglady @uptodate68 @wandikarnadi @lisa7 @Komalin
@quinn @mistymopps3 @bibi12 @woodywood @lisab62 @debcrawford @lamborama @pbo2016 @mummy12 @mbcube will return with some information for you.

I also wonder if @murryone, @mikefox909, @slavinray, @hopeful33250, @mthomasb have any insights for you with regard to metropolol?

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Thank you, @kanaazpereira

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Hi @vialox, my father had a septal myectomy done 5 years ago at the age of 78. He’s doing fine and living a normal life now. It’s good to hear that you’re in touch with a high-volume center like Mayo and the community here where there’s so much information available. Good luck and good health to you!

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@vialox

Thank you Colleen foe invitation. Hello everyone! Glad that was fortunate to find this group.
Hope to educate myself with your help and contribute with my story.
I am 52 male, who was diagnosed with HOCM 1 years ago. Frankly playing back my last 10 years can tell that gradually was loosing energy and developing HCM related symptoms like SOB, chest pain dizziness. At the beginning of this period I was able walking for 2 hours at 4.2mph (maybe longer), now 20 minutes of uninterrupted walk for relax and breath taking for 20 minutes at 3.3mph is considered as not bad. After Dx tried different Beta- and Calcium channel blockers. Very refractive to both, especially to the latter one. Now taking small dose metropolol (12.5mg). Looking for possibility of symptoms alleviation at Myo, since learn many good things about the Clinic’s Drs and Surgeons at Lisa Salberg’s HCMA site and Cynthia’s blogs.

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Hey @vialox! Welcome to Mayo Clinic Connect. I am so glad that you made the decision to travel to Mayo for care. You will be so happy that you did. Where are you from? When will your appt. be?

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@vialox

Thank you Colleen foe invitation. Hello everyone! Glad that was fortunate to find this group.
Hope to educate myself with your help and contribute with my story.
I am 52 male, who was diagnosed with HOCM 1 years ago. Frankly playing back my last 10 years can tell that gradually was loosing energy and developing HCM related symptoms like SOB, chest pain dizziness. At the beginning of this period I was able walking for 2 hours at 4.2mph (maybe longer), now 20 minutes of uninterrupted walk for relax and breath taking for 20 minutes at 3.3mph is considered as not bad. After Dx tried different Beta- and Calcium channel blockers. Very refractive to both, especially to the latter one. Now taking small dose metropolol (12.5mg). Looking for possibility of symptoms alleviation at Myo, since learn many good things about the Clinic’s Drs and Surgeons at Lisa Salberg’s HCMA site and Cynthia’s blogs.

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Welcome,vialox, you will be so pleased with the care you receive at Mayo. They know this disease so well and are so patient centered, it is a pleasure to deal with them.

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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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@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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I called, and requested an appointment with Dr. Schaff, surgeon. They looked up my recird for my myocardiomyopathy, and scheduled me. I think it was 6 weeks out.

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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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It is easy to do it on your own. No referral is necessary. The one advantage of having your local doctor involved is that they are more likely to be supportive and helpful after the surgery. Most people continue to have a local cardiologist as well, since you need care at home if something happens and for check ups.

I was able to schedule my surgery and testing all in one visit, but that was because I was pretty sure a surgery was what I was going there for to begin with. If you go for testing and they decide surgery is indicated, they would refer you to the surgeon and then try to fit you in depending on the surgeon’s schedule.

Liked by janicepike

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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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Hello @vialox. The best way to get the answers to your questions is using this link to the appointment request information at Mayo Clinic, http://mayocl.in/1mtmR63. If you call one of the numbers provided, the appointment coordinator will be able to answer all of the questions you just asked!

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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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Isn’t this a forum to discuss?
This is the second time I have noticed the administration is guiding, and detouring specific concerns.

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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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Hello @janicepike, I hope my reply to @vialox did not come across as an attempt to stifle discussion. Vialox was asking specifically about the process in which to get an appointment at Mayo Clinic. The link I provided is a direct link to the appointment information for Mayo Clinic. I only meant to provide the quickest route to the answers vialox was seeking specifically regarding the appointment process.

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