HCM-ers: Introduce yourself or just say hi

Posted by Colleen Young, Connect Director @colleenyoung, Oct 25, 2016

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 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?

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Cynaburst, Alumna Mentor | @cynaburst | Nov 23, 2017

In reply to @jhoffmanj "Hi Jim Hoffman here. Have gone from marathon runner to barely able to walk around the..." + (show)

Are you being treated for your symptoms? It sounds like you could definitely use some help. Have you been seen at the Mayo HCM Clinic or any other HCM center?

mehlisue | @mehlisue | Nov 24, 2017

I have introduced myself already but did not know where to post on thread of my post surgical of HOCM. I am three days past. Wow pain and very short of breath. The hardest thing to do is cough to clear the lungs. Best suggestion I can give is your respiratory care helper. Become their best friends. Pain levels are holding around 8 on day three but pain meds are helpful. Do not try to be a hero. Use the pain relievers. As long as I am not in pain, I can slowly walk with a walker and get myself up to potty. Eating is off. Can drink well. bowls a issue. So how did surgery go? Well I am so thankful I did not put it off anymore. I was obstructed more than thought. 80% is scary. Dr.s thought it was 69, Lesson here, the drs do not know what they can know until they put their eyes on the inside of your heart. Valves fixed as well as could be. a slight leak left on the mitral valve. It was necessary in me to get out quickly as the body was stressing. Daily there a good times. Without the drugs to push forward, this would be misery
.

jshah | @jshah | Nov 24, 2017

In reply to @jshah "Hi Has anyone got the MAZE Procedure done with the Septal Myectomy surgery? If you did..." + (show)

Hi Kanaazpereira

Thank you for your reply. My husband also has Afib and I guess for that reason doctor's were saying may be u should do MAZE Procedure as well. It seems like there are side effects to that. I wanted to see if someone did this procedure and how do they feel.

How are people dealing with stress and fear of surgery??? We have 2 little kids and I am freaking out...what is the worst that can happen. My husband is scead too but he is not saying it out loud but I feel that..

tkterrell | @tkterrell | Nov 24, 2017

In reply to @cynaburst "Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one..." + (show)

@cynaburst

Hello everyone and welcome to the new HCM Community on Mayo Clinic Connect. I am one of the mentors here and got involved with Mayo Clinic and its HCM program when I traveled to Mayo over ten years ago now to have a myectomy. I was so impressed with the treatment I got at Mayo, and became so convinced of the importance of being treated at a specialty center, that since then I have worked to spread the word about how to live well with HCM. The most critical thing is, whether you need surgery, or medical treatment, or anything else related to HCM, having a team that is knowledgeable about HCM is so important.

As far as my HCM story, I have a long family history with HCM. I lost my grandfather, uncle and father to the disease. I have had an ICD for 14 years, and had a myectomy 10.5 years ago. I had my son knowing I had the disease and my father lived most of his life with the disease, so I have pretty much lived through or witnessed just about every stage of HCM. All of these experiences led me to create two blogs about my experiences with HCM and to help educate patients about it.

The first blog: http://www.cynthiassummeradventure.blogspot.com is about my myectomy experience at Mayo Clinic. At the time it served as a updating tool for my friends and family, but since then it has helped lots of folks learn what to expect as they prepare for myectomy.

I recently created http://www.HCMBeat.com which is a collection of resources about HCM as well as news of interest about the disease, new treatments, people living with the disease, etc.

Anyway, that is about it for me right now. Please join the conversation and tell us about you and your HCM story. We would love to hear about you and your own experiences. One thing that I have really learned while navigating HCM myself is that it makes such a difference to have others who have been there before to guide you along the way and help you feel less alone. Through my interactions with other patients, I had the strength to seek my myectomy surgery, I have learned about the disease and how to live best with it, and many other common sense tips that have made a huge difference in how I successfully live my life today.

I hope that this community will do the same for someone else so the word will continue to spread.

Welcome all, and I hope to hear more from you.

Cynthia

Jump to this post

Hello, this question may have been asked and answered, but I didn’t see it. I live in Mississippi and was diagnosed in Feb ‘17 with HOCM. My local family doctor has suggested I see a specialist as a proactive measure. I have had an echo and electocardiogram from our local cardiologist. Where would you suggest I go? I follow another group that list the HCM Centers of Excellence but I just don’t know where to begin. Any input is appreciated.

thiles | @thiles | Nov 25, 2017

In reply to @colleenyoung "Hi Connect HCM-ers @cynaburst @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @rmcmillan @lepadelford @catiemorris @wandikarnadi @barbararickard @FrancineFafard @lisa7 @lucindag..." + (show)

I have just been informed I have HCM. The genetic testing was positive. Waiting to here from Doctors. I switch to the Mayo Clinic on Oct 23 2017 after going through a stroke 5 years ago. Then 2 years later I had a SCA was shocked 9 time by EMT's. Had a ICD implanted at this time, and since then I have been Shocked 15 times in the last 2 years by my ICD.

thiles | @thiles | Nov 25, 2017

I have just been informed I have HCM. The genetic testing was positive. Waiting to here from Doctors. I switch to the Mayo Clinic on Oct 23 2017 after going through a stroke 5 years ago. Then 2 years later I had a SCA was shocked 9 time by EMT’s. Had a ICD implanted at this time, and since then I have been Shocked 15 times in the last 2 years by my ICD. I look forward to learning more from others who have been there done that.

harrybare | @harrybare | Nov 25, 2017

Hi Colleen, I am interested in the stem cell program at Mayo. I am a resident of St. Augustine, FL. I heard about the success of your stem cell
program at Mayo in Rochester, MN. Do you have a similar program at the Mayo Clinic in Jacksonville, FL? On November 8, I had a
complete rupture of the quadriceps tendon just superior to the patellar insertion with 9 mm tendon gap. I am a very active 79 year old who,
until November 8, played competitive basketball in tournaments. According to the doctor, surgery would drastically reduce my chances of ever
playing competitive sports again.

Justin McClanahan, Moderator | @JustinMcClanahan | Nov 25, 2017

In reply to @harrybare "Hi Colleen, I am interested in the stem cell program at Mayo. I am a resident..." + (show)

Hello @harrybare,

First, I'd like to mention that it is inspiring to read that you are still playing competitive basketball at 79. As a person who has a competitive drive himself, I can only hope that I am still competing in any sport at that age and will strive to do so.

You asked Colleen about the stem cell program. It may be worth it to check out the following information about the stem cell Consult Service http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service. Or simply call 1-844-276-2003 to speak with one of our experts. I recommend calling this number as they will be better suited to answer your specific questions.

harrybare | @harrybare | Nov 25, 2017

In reply to @harrybare "Hi Colleen, I am interested in the stem cell program at Mayo. I am a resident..." + (show)

Justin, Thank you for responding. I will call Monday.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Nov 29, 2017

In reply to @mehlisue "I have introduced myself already but did not know where to post on thread of my..." + (show)

Hi @mehlisue,

Thank you so much for taking the time to follow up after your surgery; I'm certain your insights will be much appreciated by @choochoo @tkterrell @lottyfeeble21 @lina2017.

I'd also like to introduce you to @barbararickard @vialox @lynnkay1956 @PatMattos @Sensation @ronaldpetrovich @lepadelford @wintergirl8 to name a few. Many of them (if not all) have had surgery, some recently and some a while ago.

@mehlisue, you've been through a lot; having such a major surgery is not easy! How are you feeling now? Do you think that undergoing surgery was well worth it?

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