HCM-ers: Introduce yourself or just say hi

Hi Jim Hoffman here. Have gone from marathon runner to barely able to walk around the block. Sound bitter? Yes a bit. I am 81 plus and I guess I should be thankful that I am currently getting up each day. I will try to be more cheerful in the future.

Hi

Has anyone got the MAZE Procedure done with the Septal Myectomy surgery?

If you did the MAZE Procedure how was it and are there side effects????????? please help with this question..

What is the worst case scenario is the Septal Myectomy surgery?

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

Hi Connect HCM-ers
@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

I'm tagging you on this message to invite you to follow the new Hypertrophic Cardiomyopathy (HCM) group on Connect. Please drop a note to say hi and introduce yourself.

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.

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.

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
.