Hi Angelia,
Welcome. You will find a lot of answers to your questions here, you just need to poke around a little. There is something comforting knowing you are not alone in your new diagnosis. It must feel frustrating to be such an active person, doing all the remodeling you've done, going from there to hearing you may need a septal myectomy! Fear is a normal response to hearing this, so you are not feeling anything abnormal there. I felt compelled to respond to you after I read your words "I'm scared, want my life back and feel alone with my symptoms." I would venture a guess all of us with HOCM feel just like you do! You ask for someone to share their symptoms, medications, and what if anything is helping.
Each person is unique and no two are alike, we all know that, but that being said, there are a lot of similarities we share in this diagnosis too. Short of breath with minimal exertion. Chest pain. Unable to do what used to be easy. Irregular heart rhythms. Increased symptoms after a large or high carb meal. The list is extensive.
I can share with you that I too was recently diagnosed at the Mayo Clinic in November 2019. I live in far Northern California in an area of incredible beauty. I'm a big time hiker. Lassen, Shasta, Whiskeytown. I walked 7 miles a day, hiked every week. And then I couldn't anymore. Something was wrong. I was misdiagnosed for several years. Until being my own advocate and finding my way to the Mayo. I was numb hearing the cardiologist tell me I needed a septal myectomy. I sent me off right then to Dr. Bagameri, the surgeon. He confirmed. Shocking! I was scheduled on March 20, 2020 to undergo this surgery, but alas, the Global Pandemic shut down the world and I had to postpone. I am now on for July 8. I asked the group for tips on getting thru such a brutal surgery and got so many wonderful responses. So for you the same is true. There is a lot of information here. You just need to search for it. The moderators are wonderful. They can guide you around and help you. You are on a journey you didn't see coming...and information is power. Learn all you can about this condition, listen to your doctors. Eat healthy and stay as active as you can. Covid 19 is not your friend, so take extra precautions out in the community. You are not alone. Your fear is normal, and with information comes power. For some, medication works. For others, it doesn't. Medication does not cure this, it controls symptoms. The Mayo Clinic is world famous for a reason. They are the best. Their opinion should be considered. But as is always the case, the decision is yours and yours alone to make. It isn't something to take lightly. I will be praying for you and wish you the best. Stay strong. Best regards.
Thank you for responding to my post. I have been to California once, back in the 80's. Annehime, CA top be exact just beautiful!! You liked to hike daily, I'm sure it is very difficult not to be able to move about in the outdoors as you once did. It's difficult having your body not respond like it always has, like it just shut down and in order to make it work again you have to go through some major surgery to even go for a walk around the block, drive a car, or like you drive a car. Similar to your story, my insurance fought to pay for treatment at Mayo's due to being out of my HMO. I called them every other day pushing for an answer because COVID 19 was starting to get more and more coverage on the News daily. My insurance finally approved treatment on a Wednesday and when I called Mayo's reported two days before on a Monday restrictions were now in place until further notice. Wow! I couldn't believe it! In the mean time, another diagnosis came my way. An ovarian tumor, possibly uterine cancer. I'm 14 days past removal of tumor which was a Brenner tumor, and was benign and uterine biopsies were negative. Recovering from surgery and next week have colonoscopy for positive DNR of cancer. Praying for a negative there too. I think alot of people are hoping and praying for a better second half of 2020. I know I am.
Do you have a surgery date yet? Are you going to fly to Minnesota and back after your surgery? Is it safe to fly after Septum myectomy? Is someone going with you? I wish you the best and hope your recovery is swift and as easy as possible on you.
I know you will be in the best of care at Mayo's. One of my nurses used to work at Mayo's snd was telling me about its history and how it started, so interesting a Sister and the two Mayo brothers who were doctors began this wonderful institution and since it began, there are Sisters that pray 24 hours a day, they pray in shifts for the patients, their family, the doctors, nurses, staff. From what I read, they still do. I found that comforting and wonderful to know.
Best to you, Angelia