HCM-ers: Introduce yourself or just say hi

You can make your own appointment with Mayo

Hi angie, thanks for your reply! I would feel the blood rush to my head, my heart beating fast,and just a horrible feeling like I was going to drop dead on the spot, one time someone took my pulse, and it was 160, usually by the time I would get to the ER the earth would have stopped beating so fast though, so they couldn't catch it on the EKG, these days when I do have an episode, only 2 in the last 2 years thankfully, they last for hours, even while they're pumping meds in my IV, the last one I thought I would die for sure. I understand that AFIB is different for each person though, and not everyone has bad/painful episodes.

My doctor referred me to Mayo's for HOCM, but I thought on the Mayo Clinic site I did see a place asking if you would like to make an appointment. You said that you went to the ER for what you thought were panic attacks but ended up being A fib? I was diagnosed in March with Afib. What were you feeling before you went to ther ED?

Still Rosaria here, I forgot to ask, can anyone make an appointment at Mayo? I have so much respect for them since I watched a Ken Burns documentary on Mayo clinic. Thanks!

Hello everyone, I'm Rosaria, I'm 65 and was diagnosed with HCM about 6 years ago. I really didn't realize how serious it could be for the longest time, my own fault, I should have done some research. I was diagnosed with AFIB shortly after, although I think I had had it for a while, starting in my early fifties I would often end up in the emergency room, with what I thought were panic attacks, but in retrospect I think it was AFIB episodes, if that makes any sense, I've been on meds for the past 2 years, and I've had only 2 episodes of AFIB since, but they were pretty bad, so I will probably have to start thinking about the next step. Sorry if this was rambling, I'm just so happy I found a group were people understand what I'm going through. Blessings!

So very sorry to hear of the loss of your Mother. How devastating for you and now your Father in hospice? Im sorry, I can't imagine the pain you are in. I will pray for you, also. I hope you have a good support system surrounding you. I truly am at a loss for words. I pray for blessings and peace as you go forward and for fast healing after your surgery. Angelia

Wow Angelia! You have a lot on your plate to say the least! You have faced so much already and still have more to deal with. You sound like you have a positive attitude and that will help you get through. I'm so sorry you have had such a difficult time lately. I'll keep you in my prayers that you heal from your surgery, and get through all the other things. If you do end up having a septal myectomy, you will want to be in the best shape emotionally and physically. So it sounds like it worked out the way it should not coming to Mayo sooner. They say everything happens for a reason. Take your time and heal yourself.
To answer your questions: Yes, my new surgery is July 8. When the pandemic shut down the World, we postponed it to July thinking Covid 19 would be in the rearview mirror by then. Who knew it'd still be hanging out there? I will be flying from Sacramento to MSP/St Paul with my significant other/designated bell boy. I asked this group of brave warriors about flying after a septal myectomy and the consensus was, yes, you can definitely fly. The folks on this sight that have gone through this have shared their experiences, and I can tell you, while each story differs, because we are all unique, their responses have helped me to not feel alone. I hope it helps you too. Before the Pandemic I lost my mom. The day before Easter I had to put my dad on Hospice, and four days later I lost my job at the hospital I've work at for 19 years. So what you said about those who pray are praying the next half of 2020 is better is so true...we all want things to get better. You take care of yourself. Best wishes facing your next challenge.

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

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.

Hi. My name is Angelia. I was diagnosed in Feb. 2020 with HOCM after landing in the hospital for uncontrolled blood pressure, heart rate, heart murmur. Up to being diagnosed nothing stopped me with my favorite hobby, remodeling my house. Wood floors, putting in kitchen sinks, tearing down walls. Yea, nothing stopped me. Took awhile, and multiple trips to the Ed to get the HOCM diagnosis, and then in March tacked on dx of A- fib. On Cardizem 360 mg, Metoprolol 100 mg twice a day and now Xarelto. Referred to Mayo Clinic by my cardiologist and Mayo Dr controlling my BP meds. Symptoms keep getting worse and now appears Septum myectomy will be the solution/treatment. Hello to everyone. I'm scared, want my life back, and feel alone with my symptoms. Could someone share with me the symptoms you experience with HOCM. Are meds helping with symptoms? Meds not helping? Would appreciate your feedback. Thanks.