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.

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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?

@predictable

Hi, @estefania03, glad you dropped in with us at Mayo Connect, making you and me a party of two facing similar problems. I tend to suspect that hypertension is the cause of your family's cardiomyopathy, because your dad's situation and mine are similar, and I'm a 45-year practitioner of antihypertension therapy.

I had some difficulty qualifying for a new life insurance policy back in 1974 because of high blood pressure, then began round-the-year medical therapy for it 10 years later (age 50). After 20 years of fairly ordinary medication, my new HMO took a good look at my heart and found asymptomatic hypertrophy (their diagnosis was LVH as well). Other symptoms emerged over a few years, and the HMO referred me to a nephrologist, because my hypertension seemed not to be mainly a heart problem that would be relieved with the old medical protocols. My nephrologist diagnosed that part of my problem is Liddle Syndrome, a genetic mutation of the kidneys causing them to slough off potassium, and she solved that with a potassium-sparing diuretic. Then the cardiology team started looking at my heart again. We ran through all of the popular tests, except cardiac catheterization, confirming my cardiomyopathy but deferring therapy for want of significant symptoms.

Along came atrial fibrillation about seven years ago. It felt asymptomatic, showing itself only on my EKGs and blood pressure readings. But standard therapy with A-fib calls for an anticoagulant to prevent blood clots. I chose Coumadin for two reasons: 1) it involves regular lab tests monthly and 2) there is a ready antidote for it in emergency situations. By good fortune, my A-fib has never rattled my chest or caused any discomfort there. But it hit me the other way — a small blood clot, apparently formed in my heart, blocked a capillary deep in my brain, causing a "small stroke." Physical therapy has helped overcome the stroke symptoms, and I feel rather normal now without any sense that my heart is working extra hard to overcome the resistance of the thickened ventrical walls.

My medication is different in only one respect now: I take Carvedilol, a beta blocker, to steady my pulse and ease the power my heart needs to drive blood out in my system. Otherwise, its Coumadin to prevent blood clots, my potassium-sparing diuretic, and Lisinopril, a kidney medication for my hypertension.

I once thought I'd relentlessly pursue a cure for the problems of my circulatory system, whatever the cost or the inconvenience. I long ago gave that up and developed plans for anticipating what might pop up and threaten me, so that I'll know exactly what to ask for at the emergency room if my wife ever has to call 911 over my heart problem. Life is a lot more calm and predictable, except for the coronavirus that's taking over now. Martin

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Thank you for your reply Martin! It feels better knowing someone else is in a similar situation! You do sound like my dad, he too found out about his high blood pressure around 1970 when he was drafted and he failed the physical. He tried to sign up for the armed forces after he finished college but failed the physical again. He always had a bit of a weight and diet issue, and his siblings do have hypertension issues as well so I guess that does run in the family. I guess he never did anything about his blood pressure until years later. He, too, never had any symptoms of a thickened heart (he knew he had it from his echo done at age 50 just to see what his high bp had done), or any other cardiac symptoms, until the first time he had AFib at 67. He didnt know what was happening so that was what prompted the doctor visit. Now if he goes into it he can tell but it doesnt bother him enough to stop what hes doing. I think it wasnt until he and my mom moved down to South Carolina (where we are now) that he really got his bp under control (hes way more active now in the warm weather! Were originally from Ohio). I am glad that you were able to recover from the stroke, and that you have figured out what is working to control your blood pressure!! Thank you for chatting! Stay safe during the covid-19!

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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.

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@angiev18

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.

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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.

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@karukgirl

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.

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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

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@angiev18

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

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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.

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@karukgirl

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.

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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

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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!

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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!

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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?

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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.

Liked by angiev18

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@thecrawf3

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!

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You can make your own appointment with Mayo

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@rrowner2

You can make your own appointment with Mayo

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Thank you so much rrowner!

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The reason I asked about how you were feeling was because when you called them episodes it really caught my eye. I was first diagnosed in January this year with hypertension that I didn't know I even had. They did an EKG, an echocardigram, and found I had a heart murmur, left sided walls of my heart thickened but could not give me a reason for my "episodes". I described them as like an adrenaline rush that rushed from my hips, moved up my chest, then to my head. My blood pressure would go up, and also my heart rate, my legs get wobbly and weak, and I feel dizzy, sometimes it takes my breath away temporarily. They thought I was having anxiety attacks. I denied they were from anxiety. I can be just laying in bed watching TV or having a good time with my grandchildren. No exertion at all, nothing making me anxious. In Feb, diagnosed with HOCM, and in March A -fib. Im still having the episodes even though I'm now on medications for all of the above. I further pushed for more tests. They found a tumor on one of my ovaries and thought perhaps the tumor was secreting hormones into my blood stream and causing the adrenaline rushes. I had the tumor removed 18 days ago. Im still having the rushes. I was never told they could be from Afib. I know some symptoms are from HOCM, similar to those on this site but doctors think my heart is stable at this point. They sometimes last for an hour or so, sometimes 5 or 6 hours. After 4.5 months I'm exhausted from having them daily and just trying to find answers. So when you wrote, "episodes" my antennas went up and wanted to hear more and wondering what they felt like for you. Enough rambling for me. Thanks for listening. Hoping you are doing well.

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@angiev18

The reason I asked about how you were feeling was because when you called them episodes it really caught my eye. I was first diagnosed in January this year with hypertension that I didn't know I even had. They did an EKG, an echocardigram, and found I had a heart murmur, left sided walls of my heart thickened but could not give me a reason for my "episodes". I described them as like an adrenaline rush that rushed from my hips, moved up my chest, then to my head. My blood pressure would go up, and also my heart rate, my legs get wobbly and weak, and I feel dizzy, sometimes it takes my breath away temporarily. They thought I was having anxiety attacks. I denied they were from anxiety. I can be just laying in bed watching TV or having a good time with my grandchildren. No exertion at all, nothing making me anxious. In Feb, diagnosed with HOCM, and in March A -fib. Im still having the episodes even though I'm now on medications for all of the above. I further pushed for more tests. They found a tumor on one of my ovaries and thought perhaps the tumor was secreting hormones into my blood stream and causing the adrenaline rushes. I had the tumor removed 18 days ago. Im still having the rushes. I was never told they could be from Afib. I know some symptoms are from HOCM, similar to those on this site but doctors think my heart is stable at this point. They sometimes last for an hour or so, sometimes 5 or 6 hours. After 4.5 months I'm exhausted from having them daily and just trying to find answers. So when you wrote, "episodes" my antennas went up and wanted to hear more and wondering what they felt like for you. Enough rambling for me. Thanks for listening. Hoping you are doing well.

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Angie, you gave me chills, you described the episodes so much better than I did! That is exactly how they felt for me, the doctors never said they could be from AFIB, that is just what I think in retrospective. I can understand you being exhausted, I cannot imagine having them daily, mine were more like every couple of months, and that was miserable enough. It is so frustrating when you know something is wrong, and they can't tell you why. What meds did they give you for AFIB?

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Hi, I have HCM and I am going to have surgery in July. I am wondering about the recovery so I can prepare myself mentally and physically.

Liked by angiev18

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