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.
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.
Hello - stumbled across this Connect group and was impressed by the very supportive comments of moderators and members. Diagnosed with HCM about 5 weeks ago and, admittedly, still in a bit of a shocked phase but feel I'm getting good care. About me: I am a previously very healthy 50M (no meds, no conditions, active runner) and started feeling very lousy went to the ED and after a run-around of tests (angiogram in Cath lab, treadmill stress, finally CMR) diagnosed with non-obstructive apical HCM with small aneurysm (< 1 cm). Discharged on Metoprolol and they were able to get approval for an ICD quickly which was implanted 2 weeks later. Genetic test showed only a "variant of uncertain concern" - nothing definitive. Still feel brain foggy and moderate lightheadedness quite often but I'm back to work. Interestingly I work as a clinical pharmacist at a hospital so quite knowledgeable about the meds but just trying to understand more about the pathophysiology of HCM and especially additional risks of an aneurysm. I am receiving care at UCHealth which HCMA lists as a COE and have as my cardiologist their HCM specialist so hoping I'm in good hands there. I have 4 kids ages 10, 12, 12 (twins!) and almost 14 so a bit freaked out for what it looks like for them going forward. Would love to chat with anyone with aHCM about symptom management, triggers, etc (for me, heat seems to be quite troublesome). Wishing all good health and strong hearts!
Hi @jasonfromco, and welcome to Mayo Clinic Connect. I'm glad you found this online support group of fellow HCM/HOCM folks.
It doesn't surprise me that you are still in a bit of shock, especially with your active lifestyle. HCM doesn't care who it picks!
Couch potatoes, runners, bike riders, grandmas, teens, super athletes...it can happen to anyone.
It sounds like you are doing the best thing possible, which is finding out as much about this insidious condition and becoming your own best advocate.
Bonus: You are a pharmacist, you've got insider knowledge about beta blockers, calcium channel blockers, Disopyramide, Camzyos, and the host of other treatments cardiologist try to help alleviate symptoms with.
It is also good that you are getting treatment from a COE, which is such a positive thing.
So many of your fellow HCM'rs took years to correctly diagnose and finally be treated for worsening symptoms.
Having four kids you want to be around for would certainly weigh heavy on your mind now that you know what is going on with your heart.
Have you read this from the Mayo Clinic?
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Having a specialist at a COE is important, because you have additional concerns with the aneurysm you have to be mindful of.
No wonder you are still in shock!
I was a big time hiker. I didn't know I had HCM. The high elevations started getting worse for me. My legs would feel like lead, I'd be gasping for air...I knew something was wrong. Also on the occasions when I would indulge in dietary indiscretion, I would suffer for hours afterwards. Pounding heart. Tachycardia. PVCs. And walking up gentle inclines would make me have to stop to catch my breath. Those were my triggers. By the time I was finally diagnosed after being misdiagnosed, I had severe obstructed HCM, my heart was failing and I need open heart surgery. So I get the shock part!
I'm glad you found this site, and hope you get a chance to read some of the stories on here. @brumasterj is a fellow member who also was very active, and just had open heart surgery. If you get a chance read some of his posts...they will inspire you and give you more information.
Have you had a cardiac MRI yet? When do you see your cardiologist for follow up?
Jason, glad you found this site! Man glad you are getting seen by a COE and was able to catch this as fast as you did! We all have so much in common and you have every right to be freaked out by this!
Stay in contact not only with your cardiologist but as well with your primary care doctor! Together yall will all work at getting you back to your old self:)
Im 6 weeks into recovery from septal myectomy and just easing into spin biking this week to get me back on my mountain bike and hopefully running again:)
The attached you tube video explains so many symptoms i had before being diagnosed and years before being diagnosed i was talking to my local primary doctor and cardiologist about these symptoms, and continued to be misdiagnosed!
I live down in farmington NM so if you ever want to talk i would be happy to talk:)
Let me know what you think about this video it was so spot on and seemed like all the signs are there for health professionals to catch this but it is so easily missed!
I too have the same gene of unknown which they suggest all first line to have echo every five years till age of 60
Best of luck and again keep the close conversations with your HCM specialist!
Such a thoughtful and kind reply! Thank you! Yes the Cardiac MRI was the thing that led to the definitive diagnosis: Apical hypertrophic cardiomyopathy with small (< 1 cm ) apical aneurysm. No apical thrombus seen. Maximal wall thickness is 1.4 cm along the apical septum. There is patchy mid-wall late gadolinium enhancement along the apical to mid septum and apical inferior wall. This is in a non-ischemic pattern as can be seen in HCM. Overall LGE burden is intermediate (3% of the myocardial mass). Normal left ventricular function. Calculated LVEF: 64%. Normal right ventricular function. Calculated RVEF: 69%.
Love your comment that you would "indulge in dietary indiscretion" - For me: chocolate milkshakes!!! I doubt I'll ever be a candidate for any type of surgery (it doesn't seem that apical myectomies and aneurysm resection are common and certainly not performed near me) but am so happy that so many HCMers have not only been able to have open heart surgery but have recovered well. I am happy to hear it! Thanks again for your comment - lifted my spirits...truly!
A very nice video and worth a watch but my cardiologist said he noted no obstruction and/or outflow concerns regarding obstruction. It would see, on paper at least, that I should be in good shape: apical HCM with small (< 1 cm ) apical aneurysm. No apical thrombus seen. Maximal wall thickness is 1.4 cm along the apical septum. And. to be sure, I probably really don't have it all that bad compared to many but still feel lousy: I don;t really notice any palpitations, runs of Vtach, chest pain, SOB, etc but a constant wooziness & brain fog. I suppose it could be metoprolol related but it was present before I started taking it. I've had one with outpatient cardiologist (HCM specialist) and he kinda shrugged and said maybe anxiety...it's certainly possible but genuinely feel its not that. Anyway, sorry to have just dumped all this out there - still adjusting to all this. Your reply was very, very much appreciated and thoughtful.
I guess i should have read you original post a little closer! AHCM
Man you know your body better than anyone! Listen to it and be your own advocate!
Good luck with everything and i hope you get the answers you need and get it figured out:)
Hi Jason,
I am an 81f with ApHcm. I was not diagnosed until I was 78 at which time I was not taking any meds except levothyroxine for hypothyroidism. Was quite a shock for me so I understand how you were feeling. I was able to get an appointment at the HCM clinic at Mayo, Rochester. Have a wonderful cardiologist there. I also have a small aneurysm on the apex of left ventricle. My genetic test also showed a variant of unknown concern. You asked about aneurysm risk. That is why you have an ICD. My cardiologist says I am entitled to one but at Mayo they have found the risk of inserting one outweighs the benefit for those in their 70s and 80s. So, I opted to go with his advise and not receive one. I have 4 daughters. Three have been screened and my oldest daughter also has ApHcm. She was quickly given an ICD and currently is not on any meds. I was not put on any meds immediately because I had no symptoms except occasional palpatations. Then six months after diagnosis, Afib presented its ugly face. I was in persistent AF for six months before it was controlled. Long story, but several rate meds were tried to no avail. Lowered my BP quite low but didn't control rate or rhythm. Was referred to Mayo heart rhythm clinic (which took 3 months for appt.) and EP gave me options of rhythm meds or ablation. I asked his recommendation and he said he would start with meds so am now taking Dofetilde (Tikosyn) and it has done a good job. However I started having breakthrough episodes which converted on their own after about 36 hours and I am now taking Jardiance in an attempt to lower my filling pressures and potentially help with the breakthrough episodes. The only other symptoms I have had are moderate lightheadedness and occasional fatigue. Of course, the fatigue could be due to age. As I said, I am 81. I am active and walk 2 to 3 miles every morning. I also do exercises about 3 days a week. My daughter who has ApHcm works full time, excercises and lives a normal life. Live your life and be thankful you have good health care. Do get your kids screened with an ECG and an Echo. That is very important. My cardiologist said my kids should be screened every 3 to 5 years. Wishing you the best in this journey.
Well this was just the nicest reply! Thank you so much for sharing - I found your story to be reassuring and offers an excellent 'big picture' perspective. I wish you great health!
I have HOCM also. I had a myomectomy and removal of a sub-aortic membrane, which seemed to be more problematic than the HOCM in my case. I didn't know about any heart disease until the day I simply passed out at home, alone. I called my physician and I was told I maybe not need to go to the hospital if I was feeling better afterward. So I went to bed. However, as I was lying in bed, i had worsening knee pain from the collapse I had experienced. I could not bear weight, could not flex the knee, and also had a terrible cough. I asked one of my kids to drive me to the ER, where I was diagnosed with a soft tissue injury and pneumonia. Because I had lost consciousness, I was admitted and put on telemetry. While in the hospital, I had two more episodes, losing consciousness again, but now on telemetry, we had proof that my heart stopped each time, so it wasnt a fainting episode, it was asystole. I had the Heart cath done, where the HOCM was noted. I was to get a pacemaker implanted. That day I walked from the gurney to the cath lab table and lay down, but experienced another asystole, which means no heart pumping, so no blood getting to the brain. So I was on a very narrow table, not secured yet by any means, and had a seizure from lack of oxygen. It certainly scared the techs and nurses who were worried that I could fall off the table from the seizure activity. Again, my heart restarted on its own, and I came around again. But now it was crystal clear that I truly needed that pacemaker. Unfortunately, I have never really felt well since the diagnosis. I am now in heart failure because the heart muscle has thickened and become stiff, so it is not meeting the body's demands. And quite sadly, I also have Kidney disease, fairly severe. Those two conditions each exacerbate the other. You treat one, and the other condition becomes life-threatening. Hypoxic respiratory failure due to heart failure requires Lasix to get the extra fluid off my heart and lungs so I can breathe. But the Lasix that permits me to breathe further damages my one remaining kidney. We are at a point now where we may be forced to sacrifice the kidney and start dialysis just so that breathing is possible. At any time, a flair in the heart damage, a bad cold or flu, or pneumonia, and I could lose my life. Its not an easy thing to manage anymore.
Hello @nightnurse, and a warm welcome to Mayo Clinic's support group for HCM and HOCM.
I read your post and felt amazed at all you have been through.
It's just mind boggling.
And sad.
Treating one condition, only to cause another issue for a different condition must be frustrating at the least, and the fear of the future must weigh heavy on your thoughts.
One of our amazing mentors, @gingerw, also shares something in common with you. She has longstanding kidney issues and also has multiple myeloma for which she has chemo. It is a fine line she walks everyday.
No. She doesn't HOCM, like you, but she lives her life managing to maintain balance and find joy where she can, and she is such an inspiration. I hope you read some of her posts.
May I ask, have you had a second opinion anywhere?
Such as a COE (Center of Excellence) like the Mayo Clinic or Cleveland Clinic?
The Mayo is the leader in the world for the treatment of HCM/HOCM and takes the toughest cases that other facilities do not.
I ended up have three outside consultations for my HOCM, two were at COEs. Neither was close to my home, but I do not regret it. It lead me to the Mayo Clinic and I feel like I got a second chance of living because of that.
I have worked in hospitals for almost 45 years. I know how little ones and big ones operate. I've worked at a UC hospital before. I can tell you there is NONE like the Mayo Clinic. I've never seen anything like it before or since.
I'm don't want to sound like I am promoting only the Mayo, I am wondering if you have had a second opinion at a COE. Or even another if you had a second.
You have been through so much, and being in such a precarious place must suck the joy right out of you.
Do you have a hobby or favorite thing that makes you happy?