HCM-ers: Introduce yourself or just say hi

Hi! I'm Kerry. I was first diagnosed in January of this year. I was referred to Mayo (Rochester) by my cardiologist to rule out cardiac sarcoidosis. My EF is 33% on the left and 74% on the right. The sarcoidosis turned out to be Non-Hodgkins Lymphoma. I also have stage 2 chronic kidney disease and at the end of July I discovered I have 6 large, deep ulcers with H. Pylori infection. I've been reading several of the questions and comments and look forward to learning more about living with this disease. Unfortunately my insurance won't allow me to continue my treatment and care with Mayo so I have to get acquainted with a new cardiologist (Sept 2). It's been a little overwhelming to learn so much at once, but I've been through that before...and before internet...when my daughter was diagnosed with a brain tumor when she was 6 yrs old. I was much younger then and ready to help her fight for her life back then. As her caregiver for 33 years, I've grown tired and older. I'm well educated but sometimes I feel like my brain is paralyzed and I just can't think clearly. I struggle with simple paperwork tasks and remembering things. It is a lot to adjust to. For me, the hardest 2 things are my inability to think clearly and the physical limitations, especially with the heat of the summer. So anyway, that's just plain me!

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.

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.

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.

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!

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.

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:)

Best of luck and again keep the close conversations with your HCM specialist!