Hcm/hocm
 

As someone with asthma and ARDS, I already faced obstacles in my diet and exercise. I managed to overcome a great many obstacles and prove all of my doctors wrong when I was told I should file disability back in 2012 (I am only 30, BTW) due to the condition of my lungs after a really nasty life or death episode. I pushed myself, went the extra mile, the extra lap, the extra pounds. I went from passing out just walking from my bed to my couch to running 2-3 miles most days, and upwards of 5-6 on some. I kept my inhaler nearby and my O2 tank by the bed. I couldn't lift 5 pound weights and just last week, I benched 90. I thought I was doing my body good. I thought I was queen of the world and a true inspiration to any and all.

Then, came Monday. I cannot express how your world changes, how empty you can feel, how isolated, alone, and afraid you can truly be with just a few words. "You have HOCM," he said. I don't think it registered at first. In fact, I know it didn't. I had never heard the term prior to Monday. I had gone to the cardiologist as my pulmonologist was trying to pinpoint a more permanent diagnoses than ARDS and referred me due to a "slight murmur." Everyone said it was probably nothing. I had my EKG and went my merry way. I got a call from the lab tech telling me that I didn't have any leaky valves and my heart wasn't enlarged and to just keep my follow up appointment. I was blind sighted when I heard the news. I simply wasn't expecting to hear anything but "Great job!" Instead, I was told to "slow it down," and "immediately stop weight training," and "drop down to 2-3 days a week on exercise." He told me I will likely go on Beta-Blockers. Prior to Monday, I truthfully had no idea what those where for. Now I know.

Then, he threw the really hard ball at me. I have asthma. AND I have HOCM. Beta-Blockers and asthma don't do well together. Few more tests to determine true extent of this genetic disorder and be prepared to discuss possible surgery.

I'm only 30.

That day, just a few days ago, completely changed EVERYTHING. Here I had thought I was getting healthier. I had thought I was doing my body good. I thought pushing myself just one more step was the way to go. Come to find out, I was being REALLY stupid. I've spent so much time trying to get better, stronger, healthier, and all I was doing was putting stress on my heart that could have killed me. I suddenly realize that I will never truly be healthy, no amount of exercise or diet can make it happen...but it can make it worse.

I've looked around. It's hard to find a lot on the disorder. Even harder to find information in regards to diet and exercise with the disorder. So, I am reaching out to you, the net's largest group of dieters. Who here has HCM or HOCM? How do you cope, what do you do, and how do you continue reaching your fitness goals. Inspire me. I desperately need it. And if I need it, I know someone else does to.

So...maybe I am the only one. :(

Hello Zoe's mom!

I also have HOCM, and have had this diagnosis for over 11 years. I always had a murmur, but eventually was diagnosed with HOCM. I do not have asthma but I have heard many with HOCM have been incorrectly diagnosed with it at some point.

I would recommend you visit 4hcm.org and contact Lisa at the organization to discuss your treatment and cardiologist. If you aren't already seeing a doctor within a center of excellence for HCM, she will likely recommend you do.

Many cardiologists really are clueless to this disease and will steer you wrong.

As far as exercise, I work out doing cardio kickboxing, light weight training (no holding the breath or grunting) and other similar activities. I also do have an ICD implanted and take beta blockers and Pradaxa to prevent stroke.

Good luck!

THANK YOU for responding!

I have results from all my many many many tests on Tuesday to find out the true severity of it, at which time I am going to ask to be referred to Emory, which is an excellence center for HOCM. Unfortunately, I REALLY do have asthma. I have had all the pulmonary tests, have MRI and X-rays showing scar tissue damage on my lungs, have no functionality on my upper left lobe, and cough up "castings"...which are really gross and look like little "trees", something only a true asthmatic can do. :( I find I get dizzy easily and weak and tired...but I always assumed it was it was normal for me, especially since I am an asthmatic.

I'm going to check out 4hcm. I briefly looked at it, but got scared, truth be told. I was prepared for ANY diagnosis that involved my lungs, but being told my heart was bad too...I broke. I don't think I have ever been this...damaged. Such a mind flop.