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HCM-ers: Introduce yourself or just say hi
Hypertrophic Cardiomyopathy (HCM) | Last Active: 3 days ago | Replies (1105)Comment receiving replies
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.
Replies to "I have HOCM also. I had a myomectomy and removal of a sub-aortic membrane, which seemed..."
@nightnurse I read your post and certainly sit side-by-side with you.
@karukgirl is an amazing person, and really, I do not know anything about cardiac concerns. One thing that struck me was the mention of furosemide in your post. I have been using that for several years, and recently switched over to torsemide [another diuretic]. The careful thing is to balance your potassium and magnesium while on diuretics, since they will be depleted and possibly affect kidney function. As mentioned, it's all a fine line!
It sounds like you have one functioning kidney? I hope you can engage the thoughts and opinions of a nephrologist to work hand-in-hand with your cardiologist. A medical team that you can rely on [and remember, you are an integral part of that team!]
Ginger
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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?