Food and Weight: An Ongoing Journey

A Post I’m Not Thrilled About Making

Posted on: August 19, 2013


For the next little while, this blog is changing direction a bit.

It will still be about my health, but it will now be about getting my health back. One reason I haven’t been blogging much was that I’ve been really tired.

Well, I finally went to the doctor about it. He suggested that I see a cardiologist, because my heart murmur was sounding much more harsh than usual. The cardiologist decided that I needed to have a thoracic echocardiogram. So I trucked in to Mount Sinai and got one (and a thank you to Nancy T for meeting me and driving me home). Saw the cardiologist again this past Wednesday, and he had some answers. In fact, he had a lot of answers.

It seems that I have a genetic heart defect – one wall of my heart is much thicker than it should be. Dr S. (the cardiologist) told me that when you hear about athletes dropping dead for seemingly no reason, this is often the reason why. He also told me that it was very unusual for it not to trigger until someone’s 60s; it normally kills people way before they get to 60, like in their teens and twenties. He also says that it’s likely the reason I haven’t been able to maintain weight losses is due to the heart issue. Same for the BP issues.  He also asked if I had any living siblings. When I told him I had a sister, he had me call her while I was there, so he could explain to her that she needed to get tested for this defect, too, since it is genetic. After they were done talking, she told me that she had been having breathing difficulties for a year, but her doctors had been attributing it to her pernicious anemia. Dr. S. even gave me an extra copy of my echocardiogram, so that I could give it to my sister to give to her cardiologist so he’d know exactly what to be looking for.

We then discussed what had happened to trigger the problems. It seems that the furosemide they were using to keep my ankles from swelling was causing my heart to work sufficiently harder.

Anyway, we then discussed various treatment options. I do not, thank the gods, need a defibrillator at this point, because I am not light-headed, nor do I pass out. I’ve been taken off the furosemide, and if we start seeing the changes the cardiologist wants to see, the next step will be changing my BP meds to remove the diuretic. It means I may have to deal with ankle edema for a while, but if we can get the symptoms under control medically that would be good. Anyway, after that, we are going to ramp up the carvedilol, and something else he is giving me called verapamil. He would like me to be taking the highest safe levels of those two drugs. Since the verapamil does not interact well with the simvastatin (cholesterol), the simvastatin has been changed to prevastatin. Anyway, we figure to try the medical therapy for six months or so. If it doesn’t work, there are surgical options, but we are really hoping to avoid those.

The good news about the whole thing is an odd little bit. If this thing kills me, it will be sudden, quick, and relatively painless. This is good for several reasons: the one death that scares me is a long, drawn out one that drains all the friends and family caring for me. Further, We probably have caught it early enough to prevent that from happening. the other good news is that since I have been off the furosemide, my voice seems to be starting to come back a bit.

However, it’s still scary. While I will be getting back to walking once the condition is stabilized, I will possibly not be able to get back to the level of walking I love.

The main thing, though, is that I now have some answers. They are not all answers that I like, obviously, but they are answers.

And since this blog is about my health as well as my weight, this is where the blog will be going for the next while. If you want to opt out, I understand. Not everyone wants this kind of a ride. If you stay, I promise to be as honest as I can, and to keep you in the loop.

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10 Responses to "A Post I’m Not Thrilled About Making"

Thank you for sharing your story. I wish you well and hope your doctor can help you with this condition. By reading your story, I am having my husband check with his doctor about his heart. He has symptoms like you describe and there is family history with the heart.

Bless you dear,
Dori

Always better to check and get it ruled out, if possible. Glad I could give you a clue, though.

*hug* still reading and caring!

*hugs* Thanks, Judy. For years, I’ve watched you face health crap with courage and grace. Thanks for showing me how to do it.

I’ve been wondering what was up with you. Your problem sounds very similar to one my father lived with for years. My brother and I were screened when we were still in high school, and I was screened again several years ago (thankfully negative, so far). IIRC, he eventually had interventional treatment – a partial ablation of the affected muscle via a cardiac cath. It seemed to work very well for him.

Heya Melissa!

Thanks for the information. We are hoping to avoid having to do the surgical intervention, but it’s good to hear that it is effective. I’ve been kind of being a hermit for a while, as I was getting sicker and more tired. Plus, what energy I’ve had has been mostly going into work. I’ve had plenty of writing to do since I got out of the hospital in February, which has been a Good Thing. In fact, I may have almost made a human income this year. I’ll give you a call during the week.

Speaking of genetics and age catching up with you – as I type, I’m waiting on a glucose tolerance test, as my annual screening bloodwork this past weekend showed a slightly elevated blood glucose. With that, and some symptoms I’ve been having, the doctor & I decided that screening is in order (fasting BG, fasting insulin levels, and the glucose tolerance test).

The good thing is ill know the results of two of the three before I leave the office.

Good luck with the glucose tolerance test. Let me know what happens.

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