how do symptoms correlate w/ septal thickness/high gradient

[eatwell]

I'm curious about the varying types of symptoms as one gets closer to a need for septal reduction.

I read Eileen's post today (5 weeks post myectomy, glad you are doing well, by the way) that she struggled to make her bed pre-myectomy. That would suggest a high level of SOB.

My gradient is 159 and my symptoms are increasing and I have a lot of lightheadedness and periodic chest pain off and on. My increase in SOB is what alerted me that something was getting worse, but I can function decently with my activities of daily living (except vacuuming and pushing heavy grocery carts, always SOB). Don't like steps either. By night, I am very fatigued and just want to go to bed, but it seems overall I am managing through the day pretty well, or so it seems. I may not realize the amount I'm compensating or have forgotten what 'normal' is.

But, my question, am I not as bad as Eileen? Should I be that SOB before I'm really ready for surgery? Not that I want to wait, I just don't understand the individuality of symptoms.

Also, what's the chance of blacking out? I'm on atenolol but that's it. My lightheadedness has increased like I mentioned and my husband's fear is that I will black out while driving. I've not read much about this from others. Anyone know the likelihood? or what I should do to keep myself aware of a warning sign?

Thanks, Laura

[Reenie]

Symptoms are too individual to really say from one person to the next what you "should" be feeling right now. I do know that you can probably say you've forgotten what normal is. For instance, it isn't normal to be aware of your heartbeat or to feel pressure in your chest and/or neck. It isn't normal to feel lightheaded tying your shoes or to see stars. Those are a few symptoms that others here have when they've had a gradient, and some who haven't had one as well. I've heard more than one myectomy patient comment after surgery that they hadn't know how bad they felt until they felt better. Again, I'm not trying to scare you or push you into a decision that you don't need to make. I just know that a high gradient like yours needs to be lessened and if medicines don't do the trick, surgery may be right for you. Have you tried any other medicines to try reducing the gradient that way?

Reenie

[Cynaburst]

I think that this is an individual matter, and that you will not find a consensus about whether there is a "right" time to have a myectomy. Everyone's symptoms need to be evaluated individually. You do have a high gradient, so that is clearly one factor. Another thing to consider is how much your quality of life is being affected by the disease and whether you have tried all of the different medications that might help you, for example disopyramide or Norpace can reduce a large resting gradient. I am taking this now myself in the hopes of postponing a myectomy indefinitely, but I might reach the point where I feel that surgery is necessary.

Dr. Ommen of the Mayo Clinic told me at the meeting last week that the only objective test he relies on is an exercise test where he would compare your exercise tolerance to an average person of your age and sex.

My best advice is to go to a specialty center and get evaluated. Make sure your meds are maximized, and if they are, and you are still having noticeable symptoms that hinder your lifestyle, then go for the surgery. Eve a/k/a Eileen had unduly suffered for a long time before surgery. She admits that had she known of the options available to her, she might have had a surgery years before.

Good luck (and you do seem to be near Cleveland....check it out).

[mtlieb]

I do know that you can probably say you've forgotten what normal is. For instance, it isn't normal to be aware of your heartbeat or to feel pressure in your chest and/or neck. It isn't normal to feel lightheaded tying your shoes or to see stars.

So true... and I am still so amazed when I think about it. To be honest it even makes me mad sometimes. How is it that I spent 20 years of my life feeling my heart beating so loud in my chest all the time and thought it was normal??? How is that even possible???

Laura, as Reenie said sometimes we live with certain symptoms so long that they seem completely normal to us and it's difficult to see just how much they are affecting us. I like Cyn's idea of the stress stest... it is perhaps the only objective way of measuring where we stand compared to others. Regardless of symptoms however, your doctors will want to work with you to get that gradient down so it doesn't put undue stress on your heart and create more problems down the road. If drug therapy does not do the trick, a myectomy might well be your best option.

Jim

[eatwell]

I hope I didn't sound like I was willing to live with a high gradient and stall on a myectomy. I just haven't come to terms with my symptoms and what they are telling me. It's just that not all days are the same even though the daily activities are relatively consistent. The inconsistency of symptoms is rather perplexing.

But, I agree my sense of normal is probably way off. I'm not sure my family really realizes as is probably the case for most HCMer's. We live with things and just don't mention it/dwell, etc.

I talked to my cardiologist and he doesn't really want to give me Norpace due the h/o sudden death in my family related to the potential of pro-arrhythmic affects of the med.

I'm just trying to figure out how best to keep myself 'safe' in regards to symptoms while I wait for consultations on the septal reduction. That's why I asked about the potential for black outs due to the lightheadedness. I haven't seen much about this in the archives, but I'll keep looking.

Thanks, Laura

[Reenie]

You didn't sound like you're willing to live with the gradient in lieu of the myectomy to me. I was just pointing out that most with HCM, especially those who get managed care long after the onset of symptoms that they didn't really realize they had, can look back and say, "Oh yeah!!!" Most HCM'ers have good and bad days. You aren't abnormal at all.

Reenie

[eatwell]

Thanks, Reenie. It's good to know good and bad days, inconsistency is normal, for whatever 'normal' is. LOL

Laura

[momataz_911]

symptoms

I agree with the others it is sort of an individual thing for each person. I started feeling a tightness in my chest they it was just as if someone let the air out of a balloon when it would release. I had chest pains, SOB, dizziness, hated steps. I felt as if I would black out but never actually did. I did start to fall a lot. They told me not to do a lot of climbing stairs, bending over or squatting down.

I think you should probably sit down with your doctor and let him or her know what you are feeling. Be honest to them even if it seem like it really isn't all that important this is the way that they judge what needs to be done.

Keep us posted we are here for you any time you need us.


May God Bless

Christy