How good or bad am I supposed to feel?

[Bucky]

My disease progressed to the point where I was seeing all the standard symptoms of HCM.ie, a) shortness of breath, b) palpitations (sometimes when sitting in a chair or laying in bed, but often associated with just walking a little faster than normal down the hall, c) chest pains, d) syncope., etc.

I even had some symptoms associated with CHF including burning leg muscles on walking (lack of sufficient Oxygen??) and a couple of times blood tinged sputum (fluid situation in lungs due to poor heart action)

I am now taking 360 MG of Verapamil. My Dr. is not an HCM expert, but has three HCM patients he is currently working with. He acknowledges that seeing an expert would make him feel more comfortable and would be good for me. So, I am trying to make that happen now at UCLA (thanks Lisa)

So, after all that......there is my question:

JUST HOW GOOD SHOULD I FEEL WHEN (AND IF) WE GET THE MEDS FIGURED OUT.

That is what I am struggling with. I feel a little better on Verapamil. I can walk around the block....slowly. But, I still have some palpitations and I still get short of breath at different times. (The shortness of breath thing is strange. Sometimes I can do an activity and I won't get SOB. Other time - even the same day - I can do the same thing and get SOB)

SO YOU ALL.........WHAT SHOULD I BE LOOKING FOR IN TERMS OF IMPROVEMENT? ....JOGGING AROUND THE BLOCK? CESSATION OF ALL PALPITATIONS?, NO CHEST PAINS, ETC.

How will or will I know when the meds have reached their max effectiveness?

I realize there is not a single answer to this question, but I look forward to the input from people who have been there and had to deal with figuring out when they were feeling as good as they were going to feel on meds.

[Pam Alexson]

Bucky Or Doug..is bucky your nick name? My dad's Bucky also! He is a Robert ( real name).

...Well , to answer your question ..IT can be very individually specific. Some will have a great positive effect from meds once their bodies adjust but, that effect of med scale can go right across the spectrum. This is why it is so good that you are going to see an expert in HCM in LA. A lot of us start with a beta blocker having it increased until maximum effect is obtained and then sometimes a switch may yield a better beta blocker for them. Calcium channel blockers may be added to the beta blocker as the second line of defense but I have heard them as first line. We are all different and therefore reap different effects. When I was obstructed I could not tolerate verapamil or for that matter any CCB. I was at a very high, well above recommendations of BB and it held me fair, a variable fair to poor effect, til myectomy.
My symptoms had me barely able to function from day to day and also had me taking exorbitant amounts of diuretic and potassium, just to exhist and keep the fluid in control. All the symptoms you report were mine also, and became daily and consistent. Meds did not work over time and life was slipping away. I resigned myself to the approaching end and welcoming it privately . I was very uninformed back then and the fact that my doctor was saying there was no help for me .. well, I felt there was nothing left to do. WRONG! WRONG! I called Lisa , got the book , believed, initially, reluctantly, as she suggested that yet another opinion , (number 2 now) at another top notch Boston hospital, may offer a new insight for me. SHE WAS RIGHT! YEAH... LISA, YEAH... DR MARON.... YEAH... Tufts NEMC and DR RASTGAR!!!. They saved me.. AND I AM NOT EXAGERATING.

When you get to LA a new and the best plan will commence. For now hang in there and try to keep your faith and hope that all will get better.

Life is truly different if they can operate and remove an obstruction if that is what is needed and the changes in meds can help. The disease and symptoms after effective, properly managed treatment/ intervention may be miniscule to non- limiting.. There may still be issues but all should be manageable.

The HCM heart is complex and different for each ..but it is treatable and if not, then the person gets on the transplant list if there is nothing that can be done to help. I know that now and the fact that the other doctor said he could not help me, that there was not safe available technology for my HCM heart should have led me to be put on the transplant eval list immediately. I now am aware of that. THANKFULLY Lisa came to the rescue for me and a myectomy gave me back the best use of this still problematic but, still functioning well enough, HCM heart of mine.

During that very tough time of mine I contemplated the simple things in my life and began to change the way I looked at life,and what I could be happy to retain all the while I held fast to my love of life and family. I worked hard to keep my sense of humor and my positive thinking that I would survive. Welcoming the end was not realistic for me and it is hard to remember how horrible it was back then and so not like me to have me thinking that way ..it was a fight and I battled hard , probably should have talked to someone professionally then, and I would always recommend that to you or anyone struggling. Keeping it in is not and was not good .. I get ulcers now. Slipping away quietly and slowly was emerging as a reality that I never could have believed would happen to me before I was 50. I guess I had a destiny and am very thankful I was able to see the flicker of light and kept hearing my son's sad, sad voice repeatedly in my head, as he begged me to make a call to someone anyone. Being ever so humble ...I picked up the receiver of the phone and called the HCMA....

I hope my sharing has helped. Remember there are many of us here who have had to journey down the rocky road you are now on. Believe me it will get better and manageable with the best treatment. I am not saying we love it or even like it. We just are happy that help is available to make some differences, some very important and life altering differences. We have the best group of helping people( all the experts are at the top of my list) that anyone could find to share HCM with and to make the difference.

There will be good days and there will be bad days. When treatment is effective the good SHOULD far out number the bad. Hang onto that.

Pam

[mbcube]

HCM is a dynamic problem and will vary day-to-day hour-to-hour as you have seen. I went from a month at 50 mg a day altenolol to 200 and I now feel the same (so the meds aren't doing what we'd hope). This leads to the surgery discussion. But from what I've learned from the hundreds of surgery survivors here on the board, its like night and day and that gives me hope. I should mentioned that I THOUGHT I was symptom free before all this started, and have learned that I was just adapting and ignoring the obvious.

Talk to your doc, listen, learn. Eventually you understand what is right for you.

[Cynaburst]

Doug - I have asked this question often. I think that sometimes we think that we have to accept the glass is half full and do the best that we can, but that sometimes there are things and interventions that can help us to improve from where we are.

First of all, I think it is reasonable to stop and compare yourself to the average guy who is your age and of similar lifestyle. Then, ask your doctor what it would take and what does he or she recommend to help you feet the same as that guy. It will, as I told you before, be a system of trial and error. One med might not work. You might have to increase the doseage a few times. You might have to add some meds, subtract others. It will take a while and be time consuming. Some symptoms may improve while others may worsen. Ultimately, the goal is to eradicate your symptoms totally, but this may not be possible.

Personally, I have done just about every treatment option that is available to me (or anyone) as I was feeling progressively worse, despite lots of different meds and doses. So, ultimately, when I could do maybe 1/5 of what someone my age should be able to do, I said enough, and made the decision to go to Mayo and have surgery. After the surgery, I was feeling much better, but still not perfect. I still have palpitations occasionally. I still have a little chest pain occasionally. And, I was still feeling like my exercise capacity was stunted. This was my biggest problem and I went back to Mayo who confirmed that my heart rate was blunted, so, I am now working with my E.P. to try to fine tune the rate response on my pacer. And that, combined with my myectomy, has helped enormously. But,no, I still don't feel perfect. But compared to where I was 1.5 years ago, I am improved like 90%. But I am still not sitting still saying "this is as good as it gets." If I have a problem or symptom bothering me, I voice it to my doctor. I have to argue with myself sometimes as I am sometimes inclined just to accept some symptoms and say, that is how it is going to be. And maybe it is, but I will die trying to improve to being the best I can be.

[Bucky]

Thanks Cynthia...you've always got good information. This is a great way for me to get a handle on this and not "FREAK OUT" like I want to do............I've got to look at the glass half full aspect of this not the other way. I am about 15% of where I was in May of last year...so I have a goal in mind. Step by step, one day at a time....I guess....I can't wait to see what happens next. This is now kind of like a detective story....but I don't know the ending.