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  • surgery

    [surgery]

    Author: Susan Y (---.wab.kconline.com)

    Date: 11-28-02 20:03

    Hello All...Hmmmm where to start...I've posted before. I found and started reading this board several months ago. I'm 37, w/hocm, 3.0 septal, 67 gradiant and have a pacer. The past few days have been a whirlwind for me. I saw Dr. Lever on Mon. It seems so strange to me that for 20+ yrs I have delt with different symptoms and never been told I had any options. Then I go through the same tests with a specialist and for him to be so excited and tell me he can fix my problem. I was told several yrs ago that my septum was 3mm. But I had no idea that surgery was an option for me. And just recently my reg. card told me that my septum was only 2.1 and I wasnt that bad.( someone read the echo wrong.) I left his office angry, and feeling like it was all in my head. My greatest fear was that I was going to have the specialist tell me...I wasnt that bad. At this point in my life I do relatively little without being totally worn out. I can't even imagine feeling normal again. I'm not sure what it would feel like. I have been fighting off depression for years( for various reasons) but my symptoms havent made anything any easier. I think I have done less and less over the years just to avoid my symptoms. Lets face it how much fun is it to go shopping when by the time you walk from the parking lot into the store your exhausted, sob, a headache and your chest hurts. Some days I get sob just tying my shoes. At anyrate, I am scheduled for a myectomy on Dec. 13 at CCF. Part of me is relieved...at last. The other part of me is scared and angry. Scared because it is my chest going to be cut open. Angry because this disease has taken so much of my life away from me and my children and also from my family. My dad has hcom and I have watched his symptoms for over 20 years..thinking this is what is in store for me. (Not knowing everyone is so different with hcm.) I want to be an active participant in life again. I'm tired of feeling like I'm just existing....my children only have one living parent and I want to enjoy life with them. I thank God for the internet access to this HCMA ( without it, I don't believe I would have ever sought out a specialist )and Lisa's willingness to do all she does. Dr. Lever spoke very highly of you Lisa. Surely you are one very special lady. Sorry if this is too long. I need to vent tonight. I was impressed with the CCF and Dr. Lever, but there is alot of info to digest.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: surgery]

    Author: Sarah B. -Board Moderator (---.client.attbi.com)

    Date: 11-29-02 03:45

    Dear Susan,

    Yes, there is a lot to digest, but you are on the right road. The anger is natural, and please don't ever apologize for a long post or venting here ---that is why we are here!!!

    Use the search feature here to read all the myectomy posts (some are older than a couple months) and you will find a number of people who have gotten their live's back ( or a very large portion thereof) after their myectomy.

    You are in good hands at the Cleveland. Keep us posted on yourself and take it easy.

    We will all be pulling for you,

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: surgery]

    Author: Robert Hartwell (---.focal7.interaccess.com)

    Date: 11-29-02 06:15

    Dear Susan,

    My Myectomy was performed at CCF on November 11, 2002 and I am currently 3 weeks post-op. Like you, I too took a long road which eventually ended up with Dr. Lever and the Cleveland Clinic. What I feared the most was that Dr. Lever would recommend surgery (which I knew he would intellectually but was hoping not emotionally). Once I had my "day on Campus" it was pretty clear that surgery could give me back what the physical aspects of HOCM was taking away. I have to say that my fear and aprehension was with me up to the point I went to sleep in the operating room. Now, I am very glad that I went through with the surgery. Last night after eating too large a thanksgiving meal, I was able to climb the stairs in my house without symptoms. Wow!

    Keep in mind that this is still open heart surgery, but you are young and I assume healthy in all other respects. I am 41 and have, what I believe, is an exceptional recovery (knock on wood). There are many folks on this board who have had surgery this year at CCF and other locations. Post your questions or concerns and we'll be glad to answer. You can also e-mail me privatly if you prefer.

    Good luck

    Bob Hartwell

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: surgery]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 11-30-02 18:35

    Susan,

    I am so happy you finally got to some quality care! Stories like yours really make my day! The work done here at the HCMA is done for people just like you, those who thought that there were no paths left to take and that life was just not going to get any better... I have seen so many times that this is just not true...a specialist can make all the difference...

    Truth be told... I have not been 100% honest with all of you... and sometimes the old saying practice what you preach is so true... Over the summer I was not feeling very well at all...I was slipping, my symptoms were getting rather bad, I had resigned myself to this and was just taking it... Well then someone, a very unlikely person, (a wife of one of our medical advisors) called me and said..in short what are you doing??? take care of yourself!!! OK OK no arguing with this woman so I took some action...

    Here is my latest treatment program - I am no longer paced I have cut back on some of my beta blockers and added verapimil.. and (drum roll please...) I am feeling much better!

    I am so happy your taking steps to improve your life, I know you will be happy that you did. Oh and thank you for the nice things you said, they do mean a great deal!

    Best to all!

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: surgery]

    Author: Elizabeth (---.fuse.net)

    Date: 12-01-02 07:16

    Dear Susan,

    Fantastic that you have found Dr. Lever and are being given the option of surgery to help you with some of your symptoms. I can very much identify with your post about symptoms deteriorating your quality of life and watching your father going through life with hcm, thinking you were headed there too. I had a myectomy at CCF in July, 2001. Although scary, the surgery has made a drammatic improvement in my quality of life and I have no regrets. (Well, the scar....) Anyway, feel free to e-mail me if you have any questions. I'd be happy to answer questions! Good luck!

    Elizabeth
    NOTE: This is a post from the previous forum message board.

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