If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

AHHHH!! I have an appointment!

Collapse

About the Author

Collapse

Eileen2345 Find out more about Eileen2345
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Eileen2345
    replied
    Thank you so much everyone!

    I should hear from Cleveland by Monday or Tuesday. (3-21 or 22.)
    I will post what they said.

    The only thing I am wondering is that if I have let this go on too long. I am in such bad shape now that I wonder if there is heart damage that a myectomy will not be able to help. (Such as stiffening of the ventricle.)

    My legs hurt so bad every day that there are times that I can hardly use my left leg. There are some days that I can barely walk.

    It has been so long since I have been 'normal' that I have forgotten what it feels like to be 'normal.'

    I guess I'll wait to see what CCF has to say.

    Thanks again everyone. You are all the best.

    Hugs,
    Eve

    Leave a comment:


  • Lisa Inman
    replied
    Eve,
    Congratualtions! This must be scary, but you rate expert care and I'm hoping that you will be greatly relieved to have the quality of information and support that they can offer you. Keep us posted! I'm wishing you and your family the very best.

    You are always giving those in need wonderfully huge "parenthetical" hugs, so here's some for you:

    ((((((((((((((((((((((((((Eve and her family)))))))))))))))))))))))))))))

    And also--thanks for the picture of yourself, it is wonderful.

    best wishes, Lisa I.

    Leave a comment:


  • Abbygirl2
    replied
    Wonderful news. Not only do you need to follow through with this, you deserve this chance at a happy life. You have much to live for and little ones who need you. I hope you feel the excitement of seeing some sunshine through the clouds-finally. I know we are all excited for you, and want to be with you every step of the way. Best wishes.

    ((hugs))
    Pam

    Leave a comment:


  • Ralph
    replied
    Eve,

    I am so happy you are going to see Dr. Lever at CCF! Today is the first anniversary of my myectomy. I love Dr. Lever, Dr. Smedira, Dr. Thomford and all my CICU nurses. Karen, Dr. Lever's Sec. is fantastic. These people are truly caring people who have their act together.

    My quality of life since the myectomy has been wonderful!! I can do so much more and feel so good, it's hard to believe at time. If fact, I have tears in my eyes now I as type this to you.

    In my opinion, CCF is the best. The "run of the mill" cardiologist throughout the USA, in my opinion don't have a clue what HCM is all about.

    I think once you visit CCF you will be ready and will to begin your journey back to a better quality of life and the promise of more great years to be with family and friends.

    May God Bless you!

    Ralph

    Leave a comment:


  • mtlieb
    replied
    Originally posted by Burton Borrok
    Now you’d best keep us posted on your progress – Phoenix is not all that far from Las Vegas you know.
    Don't worry Eve, we'll all back you up on the restraining order if you need to get one.

    Leave a comment:


  • Burton Borrok
    replied
    Hey Ninny,
    Hang in there kiddo. There is nothing as gorgeous as the North East in the spring. After you get a full work-up by the best there is, and find out what your options really are, I think you will be retuning home with hope in your heart and a spring in your step.

    There will come a day when you will look back and say, “This is the exact point where I stopped getting worse and started getting better.” I’m also willing to bet the day will come when you will be sitting in a rocker with your grandchild in your lap and you will relate this experience as an example of why you must always carry on to your goal and how much you can benefit by it.

    Now you’d best keep us posted on your progress – Phoenix is not all that far from Las Vegas you know.
    Burt

    Leave a comment:


  • Eileen2345
    replied
    Hi everyone,

    Yes, you're right Jim, I think the doctor said those things in hopes of helping my disability case.

    But, he never mentioned to me that I should call The Cleveland Clinic, he said that I should apply for disability now since the process takes a long time.

    I'm guessing here, but my local doctor basically said there is nothing that can be done until I am qualified for disability and accepted by Medicare.
    Until then, nothing can be done for me.

    Again, he was wrong. Now that I am getting used to.

    Two years ago, when I was hospitalized, I spoke with 2 cardiologists and 2 EP doctors and not one of them ever mentioned a myectomy to me. And at that time, my pressure gradient was 140 mmhg.

    Par for the course.

    Thank God for CCF and the HCMA.

    I'm so tired right now, I'm sick to my stomach. I hope this post makes sense. Thinking is not my strong suit right now.

    Hugs,

    Eve

    Leave a comment:


  • Lisa Salberg
    replied
    There is one major "course of action" that I would suggest.... GET A 2nd OPINION!

    I feel it was an inappropriate statements to make- - you have options and if THAT doctor was unaware of what your options are he should have actively worked to help you get a 2nd opinion.

    Off to Cleveland with you my dear

    Lisa

    Leave a comment:


  • mtlieb
    replied
    Originally posted by Eileen2345
    My local cardiologist sent me a letter stating that according to his findings, I am completely disabled and there is no course of action.
    Any doctor who told me that would be getting a swift kick in the butt and a sweep to the curb pretty quick. In my opinion, there is always a course of action. To be fair though, it's quite possible your local cardio wrote that letter with good intentions in the hopes of helping your case for disability. If that is the case then it's still great that you're getting checked out in Cleveland. If Lever says you're disabled with no options, then you can believe it. I doubt that will be the case though. I have high hopes he's going to get you all fixed up.

    Jim

    Leave a comment:


  • Reenie
    replied
    Concentric means that you have thickening all through the left ventricle. That doesn't mean that removing the obstruction can't help, though. I think your doctor just doesn't understand HCM very well.

    Reenie

    Leave a comment:


  • Eileen2345
    replied
    Hi everyone,

    Thank you so much for your responses and support. You all are the best.

    Here is my concern..

    I went to get a copy of my echos, EKGs and the reports and all of them said "Concentric, Concentric, Concentric........

    I hope CCF can help me. My local cardiologist sent me a letter stating that according to his findings, I am completely disabled and there is no course of action.

    I am worried about the Concentric part and the Myectomy.

    I guess we'll see what Dr. Lever has to say.
    I am really tired now, so I'll check in here later.

    Thanks again everyone.

    Hugs to All

    Eve

    Leave a comment:


  • Lisa Salberg
    replied
    YEH!!

    I am very happy to hear you are on your way to a 2nd opinion at a quality center!

    Lisa

    Leave a comment:


  • shirleymahoney
    replied
    Eve

    I'm very proud of you Lady, i know that was a big step for you but i think you will be glad you did when this is all over, i'm keeping my fingers crossed for you

    Shirley

    Leave a comment:


  • Reenie
    replied
    Oh, Eve! I wish you could see the smile on my face right now! I'm so happy that you have a starting point now. Hang in there. It looks like some relief is in the makings!

    Reenie

    Leave a comment:


  • Linda
    replied
    Eve, So happy for you as you take this next step. Please keep us posted. Linda

    Leave a comment:

Working...
X