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Eileen2345 Find out more about Eileen2345
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  • AHHHH!! I have an appointment!

    I have an appointment at the CCF at the end of April!!

    Ahhh!! I feel like I am starting to chicken out. But deep down I know I cannot.

    I have to send CCF the films from my echos now, so that they can set up an appointment for surgery while I am there.

    I talked with Dr. Lever's secretary and she was so nice. Everyone there is so nice. They really care. And let me say -- I am not used to that.

    As many of you know, I have seen all kinds of doctors in my life, from surgeons, radiologists, oncologists, OBGYNs, endocrinologists, cardioloists and EP docs. And the people at CCF were nicer than all of the other doctors combined.

    Dr. Lever's secretary said that they might get me in there sooner than the end of April if my films show I am in bad shape. So, we'll have to see. She said, "you need to get in here, if you're as bad as you say you are, you need to be seen very soon."

    Right now, I am going to get the echo films from both cardiologists and I am going to overnight them to CCF. I have the correct address.

    Thank you everyone for your support and for your information. I know now that I must have this done or I will die much sooner than I want to. I am deteriorating fast.

    Thank you again

    Hugs to everyone

    Eve
    49 yrs. old
    Diagnosed at 31.
    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
    My brother passed away suddenly at 34 yrs old from HCM.
    2 teenage children, ages 17 and 15.

  • #2
    Eve.

    May you live many, many years. Please know that we are supporting you with our prayers and well wishes. You will love Dr. Lever. He is as nice as any Dr. I have ever visited.

    Peace,

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

    Comment


    • #3
      Hi Eve,

      You are definitely headed to the right place and I'm so happy for you - although I understand that it is nerve-racking. I wanted to chicken out so many times before I went to CCF I lost count. Once I went went there though I was so at ease as everyone is knowledgeable about HCM and there is a comfort in that which is hard to describe.

      The staff is wonderful and the experienced doctors are first-rate. Lever is a tremendous doctor who always keeps his patient's best interests in the forefront and his secretary, Karen, is out of this world!! (Just ask my daughter who likes to draw pictures for Karen's office... )

      Take care, rest as easy as possible and know that you are doing the right thing!

      L
      Lynn Stewart
      HOCM 4/2002
      Cleveland Myectomy Crew 8/2002

      Comment


      • #4
        Eve,

        I can't tell you how happy i am for you right now. Woo hoo!

        Jim
        "Some days you're the dog... some days you're the hydrant."

        Comment


        • #5
          Way To Go EVE!!

          Now I and everyone else here can breath a little sigh of relief that you are going forward to at least get the best explanation possible. I believe with everything I know that you will win this battle and have many , many years with your family and with all of us. Yaa Hooo!!!!

          Pam
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

          Comment


          • #6
            Eve, So happy for you as you take this next step. Please keep us posted. Linda

            Comment


            • #7
              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
              Reenie

              ****************
              Husband has HCM.
              3 kids - ages 23, 21, & 19. All presently clear of HCM.

              Comment


              • #8
                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
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  YEH!!

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

                  Lisa
                  Knowledge is power ... Stay informed!
                  YOU can make a difference - all you have to do is try!

                  Dx age 12 current age 46 and counting!
                  lost: 5 family members to HCM (SCD, Stroke, CHF)
                  Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                  Therapy - ICD (implanted 97, 01, 04 and 11, medication
                  Currently not obstructed
                  Complications - unnecessary pacemaker and stroke (unrelated to each other)

                  Comment


                  • #10
                    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
                    49 yrs. old
                    Diagnosed at 31.
                    Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                    First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                    Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                    Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                    My brother passed away suddenly at 34 yrs old from HCM.
                    2 teenage children, ages 17 and 15.

                    Comment


                    • #11
                      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
                      Reenie

                      ****************
                      Husband has HCM.
                      3 kids - ages 23, 21, & 19. All presently clear of HCM.

                      Comment


                      • #12
                        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
                        "Some days you're the dog... some days you're the hydrant."

                        Comment


                        • #13
                          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
                          Knowledge is power ... Stay informed!
                          YOU can make a difference - all you have to do is try!

                          Dx age 12 current age 46 and counting!
                          lost: 5 family members to HCM (SCD, Stroke, CHF)
                          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                          Therapy - ICD (implanted 97, 01, 04 and 11, medication
                          Currently not obstructed
                          Complications - unnecessary pacemaker and stroke (unrelated to each other)

                          Comment


                          • #14
                            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
                            49 yrs. old
                            Diagnosed at 31.
                            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                            My brother passed away suddenly at 34 yrs old from HCM.
                            2 teenage children, ages 17 and 15.

                            Comment


                            • #15
                              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

                              Comment

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