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CCH Here I come


About the Author


Largehearted I miss living in Europe, specifically Munich, GermanyI like to think out loud. Some of my ruminations can be found at beinganddoing.wordpress.com. I love to cook and eat, but hate to clean up. I tend to be confident in my opinions, but will change when presented with a compelling enough reason/argument. Find out more about Largehearted
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  • CCH Here I come

    Merry Christmas to everyone.

    I am looking forward to two weeks of vacation beginning December 20. That is also the dayI am headed to CCF to see Dr. Lever. For the first time since I was diagnosed (1990) I will be evaluated by an expert in HCM. I am excited about that too. Perhaps they will say stay on the course I am on, perhaps they will say something else. In any case I look forward to hearing a more definitive word than I have been able to get thus far.

    I managed to get a tape copy of my last echo. I was surprised to see that my mitral valve definitely makes contact with my septum. I figured with my symptoms not nearly as bad as some of you guys I must not be making full contact but I am.

    I got my records and as I read through them I was surprised. I discovered that my EF was 30% and 70%. I found out that I have both obstructive and non-obstructive HCM. My inter-septal measurement has been wondering about too. Three years ago it was almost 3cm. Last year it was 2.7 and by this September it has reduced itself down to 2.3cm...hmmm if I could just find a way to market that. There were other interesting findings. I saw a conversation I didn’t know I had in there. I was declared to be clear of symptoms when what I actually said was that there was “nothing out of the ordinary for me with HCM” i.e. I do have SOB, chest pain, dizziness etc. just nothing more severe than normal for me. I guess I needed to be clearer. I even discovered at one point that I am evidently a female. That took me off guard!

    My wife, a nurse, said "this is why they don’t like you to read your charts."

    Anyway I am looking forward to Monday when Dr. Lever evaluates me. Even if we do nothing different, I will get something a bit more solid by way of information.


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

  • #2
    Re: CCH Here I come

    Good Luck Leon, I hope you hear what you want to.
    Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
    So if you are capable of thought then you are capable of great things
    Good luck and stay well.


    • #3
      Re: CCH Here I come

      Well Guy

      It is about time you think, i hope they can give you the best of news, you know the way i feel , i'm looking forward to the transplant, it may sound crazy but i do look forward to it, i had my metabolic stress test done yesterday and only lasted 2 and a half minutes my hands and feet were turning numb so they stopped it

      I never told them well i couldn't i guess the shaking my hand told them trying to get the blood moving in it told her

      But good luck Buddy and your wife is right that is one of the reasons they don't like you reading your records

      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


      • #4
        Re: CCH Here I come

        Originally posted by Largehearted
        I even discovered at one point that I am evidently a female. That took me off guard!

        My wife, a nurse, said "this is why they don’t like you to read your charts."


        Ok then! Well, I'm glad you got that straightened out at least! Good luck in Cleveland and let us know what they say when you get back.


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


        • #5
          Re: CCH Here I come

          Hi Leon.

          I even discovered at one point that I am evidently a female. That took me off guard!
          Holy Cow
          Geez, you think they'd get that right at least

          I wish you all the best, please let us know what they say

          Hugs -- Eileen
          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.


          • #6
            Re: CCH Here I come


            Merry Christmas to you also! I'm glad that you will be seeing the folks at the CCF and getting some straight answers. Perhaps they can sort out this male/female thing for you while you're there also. LoL. That must have been a big shock to your wife.

            One word of advice before your trip to Cleveland... be prepared to do some waiting while you're there. Not just a little waiting either. Unless you are very fortunate, you may easily sit in the waiting room for several hours before your appointment. Take things to read or listen to, and have people with you who can run and get drinks and snacks while you're waiting.

            Be sure to write back and let us know how everything goes... we'll be anxious to hear the results.

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


            • #7
              Re: CCH Here I come

              I bought a fat book just for the occasion. Usually I read a lot of deep theological stuff, this one is pure adventure entertainment to help me pass the time.


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


              • #8
                Re: CCH Here I come

                Good Grief! Leon your a woman??? How does your wife feel about this???

                I think it is a good idea for ALL of us to look at our files.

                Good Luck at CCF, your in great hands.

                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)


                • #9
                  Re: CCH Here I come

                  Funny you mention that. Upon coming into the ER I've had to convince them I'm a female but at least it made it on the charts right. I don't know many guys named Mary but I know a guy that went from Nick to Nicki!

                  In one hosptial they were instistant on saying that my date of birth was 6-12-48 for some reason. I guess I look great for a 56 year old! Imagine the shocked look on his face. He said my EKG looked that age but I didn't I don't know if it was a complement or not.

                  Oh well,

                  mary S.


                  • #10
                    Re: CCH Here I come

                    Hey Leon – or is it Leona?
                    Felicitations of the Season. I’m sure you are aware that Leon spelled backward is Noel – so I guess this is your time of year.

                    Just a couple of points – the varying readings on your Echo’s might be a function of the operator and/or reader.

                    Heck, if they have trouble figuring out your sex – I’d check the records very carefully – along with a large dose of ‘theoretical’ salt.

                    I fully expect CCF to do their own work-up on you, and you will then have some readings you can take to the bank. Good luck and keep us posted.


                    • #11
                      Re: CCH Here I come

                      Best of luck to you Leona , I mean Leon . I hope all is going well and you get the most accurate summation of your condition.

                      Your wife knows right . All those charts are riddled with things that are wrong and sometimes downright goofy. When i worked nights in a psch hospital one of the nurses with me was talking about pineapple recipes and also saying how tired she was. At the same time she was charting on a patient and she wrote that the child had pineapples on his pillows all night. The day staff was hysterical when they read it the next day and asked me what went on on my shift? Now you can not cross out in a medical record or use white out. It is there forever. You can only insert an addendum to the entry and offer explanation. She was very upset that everyone down the line would see it.

                      When I reviewed my records from a previous hospital the electrophysiologist described my physicallities as likening them to a male with black hairy forearms and very large hands. I have never let go of that and still ask my family if that is what I look like. They laugh and call me monkey woman to tease me. I think he was trying to make a case for the disease where one becomes gigantic and at the time they were trying to rule out the HCM. So even though it is important to see our records we need to be quite thick skinned in preparation for what we might read.

                      Let us know how you do.

                      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