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For anyone visiting the Cleveland Clinic

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Robert Hartwell Find out more about Robert Hartwell
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  • For anyone visiting the Cleveland Clinic

    Hi everyone!

    I just got back from CCF and my post-op visit with Dr. Lever. I want to relate what happened to me so that others can be more prepared.

    After making my appointment to see Dr. Lever, I received an appointment sheet from CCF indicating the appointment plus scheduled EKG and X-Ray. Knowing that these do not take very long, and my Dr. appointment was at 1:30 pm, I scheduled a same-day return flight home leaving at 7:00 pm. This would give me plenty of time even if the Dr. was behind.

    The night before my trip, I got home from work and found a second appointment reminder from CCF which had just arrived that day. It now listed labs, echo, and holter monitor, with appointments up to 5:00 pm in addition to the previous tests. I now had a scheduling problem because appointments run long (don't get me started here ) and it costs a lot of money to change plane tickets and spend the night.

    Fortunatly, Dr. Lever and his staff did all that they could to get all of my tests done and still have time to see him . Things were a bit rushed but we made it. Dr. Lever even had his Secretary draft up a letter explaining the problem in case I needed to change my tickets.

    Had I known of all the appointments, I would have planned to stay the night and return home in the morning. In the future, I will be contacting the cardiac appointment secretary and confirming all of my appointments PRIOR to making travel arrangements.

    Just food for thought.

    Bob Hartwell
    Cleveland Myectomy Crew
    Member since November 2002

    \"Chance favors the prepared mind!\"

  • #2
    Bob,

    I glad all worked out well. Dr. Lever's crew goes above and beyond, don't they? It's so refreshing to see a doctor and staff who will go so far as to draft letters "in case" you need them. Keep us posted on yourself.

    Reenie
    Reenie

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

    Comment


    • #3
      Bob - thank you for sharing that VERY practical advise! Sometimes the simple things are the most helpful and remove a great deal of stress from a day that is stressful enough.
      Also - Dr. Lever and his staff have always been great about working with 'out of towners' to help the visit run smoothly!
      Best wishes,
      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


      • #4
        Cleveland Clinic Appointments

        My husband and I have been going to CCF since August 2002. It seems that each time the waits for the appointments get longer and longer also at times we have tried to go from one appnt to the next sooner than our appnt time due to we live out of town and also seem to have to stay at the guesthouse and it does get very expensive. The last visit Dr. Lever seemed to have had a bad day and was very short with my husband. My husband was told that he needs to have a myectomy due to the alcohol ablation done on Sept 11, 2002 only reduced his thickening from 25cm to 21 cm and his symptoms have not gotten any better. He now is wondering about Dr. Lever attitude on how soon he will need his myectomy and if Dr. Tuczu has discussed w/ Dr. Lever the possibility of another ablation. The myectomy surgery has him very scared!!!! He has applied for disability and has a hearing in Feb 2003 our first try he was denied and his symptoms are such that he can not do anything without loosing his breath including walking from room to room. Any thougths let me know.

        Comment


        • #5
          Kelly - re the question of ablation again or myectomy - you need to ask dr. lever why he has made that call. I would strongly suspect that there is good reason for the recommendation.
          I also know that CCF did a study looking at the long term outcomes between ablation and myectomy - in this study patients who had myectomy had better long term symptomatic improvements.
          While I know the idea of surgury is less the pleasent...many people here on the board can help you out and share there experiences with you and your husband.
          The goal here is to improve quality of life as much as possible!!!
          I hope your husband keeps an open mind and opens himself to all options!
          Best wishes,
          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


          • #6
            Kelly,

            I can not comment on your recent experience with Dr. Lever, however, he is very direct and to the point. When I was there last October, he did not ask me if I wanted the surgery, he told me I needed it. When I indicated that I was unsure, he said putting it off would only make it longer for me to enjoy life without the symptoms. His attitude, which I took more for confidence than shortness, was just what I needed at that time.

            My myectomy was done in November and Dr. Lever came and talked with me just about every other day. I am now going on 4 months post surgery.

            There are many posts on the board concerning the surgery. There are many of us here who have had the surgery. If surgery looks to be the way to go for your husband, I would be happy to speak with both of you on the telephone if that will help. To be honest, I was scared up to the point I was put under. BUT... I am so glad I did it!

            Please send me a Private Message and we can hook up by phone.

            Bob Hartwell
            Cleveland Myectomy Crew
            Member since November 2002

            \"Chance favors the prepared mind!\"

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