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specialist... does quality of live improve?

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Lisa Salberg Find out more about Lisa Salberg
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  • #16
    Re: specialist... does quality of live improve?

    We went to the boston clinic, were treated very nicely there, partly i think because they knew there was not much hope as i had progressed so far and since i am HCM only. But they were willing to work with my PC and try some different meds, none have helped really
    We did learn a few things we didn't know, they were able to help my husband understand it more. And we do feel more confident with what is in store for us.
    Laura Johnson

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    • #17
      Re: specialist... does quality of live improve?

      Great topic, althou it does leave me alittle unsettled about my upcoming event (I hope ) in northern California. Rick
      \"A Misty Morning Does Not Signify A Cloudy Day\'

      Comment


      • #18
        Re: specialist... does quality of live improve?

        Well after almost a year since my expensive trip from Oregon to Cleveland, I finally am going to respond to this message.

        It's really hard for me after all I've been thru in my life with rape and sexual molestation, long years of self abuse, nicotine addiction, cocaine addiction, self loathing, stomach stapling 20 yrs ago that and regaining the 100lbs & more to find out that I have HOCM and then to go to see Dr. Lever and be treated like a waste of his time and the lowest thing to crawl in his office. Even my husband was astounded by the disdain and out right disgust with me. Mind you I have recovered from and have been drug and nicotine free for over 15 yrs. And I've never had an alcohol problem. I have fought the hard fight!

        I am still fighting the hard fight. I am terrified to be thin and terrified of dying of this disesase let alone the Hep C and life threatening asthma & allergies.

        I have stuffed the anger of this trip long enough and I know in my heart that it must be extremely difficult for someone like this doctor who saves lives everyday to deal with obese patients but it is still no excuse. Part of my over eating is due to my inability to deal with my anger appropriately. That day with this doctor all I could do was cry because I could not believe after the long hard journey in a plane, the expense, the lack of sleep that I should be treated with this attitude.

        Before I even met him as the nurse brought me from the outer waiting room thru the door I saw this man who looked at me and said to the nurse "Oh my God, who's patient is that" for which the person standing next to him replied "your next patient" I prayed this guy wouldn't be my Dr.

        Please forgive me if I'm babbling and my train of thought jumps I'm very sick today and when I returned to the board and saw the question regarding specialists I knew it was time to respond.

        Thanks Lisa and the rest of the staff who have poured their hearts and souls into this site. I appreciate it and have decided not to let my trip from HE double tooth picks keep me away.

        Oh and the bottom line on did my trip help. NO! He said that my care by my local cardiologist was right on target and that I needed to loose the weight because if I need surgery my likelihood of surviving with my current weight, I would not make it.

        Sincerely


        Diana

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        • #19
          Re: specialist... does quality of live improve?

          Dear Diana,
          I am absolutely shocked, and very disturbed by your posting. I guess we all have been abused by one doctor or another during our lives, but what you describe is absolutely uncalled for and totally inexcusable. We are all human beings, and are entitled to being treated with dignity and care – especially by an educated person such as a doctor.

          If you’ll pardon my observation – You’ve Come a Long Way Baby! You haven’t yet conquered every mountain, as evidenced by your persistent weight problem, but you have successfully conquered many a high mountain peak. You have reason to be very proud of yourself.

          Regarding HCM, the vast majority of people with the disease live a full lifespan. Unless there are many in your family background that died of sudden cardiac death, and you don’t take care of yourself properly, you will in all probability live out all the days of your life.

          I suppose your biggest hurdle now is your weight, which is a threat to your wellbeing, but after the mountains you’ve already conquered – what’s one more? Please keep in touch and let us know how you are fairing.
          Burt

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          • #20
            Re: specialist... does quality of live improve?

            Thanks Burt. your validation and empathy for my journey is received with great warmth and balm for my heart. One of the many great things that keep me going are the people who love me for who I am off the scale. Who call me and who often ask for my help or wisdom scary sense of humor. I am more that a physical body and my conditions and I will be known for so much more when I'm gone. I finally draw strength from these blessings in my life to carry on. Thank you again for your kindness and blowing a warm comforting hug.


            May you blessed and have superior life ahead of you.


            Sincerely,


            Diana, Queen of a lotta love, & married to the King"

            Comment


            • #21
              Re: specialist... does quality of live improve?

              While we each have a different experience with different doctors I have to say your posting is the complete opposite as to what I hear from nearly everyone else we have known who has gone to Cleveland.

              I was interested to see in your posting that you have been through a great deal in your life and that you have had a difficult time dealing with anger. I will suggest that sometimes we expect a trip to a specialist to solve all of our problems; I do not think this is a realistic expectation.

              I appreciate your opinion and experience however I have to say in all honesty that Dr. Lever is one of the most caring doctors I have had the pleasure of knowing. Dr. Lever has gone above and beyond for many patients and in fact has called me on nights and weekends to help make connections between patients and the HCMA (with all appropriate consents).

              We all have good days and bad. I have often seen confusion in people between "intent" and "perception" - A statement make by one person may be "intended" in a good spirit - however the person receiving the information may "perceive" it as something different. I would suggest there may have been a similar situation in this case. I would hope that you could re-connect with Dr. Lever and discuss this matter.

              I hope you are feeling well.

              Sincerely,
              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


              • #22
                Re: specialist... does quality of live improve?

                I would have to say 'Yes' seeing a specialist did help my husband. He had been seen by a local cardiologist and was told there was nothing wrong with his heart, that he was out of shape and needed to be walking 4 miles a day. He could barely walk from the car to the front door because he was so short of breath. We went to St. Louis to see a specialist and was referred to another dr. that performed septal alcohol ablation last November. My husband felt 'different' on the table after the procedure and has done well since. He has had some fatigue recently with such hot temperatures and high humidity where we live.

                Paula

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                • #23
                  Re: specialist... does quality of live improve?

                  P. S.

                  I forgot to say he was obstructed, but I guess that is obvious since he had the ablation.

                  Paula

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                  • #24
                    I can safe that the specialists i saw absolutely saved my life. The local cardiologists that i was seeing were trying meds on me, and due to other complicated health issues, i was literally dying every day. I didn't have the time or the options of waiting until meds worked. The specialists that i was blessed with meeting were not only excellent in their professional assesment, they truly cared for me as a person. The surgical procedure that was done gave me the ability to get up and walk then next day! I hadn't been able to move more than a few steps for so long. Though i am still undergoing challenges with pre-existing conditions, I could not say enough about the specialists who saved me. I even consider moving to the east coast so that i can be followed there regularly. My cardiologists here while very kind, are not nearly as informed or as thorough in their follow up.. I had an alcohol ablation and they keep having to look it up and find out what it is ....Ha! Meanwhile the HCM specialists have really got it all together, and i trust them with my life!!! I shall be ever indebted to them and to the people of this website for being alive to say MERRY CHRISTMAS!!!! Believe in Miracles!!!!!

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                    • #25
                      After visit to a specialist

                      This is THG I haven't posted for a while. Last March after gathering as much information as I could about my disease, I saw Dr. Lever at CCF. He put me thru a battery of tests and then sat me down and explained all the results and answered my questions.
                      I have known about having IHSS or HCM which is what Dr. Lever called it since 1999. But my previous Cardiologist said that the medication wasn't working(slowing heartbeat) I was on 240 mg verapamil after going up from 120 mg. the year before.
                      So saw Dr. Lever and he told me that my septum was thick at 3.9 but my at rest gradient was 11 mm Hg and post treadmill was 81. But I did a full 10 minutes on the treadmill. He put some physical limitations on me, double my verapamil to 480 mg. and I actually feel pretty good. This year's check-up showed about the same.
                      So my experience has been good and the visits to CCF better than I could have hoped. Merry Christmas

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                      • #26
                        obstructed

                        Oh, yes I am obstructed and I also have Hep C .

                        Comment


                        • #27
                          I'm glad to hear that you are feeling pretty good now. Stop by when you can. We enjoy hearing from you.

                          Reenie
                          Reenie

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

                          Comment


                          • #28
                            Lisa,

                            I would say I'm thankful for seeing a hcm specialist but not the news I recieved. So my quality of life is not improved but if I hadn't seen Dr. Maron I would probably be dead now. Seeing specialists in HCM is a necessity and I can't say that enough. And being the driver in the driver seat of your medical care is of upmost importance. That's my take.

                            Beverly

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                            • #29
                              Beverly,

                              I hope you had a nice Christmas. You are a very special person and one that I admire on so many levels.

                              Stay strong and keep your amazing faith. You are in my thoughts and prayers - everyday.

                              Big hugs!
                              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


                              • #30
                                Iam very thankful for Dr. Barry Maron and his staff for all they did for me, they gave me a the confidence to come back to Virginia and talk to our local transplant team, as one of the best centers in Minn, Dr. Maron said we have one of the best transplant centers in the country, Thank You Lisa for all the work you do on a daily bases to help people stricken with this disease and for starting this sight to help sooo many people

                                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

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