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I'm Back From Minn

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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • I'm Back From Minn

    Hey everyone

    A quick note to let everyone know i'm back home, they are running some tests to Rule out other diseases but i feel it is HCM, Dr. Maron is a great doctor and the entire staff was great, i had an Echo that last over an hour, the tech did one and then Doctor Maron came in and asked and did his own.

    But at the end he agrees with Dr. Gilligan that i need to talk to our local transplant team that i'm among the few percent that gets to this point

    I'm glad i went, it does make my decision a little easier, i have to first go to PCP doc to have him send me over for a stress echo he wants to see how my heart with stands stress

    But all in all i had a very good workover and was very please when i left and i had 3 doctors in all check me Dr. Harris and Andre i'm sorry ican not spell this mans name but if you check the board thank you very much and a big THANK YOU to Dr. Maron and the entire staff there at the Outpatient heart clinic

    And a special thank you to everyone here for giving me support to even do this and giving me their wisdom

    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

  • #2
    Re: I'm Back From Minn

    Shirely, I wish the news had been more positive, although it looks like you are accepting it and know how to move forward.
    I wish you all the best of luck on this difficult journey.
    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.
    Glen

    Comment


    • #3
      Re: I'm Back From Minn

      Shirley ,

      Glad to see you at least were able to fathom through some of the confusion and get some answers. I too wish the news were better and that there was an alternative treatment for you . I will keep you in my thoughts and prayers that all the testing goes smoothly and that a great heart is available for you very soon.

      My best to you . 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


      • #4
        Re: I'm Back From Minn

        Shirley,

        I'm relieved to hear that you had such a great visit with the docs in Minneapolis! If a heart transplant is in your future, then at least you can take comfort in having a second opinion on the issue. It sounds like you had a very thorough work-up, and were treated well during your visit.

        Take care,

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

        Comment


        • #5
          Re: I'm Back From Minn

          Shirley,
          I hope you got the IM messages I left for you after I had breakfast. I was running a tight schedule all day today and just got the chance to sit down and respond now.

          Folks, would you believe that when Shirley was being wheelchaired to the plane some nut remarked, “Look how lazy that woman is.” I wish Ken would have blindsided him and left him on the floor out cold. Some people are just so dumb they can’t even hide their dumbness.

          Obviously that really got to me. When I travel I also use a wheelchair, and I’ll bet I look a lot healthier then you do. To my knowledge no one has ever looked at me with a strange expression when I am in the wheelchair – but then I don’t much care if they look or not. I just can’t get to the plane without it.

          About the result of your second opinion, I’m very glad they are covering every possible base and doing all the testing, but I’m willing to bet your going to wind up as one of our spokesman on how to get rid of a serious case of HOCM. It will take some time, but you will not only get a new heart but a new lease on life also. What an exciting prospect. I wish they could transfer my brain to a new body – now that would be something. I could get rid of all sixteen diagnoses in one fell swoop. (Maybe a twenty one year old with a great physique – I’d even be willing to face the draft again. Oh well - -.)
          Burt

          Comment


          • #6
            Re: I'm Back From Minn

            Shirley,

            I am glad you have a path to follow and some answers that will help you during the process! Midge is a great person to talk with and she has done so well I am sure she will be there for you.

            Take care of yourself and start the process moving - so YOU can get back to feeling better!!

            Big hugs from NJ!
            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


            • #7
              Re: I'm Back From Minn

              Hi Shirley
              I'm so glad you liked all at the Mayo Clinic. I think they're great too.

              Please keep us posted as to your future events.

              We are all praying for you.
              Esther

              Comment


              • #8
                Re: I'm Back From Minn

                Dear Shirley,

                I am so sorry that the news was not better, but glad that you are happy to have had a clear confirmation of what you need to do.

                We will keep praying.

                Rhoda

                Comment


                • #9
                  Re: I'm Back From Minn

                  Shirley, I too am sorry the news was not better. As Lisa says, I am here for you. I do feel sooooo much better. Tomorrow, I am preaching at my church to tell my story and to promote organ donation. There will be one out there for you. Keeping you in my prayers.
                  Midge

                  Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                  ICD&Pacemaker 1996
                  Heart transplant March 19, 2004 @ Mayo Rochester
                  Mom of Kaye.

                  Comment


                  • #10
                    Re: I'm Back From Minn

                    Shirley,
                    You've accomplished what you needed to. You saw one of the very best and now know the path to take. I wish it had been better news, but you seem like a very positive upbeat person and that accounts for a lot! I know there will be a healthy heart for you soon....take care and you will be in my prayers.

                    Cynthia
                    \"It is not length of life, but depth of life.\"

                    Ralph Waldo Emerson

                    Comment


                    • #11
                      Re: I'm Back From Minn

                      Hi Shirley,

                      I too am sorry that the news is not better. But at least you know what is going on and you can get on the list. I really hope the very best for you. I pray that you are well very soon. I wish you the best.

                      Big Gentle 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.

                      Comment


                      • #12
                        Re: I'm Back From Minn

                        Dear Shirley,
                        This is my first post and first time to the website. I am glad you gave your feedback. I am still in the shocked, what is happening syndrome with my athletic son. I am scheduled to go to Minn this week for confirmation.
                        I wish all the best to you.

                        Lisa and others, this website has been most helpful to me learning more about this possible illness. Please keep our family in your prayers as we make this journey this week.

                        Marsha

                        Comment


                        • #13
                          Re: I'm Back From Minn

                          Mawon

                          If you are going to see doctor Maron, or any of his staff you will be in excellant hands, good luck and welcome to the board. How old is your son, my son has the disease and is doing well, he has a ICD and taking meds, again welcome to the board and keep in touch

                          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


                          • #14
                            Re: I'm Back From Minn

                            Marsha, I just want to wish you the best of luck. We're here if you have any questions or concerns.

                            Reenie
                            Reenie

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

                            Comment


                            • #15
                              Re: I'm Back From Minn

                              Marsha,

                              Welcome to the Hcma. I too am sorry you are having to deal with this , you , your son and family are in my thoughts and prayers.

                              It is an overwhelming experience when new , shocking details are revealed to us about ourselves and our loved ones and we have many questions and uncertainties. You are going to the right place. Stay connected to the support here and we are here to help.

                              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

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