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Dr. appt

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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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  • #1

    Dr. appt

    Ok i have returned from my PCP doc and he feels i should be on the Transplant list also and i should get another opinion also he said when the time comes he will send me himself, and Dr. Gilligan's office called and wanted to know how much verapamil i was on and is thinking of increasing from the 240 mg to what ever they have not called back yet and i was also told to start wear my oxygen more then just at night, he said he thinks these headaches are from low oxygen being i'm white around my mouth and my nail brds are a little purple at times i will give more info i as i get it everyone have a great day

    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
    Tags: None
  • #2
    Re: Dr. appt

    Stay positive and focus on the future my dear friend!!

    How about hitting an HCM center soon... please

    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

    • #3
      Re: Dr. appt

      Shirley , I am sorry you have to face this ,but Lisa is correct try to keep as positive and focused as possible , on the good things that will come your way. I agree an HCM Center would be a good thing at this time. . New England is only around the corner from you or up the coast anyway . You know I am thinking of you and lean on us all through these tough times . 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: Dr. appt

        Shirley, Thinking of you, sending prayers and best wishes your way. You've been such a strong force of encouragement to others and we're all here for you too. Linda

        Comment

        • #5
          Re: Dr. appt

          Shirley, I'm really sorry to here your news.
          You sound like your handling it as well as possible, you know you will be in all our thoughts, so stay positive and we'll all pray for a positive outcome.
          Good luck & Stay Well!
          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

          • #6
            Re: Dr. appt

            Hi Shirley
            I have been reading your posts concerning your condition for quite some time. I've wanted to respond to them, but I didn't know how to put into words how I feel. First...I get angry when I think of all that you are going through. You are so very young. Second...I am so grateful that there are options for you to consider. Third..I am amazed as to how strong you are and how you can cope with all of the ups and downs you have been going through. I know some day I will have to make the same decision that you are right now. I hope I can be as strong as you.
            I keep you in my prayers.
            Esther

            Comment

            • #7
              Re: Dr. appt

              Thanks for all the reply guys they mean a lot to me, Ester i have my good days and my bad days just like everyone else here, I have alot to think about , i know whatever decission is made it will be the right one for me...i'm trying to take care of myself so if i decide to have the heart transplant it will be much easier for me but thanks again everyone

              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

              • #8
                Re: Dr. appt

                Shirley-

                Just wanted to let you know you're in my thoughts and prayers. Keep having that PMA!

                Ange

                Comment

                • #9
                  Re: Dr. appt

                  Shirley-

                  I'm so very sorry your condition is heading to the "transplant" decision. Whatever decision you make & whenever you make it - it will be the right decision for you. I would defnitely agree with Lisa, regarding another opinion & evaluation.

                  I pray you continue to have the strength & faith to continue marching. We are all here for you.
                  RONNIE

                  Comment

                  • #10
                    Re: Dr. appt

                    Shirley,

                    My thoughts and prayers are with you. I agree with Lisa...please get an opinion at NEMC in Boston...take care
                    \"It is not length of life, but depth of life.\"

                    Ralph Waldo Emerson

                    Comment

                    • #11
                      Re: Dr. appt

                      A second opinion is a great idea - Boston is great - but Mayo, Cleveland or Miinneapolis Heart would also be great -- just get the 2nd!!

                      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

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