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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • It is time...

    I received a call from Dr. M. Maron today. I just assumed it was going to be the usual followup from a hospitalization. Try a new med and see. But, this time he said something else. "It is time for you to go for a heart transplant" "We have exhausted every medication out there. Even tried supplements and off the wall meds but its not working. You're young and you have no quality of life for a 24 year old." So he gave me instructions to have my local guy give me a referall to the UF Shand's hospital to start the workup. He said at that point he will give them all of the info to back me up on getting the transplant.

    I knew this "day" would eventually come be didn't know it would be "today".

    I would apprecate any information and support about this process! I'm experiencing so many different emotions right now it's not even funny.

    Thanks.
    Mary S.

  • #2
    Mary, I am glad that you will now get the help that you need. I know this has to be scary for you but it is the best news that you could have gotten. From the letter I have read form people that have gotten one, its seems to be a whole new life waiting for you.

    My thoughts and prayers are with you. I pray for your peace of mind and all the good things that can come your why.
    Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

    Comment


    • #3
      Dear Mary

      I know that must be scary as all get out, but at least if you are on the transplant list, you can't be denied disability, right?

      Huge hugs! We are pulling for you,

      Sarah

      Comment


      • #4
        Mary,
        You have not been happy for far too long. Your health has been a very big part of what has been happening over the past 2 years or so. I am happy that there is a direction for you at this time, however I need to caution that the road to transplant is not and easy one and has many bumps... you will need to prepare yourself for this journey.
        You will need support, you will need inner strength, you will need good doctors, you will need good emotional help, you will need some luck too. This is a tall order and one that will take time to put together.

        I know you called on Friday and I was unable to take your call, I am sorry, I will get back to you as soon as I can.

        Take care,
        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


        • #5
          Dear Mary

          Stay positive . One of the most important things is having a positive attitude.Believe me I know.




          Stay well .
          Karen
          Karen Cicconetti
          Heart Transplant 1998
          Don\'t take your organs to heaven
          Heaven knows we need them here

          Comment


          • #6
            Dear Mary.
            You are in my thoughts and prayers. I am waiting for transplant too. I am 31 and have been waiting since October 8th of last year. We must stay positive and think of all the things we can do after transplant. I have had 3 members of my family that have had transplants. My cousin passed away a few weeks after hers but the docs said she waited too long to go on the list.My dad had a transplant as did my half brother. My dad is doing fantastic. In fact the year after he bought his first Harley Davidson. He celebrated his ten year anniversary of getting his heart.It's a tough road for both of us and others who are waiting for transplant but we have the great members of HCMA like Midge, Lisa and all the others to talk to and Friends and family. We can share stories too. Take care and God bless
            Kimberly K. Plaster

            Comment


            • #7
              Mary, you are on the road to an incredible journey. Testing and waiting will sometimes seem like forever but your attitude is 99% of getting through it. I like Lisa know you have not had a good quality of life for a long time. You are too young to have to live like that. During my transplant journey I met a 20 year old who lived his whole life with heart defects he is now 1 year out and you can not hold him down. Also met a 29 year old who had viral cardiomyopathy and she is doing great. Your quality of life will be so much better. I walked 2 miles this morning and then just finshed painting my bathroom. I will pay for it but just think I did it. You will learn a lot in the next few weeks. But do get good physician referral and educate yourself. Transplant is not easy but there is light at the end of the tunnel. If you have any specific questions and want to pm me please do so. You are 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.

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              • #8
                Transplant

                Dear Mary

                The best thing is take it one step at a time, get a good doctor and ask questions. No question is a stupid one!! If it is on your mind it is important. Try to find a support group they can really help. They can help you everything you are going through. My first exoerience at a transplant group was after my transplant the first person I met was 18 years out (that was 7 years ago) I see once him once a year for his annual he now lives in Florida, and is doing fine. This forum is also a great source of information and I know anyone who has had experance with transplant will try to help in any way.


                Stay positive
                Karen cicconetti
                Karen Cicconetti
                Heart Transplant 1998
                Don\'t take your organs to heaven
                Heaven knows we need them here

                Comment


                • #9
                  Thank you all very much on your thoughts prayers and reassurances. It reminds me that there are so many loving people in this world. I am amazed at how many friends I now have. And they are all over the world.

                  A special thanks to Rhoda, Karen and Bryan. You guys jumped right into action and it meant so much for your PMs.


                  Mary S.

                  Comment


                  • #10
                    Mary

                    Finally something positive is happening. I know from reading your posts that you were very depressed, this is very understanding weighing what you have been through.

                    Like others have posted, this is going to be a very stressful wait.

                    Please know that you are in my prayers.
                    Esther

                    Comment


                    • #11
                      May your birthday be the beginning of your rebirth path. How fortunate we are to have HCMA people to guide us through our "next steps" whatever they are, especially when it is this big. I'm rooting for you, Lisa Inman

                      Comment


                      • #12
                        Mary, you are in my thoughts and prayers. I wish you the best.

                        Big Hugs,
                        Eve
                        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


                        • #13
                          Mary,

                          I wish you the best luck in getting a new heart and know that when it happens it will be the start of a new life for you. As everyone says it will be a long road, but hang in there, things can only get better!

                          When you said that you knew for a long time that a transplant was coming, what do you mean? Did your doctors say something to you in the past to make you feel this? If so, what?

                          Good luck. We'll all be watching out for news in the coming months.

                          Paul
                          Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                          Comment


                          • #14
                            Mary,

                            My many thoughts, good wishes and prayers for you as you start this new journey toward a better quality life. Stay strong!
                            Dolly~
                            mom to Andrew(HCM) 21 years old
                            Diagnosed \'95 age 5
                            Myectomy \'96 age 6
                            ICD implant \'99 age 9
                            First ICD shock (X2) \'04
                            ICD replacement surgery \'05 age 15

                            *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

                            Comment


                            • #15
                              Mary,

                              Boy did I miss something big when I was out for surgery. I am so glad to hear that you are on the journey of recieving the gift of life. When I was at Mayo I noticed that they do a ton of heart transplants and they had a map of everywhere those people lived. I was stunned and impressed. Keep very positive thoughts going. I'm sure the wait will be difficult but take it all step by step. You can do this thing!!!

                              I will be praying for you!

                              John
                              41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005

                              Comment

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