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16 year old,what to expect? what to do?

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  • 16 year old,what to expect? what to do?

    Hey everyone,
    I'm a 16 year old boy who has been living with HCM for about 3 years now and have been doing fine. My doctor did tell me to stay away from strenous activities and I have been doing that. Just a couple weeks ago though I went in for a normal stress echo test, and it appears my septum is grown and the surgeons believe surgery is the course to take. I'm kinda bummed out since it will probably ruin my summer plans as I'll be recovering. I was just wondering if there was anyone whose undergone the procedure and can give me heads up, or anyone whose gone trough other procedures to help. I would realy appreciate the help, because I dont know anyone whose ever had HCM save myself. Any teenagers especialy and people who have done myectomy or ablation?


    Sincerely,
    Steven

  • #2
    Re: 16 year old,what to expect? what to do?

    Hi Steven. Sorry to hear that you might need surgery. That will change your plans. There are numerous people on this board who have had a myectomy. If you use the search function you can chase down any previous threads until people get around to answering your post. I wish you much peace as you face the future. If you indeed have the surgery keep us posted.

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

    Comment


    • #3
      Re: 16 year old,what to expect? what to do?

      Hi Steven,
      First let me welcome to the boards. I must say, for a sixteen year old you seem to have an excellent command of the English language. It is most refreshing to see.

      I’m sorry to hear that you might be facing surgery, but take heart, if we use common sense, almost all of us die from old age. By all means check out the information available on this site, both posted in the front, and using the search function, the various postings on the subjects of interest to you along with the various surgical procedures.

      If you’re looking for further guidance I would suggest contacting Lisa Salberg, our resident super woman. She is extremely busy for the next couple of months, but I’m sure she would want to help you all she can – and she is amazing. Write her a PM – Private Message – giving her all the information you can; where you are located, who your doctors are, what procedure are they recommending, where do they suggest having the procedure done, any and all information you have on the echo results, and any questions and concerns you may have. Also ask her when would be a good time for you to call her on the phone so you can talk with her personally.

      In this world we do what we’ve got to do. It’s not always convenient, and sometimes it can get pretty rotten, but the measure of a man is shone most clearly in the face of adversity. Good luck with your choices, - and in the future. Please keep us posted on your progress.
      Burt

      Comment


      • #4
        Re: 16 year old,what to expect? what to do?

        Burt - I love all the new titles you create for me...I just hope I can live up to them all!

        Steven,
        Welcome to the board and may I say I too am impressed with your posting. Believe it or not I have heard of many people haveing very short recovery periods...as little as 2-3 weeks others talk longer as much as 6-8 weeks. The most important thing is WHERE you go. It is important to go to a center that has years of experience in the procedure.

        I would suggest you and your parents contact the HCMA office and we can give you all the names of centers who excel in this procedure.

        Hang in there - your summer need not be a bust...

        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
          Re: 16 year old,what to expect? what to do?

          Watch out Lisa – the next time I might use all caps.
          Burt

          Comment


          • #6
            Re: 16 year old,what to expect? what to do?

            You are simply too much
            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: 16 year old,what to expect? what to do?

              Steven, Welcome to the message board. Best wishes as you and your family work your way through this whole thing. I'm sure you will find much encouragement from our group. I hope you and your family are able to talk with Lisa soon. You'll be pleased with all the info she can give you. Linda

              Comment


              • #8
                Re: 16 year old,what to expect? what to do?

                Hey everyone, thanks for the advice, it really does mean a lot to me to see people taking time to answer these messages. Thanks also for the compliments on my grammar... laugh out loud. Anyway, seems like my surgery might not be as pressing as originally thought. It seems as though, the doctor read the echo in a cursory manner and he might have jumped to conclusions. After looking carefully at different angles he actually thinks that the septum had not grown to much, so maybe increased dosage will help, and my summer can still be salvaged. Anyway, i'll post when I know if the surgery will be needed for sure, i'm due for an MRI next week, and then if the misdiagnosis was true, a new dose of medicine will be given to me and a follow up stress-echo.Hope all turns out well, thanks for the support!

                Steven

                Comment


                • #9
                  Re: 16 year old,what to expect? what to do?

                  Hi Steven. Do you mind telling us where you are, meaning where you go for treatment? I'm just thinking about where some of the best HCM centers are. Good luck! Here's hoping for a great summer!!!

                  Reenie
                  Reenie

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

                  Comment


                  • #10
                    Re: 16 year old,what to expect? what to do?

                    I live in Los Angeles, and go to UCLA medical center for all my appointments.I've only head of the Mayo clinic in Minn., are there other big ones also?

                    Comment


                    • #11
                      Re: 16 year old,what to expect? what to do?

                      Actually, there is a specialist in Huntington Beach (I think) who sees patients. There are other major centers too, but they are east of the mighty Mississippi. I would suggest you call Lisa Salberg, like others have mentioned. She will call you back if you happen to not catch her at the office. She's usually in the office on Tuesdays and Thursdays. The phone # is at the bottom of every page.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Re: 16 year old,what to expect? what to do?

                        Hi again Steve,
                        You say you’re being seen at UCLA. My wife was seen there for a few years for a neurological problem. While there, she was seen by an intern. A number of interns were seeing patients, and then they would all meet with their professor, discuss each patient’s case and determine what to do next.

                        It was an excellent teaching method, but the floor in the system was that it depended on the intern’s ability to observe and accurately report to the professor all the ramifications of the patient’s condition. When my wife’s intern finished his residency she was assigned another, and this resident unfortunately did not measure up. Consequently we rattled around for awhile with private practice doctors until we found another half decent neurologist.

                        From your description of what is going on, I wonder if you too are being seen by an HCM specialist or by an intern. – For example, what HCM specialist would say your septum was greatly enlarged and you needed surgery in the very near future, - then turn around and say, “Well maybe it isn’t so much enlarged after all. Let’s run another test and see if you need surgery at all, or possibly just a change in your medication.”

                        Steve, I’m sorry, but I have dealt with a lot of doctors for a lot of years, and that scenario makes me very skittish. I would strongly suggest that if you’re being seen by an intern, or a doctor not fully conversant with HCM to go out and get yourself an HCM specialist.

                        By all means get the MRI (noisy as all get out, but totally painless) and another stress echo, if that’s what they advise. This will provide useful information about your condition whether you decide to stay or to go.
                        Burt

                        Comment


                        • #13
                          Re: 16 year old,what to expect? what to do?

                          And be sure to ask for, or have your parents ask for, copies of all test reports rather than just taking the physician's word for the results. That way you can share information with Lisa about appropriate referrals. Also you can begin your own medical file so you can track changes and begin to learn to take responsibility for your own health care. Sometimes with this condition, with all the information now on the web (thanks Lisa for this important piece), we know more than the doctors do. You will find they are usually more interested in cardiovascular issues than cardiomyopathy.

                          My very best wishes to you,

                          Sue

                          Comment


                          • #14
                            Re: 16 year old,what to expect? what to do?

                            Burt- I am being seen by the head cardiologist of the pediatric divison at the hospital so its not like your wifes' situation with the interns. In fact, I haven't even seen any interns in his office. He isn't an expert about HCM per say, although he has conferences every monday with the whole cardiology staff and they talk about patients they have issues about to the specialized staff.
                            PS- I had an MRI today, and they looked at my heart in the 3-D manner to see if the septum has grown. Im anxious for the results and hope for the best

                            Thanks everyone for the support,
                            Steven

                            Comment


                            • #15
                              Re: 16 year old,what to expect? what to do?

                              Good News,
                              the surgery is off for now, as my medicine is increasing and Im getting a defibrilator installed in a couple weeks. Any know about defibrilators, what they do? What is the procedure?
                              Steven

                              Comment

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