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  • Husband,46, newly diagnosed, HELP!

    Hello. My husband was diagnosed with HCM Thursday, 5/12/05. We are meeting the electrophysiologist on Monday. He is a truck driver, and has been for quite awhile. Now, he might not be able to resume his job. The cardiologist is quite certain my husband needs an ICD. Can someone assist me in the questions to ask the dr. on Monday. Is this diagnosis a "death knell" for my husband?? I have never felt so helpless..

    Thanks,
    Barb

  • #2
    Hcm

    Dear Barb,

    No! In no way is this a "death knell" for you husband. The vast majority of HCMers live a full life span.

    I know this is all very scary, but the HCMA exists to help you and your family through this confusing time.

    First, you can always call Lisa (the president) for help finding an HCM specialist. This is too complicated and personal to do over the board.

    Second, it is very important to see a specialist as HCM is complicated.

    Third, please read the whole web site--click on the logo to get to the home page and read about the symptoms, treatment, etc. You can also use the Search link at the top of the message board to search the board for posts on ICDs and other topics. There is a treasure trove of info in the board itself.

    As for seeing the doctor, a person usually needs two or three of the following conditions/risk factors to qualify for an ICD:

    Septal wall 3cm or thicker, history of fainting, history of ventricular tachycardia (a heart arrythmia), blood pressure that doesn't go up during a stress test, and a family history of sudden death.

    Find out which factors the doctor is basing his/her recommendation on. Your husband should have had an ekg, echo and a stress test. If not, why not? What is his resting heart rate? Is it normal? Does he have any arrhythmias? What medication, if any, is he/she recommending and why?

    Please make sure that any children are also screened for HCM.

    Most of all, take a deep breath and try and see the good side--they found the HCM so your husband can get the treatment he needs. Something like 90% of the people who die from HCM didn't know they had it.

    As for his career, I can't say if he'll be able to keep. I don't know the rules on that. But hopefully he can and if not, there are ways to get help in re-training for something else.

    hang in there and keep us posted,

    S

    Comment


    • #3
      Hi Barb. Sarah has given you a lot of good advice. I just wanted to add my support and to let you know that we are here for you. I suggest calling Lisa Salberg at the phone number on the bottom of this page. She can help you with questions you have and help you find a doctor for your husband. Feel free to post anything here, too. We're a great support community as well as being here for information. Please let us know how the appointment goes on Monday. Also, if the electrophysiologist suggests doing an EP study on your husband to try to determine his risk for sudden death, ask what he hopes to learn from the study. It has been shown that an EP study isn't a good predictor for sudden death in those who have HCM. A positive study doesn't mean a person will have a fatal arrhythmia later and a negative study doesn't show that they won't. I only tell you this so you have a little information in your mind as you're going in to the appointment.

      Reenie
      Reenie

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

      Comment


      • #4
        Barb,

        Welcome to the site. Sarah has given you all the basis for the information you need to get started. Try to take it slow. IT IS OVERWHELMING ., when you first hear the diagnosis. You will feel less bombarded as a little time passes and more understanding comes. Feel free to ask any questions or to just share your thoughts , fears or to just vent. We are all listeners.

        My best,

        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


        • #5
          Barb,

          Research, research, research. That's what I say. I found out I had HCM in February and have learned so much in 4 months. I highly recommend that you and your husband find a center that specializes in HCM. I've found that most cardiologists know of it, but do not fully understand it. After seeing 2 cardiologists here locally in Denver, I traveled to Mayo Clinic in Rochester and got all the answers I was looking for. Now I can make VERY informed decisions regarding my health care. The best help I have found so far has been on this website. You can search the message boards for info on particular questions you may have. On top of that, you have found an outstanding support group to help you along the way.

          Best wishes and keep us informed on what you find out!

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

          Comment


          • #6
            Barb

            My husband was a long haul truck driver for about 10 years and he has chronic atrial fibulation and takes blood thinners, it never stopped him but he got to keep his CDL, but i would definetly check being he may have to get a ICD that may put a whole new look on things, i hope you get the answers you need and welcome aboard

            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


            • #7
              Barb.

              Most of us are still going strong years after our diagnosis. While each case is different, HCM is not generally death knowking on the door. We welcome you to our online community. Sorry you need us, but very honored to share our journey with you and your husband. I will pray for you and your family.

              Peace,

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

              Comment


              • #8
                Hi!

                I am so very thankful that you found this group!

                My husband was diagnosed last summer, and we also discovered his father had it too ...

                Just like most, if not everyone on this board ~ from some sort of perspective, we can relate to what you are going thru ~ that is one reason why we are all so very thankful you've found the board! There are so many wonderful people who can give so much support, understanding, encouragement, etc ...

                And as everyone reinforces ~ call Lisa ~ she's worked thru all of the emotions will people before, and she'll be great for you too!

                As all of this can be a whirlwind, try to take a step back and remember how lucky your family is, you've been diagnosed (wait give me a second), there are great resources, fabulous doctors who specialize in HCM and lots of people who will be there to support you every step of the way! The doctor's will gain perspective and provide you with lots of info & do everything they can so that your family can lead a happy and fulfilling long life!

                And as for the CDL ~ don't worry about that just yet ... my husband has his CDL ~ and nothing has ever been mentioned, nor does he have to check off anything for his renewal ... You just may not want him over the road any more !

                We look forward to hearing the updates on Monday ... and hearing that you've reached out to an HCM specialist ...

                Know that you are in all of our thoughts and prayers!
                Mechelle
                \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

                Comment


                • #9
                  Re: Husband,46, newly diagnosed, HELP!

                  Originally posted by bas413
                  Hello. My husband was diagnosed with HCM Thursday, 5/12/05. We are meeting the electrophysiologist on Monday. He is a truck driver, and has been for quite awhile. Now, he might not be able to resume his job. The cardiologist is quite certain my husband needs an ICD. Can someone assist me in the questions to ask the dr. on Monday. Is this diagnosis a "death knell" for my husband?? I have never felt so helpless..

                  Thanks,
                  Barb
                  barb,

                  i was diagnosed 2 and a half years ago at the age of 32.5. i was devastated at first and expected to die at any moment. this is a completely natural reaction--especially when you have a condition one of whose *symptoms* is sudden death--doesn't seem like much of a symptom to me! but you should know that as you find out more you will discover that things are not anywhere as bleak as they seem. i had an icd implanted and 2.5 years later i rarely think about my condition on a daily basis. even if your husband has to get an icd it is not a big deal--a very simple operation (outpatient even). since i was diagnosed i know to avoid certain kinds of activities which could be dangerous for me. other than that it has changed nothing. and so i am very glad i was diagnosed. my father, who is in his mid-60s, has it too but he had a very strenuous job for 35 years (far more physically challenging than driving a truck) and never had any problems of any kind--i'm hoping the family connection will finally be good for something for me (after all it didn't do much for me in the money or looks departments).

                  i'm not a frequent poster on this forum but i would urge you to visit it regularly and ask for advice/information. some of the people here are better informed about the condition than most non-specialist doctors, and it is a wonderful support group. i know talking to lisa was one of the best things i did; another was doing something she told me to do: seeing an actual specialist in hcm.

                  give your husband our best wishes and hang in there!

                  mongo

                  Comment


                  • #10
                    Many options, but a likely career change.

                    Barbara,

                    Your husband will in all likelyhood not be retaining a commercial drivers lic. so it would be well advised to begin to look at new options in employment.

                    Re: his future health - HCM is compatible with normal life with only a few alterations in most cases. 1. no competitive sports 2. some jobs may no longer be appropriate due to personal or public safty risk (such as truck driver).

                    Life with an ICD is no big deal - the first few weeks are difficult but after a short while you forget that it is there.

                    Call me next week - we can talk about anything you wish.

                    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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