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My first post, hope I don't over-do it

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dblomom Husband diagnosed w/ HCM May, 2001 at age 26 ICD implanted July, 2011 "Double" Myectomy, January, 2013, performed by Dr Schaff @ Mayo Clinic, Rochester, MN 2 kids, 12 & 9 currently cleared of HCM Find out more about dblomom
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  • My first post, hope I don't over-do it

    After viewing (ok stalking) this website for a couple of years, I'm making my first post. I am married to a wonderful man who is the father to my 2 beautiful children. We have been living with HCM for 10 1/2 years now. My husband was diagnosed when I was 8 months pregnant with our first child. He was push mowing our (small) yard and collapsed. He was 26 at the time.
    Fast forward 10 years...2 moves and 2 children later, this past July he had a pacemaker/defibrilator implanted. I'm not sure if we're ignorant or in denial, but so far it seems like it's "no big deal". My husband is active, fit, can't sit still. It was a shock that his "new" doctor insisted it be done. We moved to Oklahoma from Wisconsin and at my urging, he got in to a new Cardiologist right away. The kids and I stayed in WI (selling a house, finishing school) and by the time I came to OK 4 months later, his surgery appt was set. Being only 37 and in relatively good health, he recovered quickly. His main complaint is that the site is sore. He's lean and the device sticks up quite a bit. We would have done this at any cost, but it's amazing what the charges are!
    My children have seen a Cardiologist every-other year since their dad was diagnosed. Everything is always fine. Once we moved to OK, I got them set up right away (I was a year over-do in getting their appts done ) They received a clean bill of health and I was told they didn't need to come back until they hit their growth spurt.
    I have 2 questions:
    1) what is a "community" thought on genetic testing? The pediatric cardiologists we've seen nearly insist it be done, but I have yet to do it.
    2) has anyone had any experience getting insurance to cover testing in the pediatric cardiologists office? Specifically, all of the times in the past, I've paid the "Specilist visit" copay and been done. But this time (new Cardiologist, new insurance), I'm being billed for the procedures as the insurance is stating it needs to go against our deductible. I'm in the process of writing an appeal to the insurance, but am lost. The cost we are still paying on my husband's surgery is pretty substantial and then to be "surprised" by this add'l cost was not what I was looking for as a "Happy New Year" surprise. If anyone has had any experience with an appeals letter, thank you in advance for any advice (even if it's bleak!) you may have to offer.
    I've enjoyed this site to much and hope to become better familiar. Thank you for allowing me the time to write about my family.
    Amy
    Husband diagnosed w/ HCM May, 2001 at age 26,
    he is now obstructed. ICD implanted July, 2011,
    myectomy scheduled for Jan, 2013 w/ Dr. Schaff
    Mayo Clinic, Rochester, MN
    2 kids, 11 & 8 currently cleared of HCM (genetic testing
    to be done at Mayo visit)

  • #2
    Re: My first post, hope I don't over-do it

    Hi there and welcome! I had our kids tested every 12-16 months too. Then I managed to get my gene uncovered and had my children tested. They are both negative thank God. I presented it to our insurance this way. You can pay $1200 per kid every 12 to 16 months until they are 25, or we can pay $5000 to have the genetic testing done. Which do you prefer. They chose the testing. I know not every company will do that, but if you can "know" it does eliminate some other worries for you. And kudos on your husband getting his ICD. I know a man who, while having HCM seemed to be just fine and lived for 20 years with an ICD. The only time it fired was last year and it saved his life! All the best on your journey.

    Peace,

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

    Comment


    • #3
      Re: My first post, hope I don't over-do it

      Hi Amy,
      Welcome to the board!

      On question 1, genetic testing of the kids makes sense if you first test your husband and they identify a mutation that contributes to HCM. If they do that, then they know what to look for in your kids (which makes it easier/quicker/cheaper to look for in your kids), and I think it's the case that many insurance companies are more likely to cover it.

      On question 2, others can comment more usefully than I can.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment


      • #4
        Re: My first post, hope I don't over-do it

        Welcome Amy !!
        Onward and Upward !

        Diagnosed 4/07 HCM with fixed & dynamic obstruction
        Myectomy with resected cordonae tendonae 4/08 CCF
        ICD 10/08

        Comment


        • #5
          Re: My first post, hope I don't over-do it

          Welcome Amy (and family). Please call the office to ask about genetic testing programs. Some may be able to work better with your insurance - or they can guide you on how to present it (similar to what Leon did).
          Marc
          Diagnosed @ 48
          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
          AICD - Valentines Day '08, Spark Plug replaced 11/14
          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
          Quietly going insane . . .

          Comment


          • #6
            Re: My first post, hope I don't over-do it

            Welcome Amy, I will address your large bill. It may be that the office that did the testing bills as outpatient and not as an office setting . Big difference in the insurance companies eyes. I would start with the Dr and see how it is billed out and then look at your insurance benefits.
            Midge

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

            Comment


            • #7
              Re: My first post, hope I don't over-do it

              Hi,
              I have HCM and we pinpointed our family gene with my mom...we had our two boys tested and both are positive. It's a great thing to know because we are watching them closely, at ages 7 and 9, and they have echo's yearly and will continue to do so. Our genetic testing was relatively inexpensive only because the gene had been pinpointed already, so we only paid $250 per child. I know it's much more than that to pinpoint a gene. You can always check with your insurance company to see if they cover it, I know that my husband's insurance through his work covers genetic testing under certain circumstances- and I like the way it was explained above to maybe get the insurance company to pay if they won't.

              As for your bills....when I go to Mayo and when we had my son seen up there last year (I go yearly), they bill all of their echo's as outpatient and because of my insurance, I pay more when it's billed as outpatient. My son's echo cost us $1300 up there, after insurance. When we have echo's with our local pediatric cardiologist (who is wonderful), we only pay our copay, which after it goes through two insurances, is $15. That's a pretty significant difference and the only way I can explain why is that one place bills it as outpatient while the other bills it as a doctor's visit which is just a copay with our insurance plan.

              Good luck!
              Kaye
              Last edited by mandksiders; 12-29-2011, 05:47 PM.

              Comment


              • #8
                Re: My first post, hope I don't over-do it

                Welcome Amy,
                I also am new to all this blogging and things, and how your story sounds almost just like mine. We live in Colorado and have had the best treatment at University Of Colorado Hospital in Denver. My husband is 30 and just recently had the pacemaker/ICD placed in sep and then had the Septal Ablation done in Nov. The Doctors there helped to explain the process of genietics to us. First you husband needs to have the test ran which would be done through blood and if they are able to identify the strand of DNA of the type of heart disease he has then your children would only have to undergo a cheek swab. Also explained to us was that like previously stated the cost. If the gene is not identified in the children then they do not have the disease. Where as, If they carry the gene they are not confirmed of the diease untill it shows up on an echocardiogram. Here is the name of a guy with a geneitcs company that i spoke with that helped me out a ton
                Sean McEvoy

                Business Development
                Manager-Genetics

                [email protected]

                415-209-8137

                Also here is the name of the genetics counsler that has helped us with our process.

                Jean Jirikowic, MS, CGC
                Genetic Counselor/PRA, Adult Medical Genetics Clinic
                University of Colorado Hospital
                720.848.6521-office
                720.848.0469-fax
                720-848-0782-appointments
                email: [email protected]

                Hope this helps!!

                Comment


                • #9
                  Re: My first post, hope I don't over-do it

                  Our family also used genedx services as listed above. We were told by the HCM specialist center that they are the cheapest.

                  I have also written many appeals and I work in a hospital setting so if you need any assistance please feel free to send me a personal message and I would be happy to assist.
                  Dx 1995 with non-obstructed HCM, verapamil 120mg
                  2004, ICD, battery recall and migration x2 (3 surgeries)
                  2007, 26 inappropriate shocks fr. Lead failure, two lead extraction surgeries...(total 8 surgeries in 4 years NO FUN)
                  Since 2008, Living without ICD.......
                  2011 First chest pains, frequent Began thinking about new ICD,,,,
                  10-2014 I'm ready!

                  Comment


                  • #10
                    Re: My first post, hope I don't over-do it

                    Amy:
                    I just talked to my cardiologist about genetic testing at my appointment two weeks ago. He also steered me to GeneDx. He said it wouldn't cost more than $100 and that my insurance would most likely pay for it. I'm under the impression that's true for others, too. That figure would only include your husband's testing, but I believe that is the most costly test. If they can identify his genetic marker, the kids can then be tested.

                    It sounds like you are doing a good job of keeping on top of things. Best wishes for good reports!
                    Karen
                    Last edited by knewstrom; 12-29-2011, 10:53 PM. Reason: additional info

                    Comment


                    • #11
                      Re: My first post, hope I don't over-do it

                      Amy,

                      I think you'll probably get some different opinions on genetic testing from those reading the posts, but I'm with those who have already replied. My husband was diagnosed with HCM last year and we just had our two children genetically tested. Our local doctors (pediatrician, pediatric cardiologist, and my husband's cardiologist) all were against having the test done for the kids, as was my husband initially, but I really wanted to do it. I just figured that it would be better to know one way or the other. If the tests came back positive, nothing really would change for the time being - we'd just continue to do yearly screenings - and if the tests came back negative, we'd be done with it and not spend years screening and wondering if the kids were ever going to develop HCM. When my husband went to Cleveland Clinic for his 2nd opinion, we both agreed we would do whatever they recommended there, and they did recommend getting the kids tested. One kid came back positive and the other negative. I am glad we know, and as Kaye is with her boys, we are watching the positive one very closely, opting for yearly screening starting now even though said child is only 10. (One note though on if a child's genetic test comes back negative...see my post from a week or two ago on the "Ask the HCMA" board titled "Screening the Genetically Negative," and another note on getting life insurance for the kids before you test...as you've been reading the boards for some time now you've probably seen posts on the importance of getting life insurance prior to testing, but I figured a reminder wouldn't hurt!!! )

                      We did testing through our local doctors and the lab we used was Familion. It was a blood draw for my husband as well as the kids. I wish I had known about GeneDx...sounds much more reasonable, although I can't complain because our insurance did pay for most of the expense. And I'd agree with everyone else that the charges you are paying are probably either the way the new cardiologist's office is billing the tests or possibly the way your new insurance is set up. Hopefully you can work to figure it all out.
                      Last edited by NDFAN; 01-06-2012, 02:26 PM. Reason: typos

                      Comment


                      • #12
                        Re: My first post, hope I don't over-do it

                        I also used GeneDX for our testing. They were able to find my husband's mutation and our insurance paid the whole bill for his testing. When we had the kids screened for his mutation the insurance company wouldn't pay for it, even though I appealed with the same argument that Leon used. I had to pay for them all out of pocket.
                        Reenie

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

                        Comment


                        • #13
                          Re: My first post, hope I don't over-do it

                          Well, sad to say (ok, really just *mad* !) that the insurance denied my appeal. But I did want to take just a minute to thank all of you for your replies, encouraging words and reassurance! We will keep plugging away, and I have a new sense of comfort in this page and the forums. Thank you, again!
                          Amy
                          Husband diagnosed w/ HCM May, 2001 at age 26,
                          he is now obstructed. ICD implanted July, 2011,
                          myectomy scheduled for Jan, 2013 w/ Dr. Schaff
                          Mayo Clinic, Rochester, MN
                          2 kids, 11 & 8 currently cleared of HCM (genetic testing
                          to be done at Mayo visit)

                          Comment


                          • #14
                            Re: My first post, hope I don't over-do it

                            Hey just because they said no doesn't mean they said NO. my S-I-L once worked at a HMO (now defunct) and ran into a guy in the lunchroom. Started a chat and asked what he did there. "I deny claims" he said. Of course her mouth dropped. He explained that his job is to string along clients until they give up or lawyer up.

                            I found this out years ago when I first DX - My HMO denied everything until my doctor sent them a letter - I recommend your doctor write a letter (you can pre-write it for him to put on letterhead and sign). State "that it seems foolish to spend X amount year for X years when a simple test costing X amount could save their company XX amount. Perhaps mention that their stockholders might be interested in this waste of time and money.

                            Good luck!
                            Marc
                            Diagnosed @ 48
                            Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                            Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                            AICD - Valentines Day '08, Spark Plug replaced 11/14
                            After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                            Quietly going insane . . .

                            Comment

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