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New to the boards and I'd like to introduce myself.....

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Matt7682 Find out more about Matt7682
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  • New to the boards and I'd like to introduce myself.....

    Hello everyone!! My name is Matt and my wife found this organization and told me about it so I decided to join. I was recently diagnosed with Hypertrophic Obstructive Cardiomyopathy. From what i've learned I have had it since I was born and it has slowly progressed over the course of my life. I was diagnosed about a week ago and from findings and readings on the internet I now have a pretty good understanding of the disease, its causes, risks, and procedures for curing this disease. The growth on my septum has obstruted the blood flow through my aortic valve. This obstruction has caused some severe leakage in my mitral valve and overall caused my heart muscle to become thickened. I go back to meet with a group of the top Thorasic surgeons at the OU Medical Center here in Oklahoma tomorrow. This is when I will find out if my condition is something they are prepared to deal with or if I must go somewhere like Mayo or Cleveland. Both my wife and I know that God has the ability to heal and that if we put our faith and trust in him then things will ultimatley be okay. Psalms 31:23 states that we are to love the lord and he will preserveth the faithfull. Since neither of us have health insurance this is liable to be a debt we owe for the rest of our lives, but we are ready to do whatever we have to do. I look forward to being a member of this organization and hope i can recieve useful information as well as give it. For those that believe it would be a great blessing to be included in your prayers, and you can be assured you will be included in mine also.

  • #2
    Re: New to the boards and I'd like to introduce myself.....

    Matt,
    Welcome to the board. It sounds like you have taken the time to learn all you can about HCM, I am glad the HCMA could help you learn. It also sounds that you have a great deal of faith and I hope that carries you through your life with HCM.
    I wish you success with your treatment.

    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)

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    • #3
      Re: New to the boards and I'd like to introduce myself.....

      Welcome, Matt. It sounds like you've learned a lot in a short amount of time. Good luck with your upcoming appointment and feel free to post here whenever you want. I'll pray that you get the treatment you need.

      Reenie
      Reenie

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

      Comment


      • #4
        Re: New to the boards and I'd like to introduce myself.....

        Hi Matt!

        Good to hear from ya! It's not easy going without insurance, but it can be done. Most hospitals and clinics offer a discount for paying cash, but they're not going to offer it to you readily, so be sure and ask for it up front. The majority of places i've gone to gave me a 20% discount for paying cash, in fact one gave me a 30% discount. Woo hoo! Boston only gave me 10% off, but it was still something. Also, don't let them bully you into leaving a bigger cash deposit than you can reasonable afford up front... they will take what you give them and pay the rest when you can.

        There are lots of organizations in place to help as well... HCM is recognized as a disability, so if you need it and are willing to look for it you can find help with medical bills.

        If you ever want to chat about 'HCM on a Budget', you're welcome to PM or email me any time.

        Take care,

        Jim
        "Some days you're the dog... some days you're the hydrant."

        Comment


        • #5
          Re: New to the boards and I'd like to introduce myself.....

          Can people from one state file for free care at a hospital in another? For Example if I lived in Florida can I file for free care a NEMC-(Boston)?

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          • #6
            Re: New to the boards and I'd like to introduce myself.....

            Bryan,

            I live out-of-state and went to see the folks at Tufts/NEMC. I was told that i was not eligible for free care since i was not a resident of Massachusetts (good god, did i spell that right?).

            Jim
            "Some days you're the dog... some days you're the hydrant."

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            • #7
              Re: New to the boards and I'd like to introduce myself.....

              Jim,

              Thanks for the response. Thats what I thought but wasnt quite sure.

              Bryan

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              • #8
                Re: New to the boards and I'd like to introduce myself.....

                Me again...

                It was explained to me that money for free care (at least at NEMC) comes from state funding, and that is why state residency is required. If anyone on the board knows of anything different, please post the info. Different institutions may be funded differently, or have different guidelines, so i always ask no matter where i'm at, but what they told me in Boston does make some sense.

                Jim
                "Some days you're the dog... some days you're the hydrant."

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                • #9
                  Re: New to the boards and I'd like to introduce myself.....

                  Matt, Welcome to the message board. We will keep you in our prayers. Best wishes with your appt tomorrow, keep us posted. Linda

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                  • #10
                    Re: New to the boards and I'd like to introduce myself.....

                    Welcome Matt. May you experience much peace as you get used to this "new" reality in your life. Keep us posted as to how things go.
                    Leon
                    God Squad co-moderator
                    Nothing is as gentle as strength and nothing is as strong as gentleness

                    Comment


                    • #11
                      Re: New to the boards and I'd like to introduce myself.....

                      Welcome Matt.
                      As you can see, lots of folks ready to help. Hope all goes well with your appointment. Let us know the outcome. Good luck and God Bless.
                      Reinhard
                      Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
                      Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
                      Non Obstructive. Atenolol

                      Comment


                      • #12
                        Re: New to the boards and I'd like to introduce myself.....

                        After numerous meetings and numerous tests I have found out that surgery may not be the best option for me right now. I am now scheduled to meet with doctor Thomas Henerby to discuss the option of alcohol ablation. I am only 21 years old and I have heard this option is usually geared more towords people that are 50+? But i guess that is an issue i can discuss on my next appointment. I also read in a response to this post that HCM is considered a disability? Can anyone else varify this? Thanks for the help and support. It is greatly appreciated.

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                        • #13
                          Re: New to the boards and I'd like to introduce myself.....

                          Hi Matt,

                          HCM is considered a disability, recognized by the Americans with Disabilities Act, in that it imposes physical limitations with respect to employment, etc. The law provides for certain rights such as accomodations in the workplace, among other things. I lost my job of many years due to HCM because it was physically demanding work which i could no longer perform safely. I was diagnosed last October.

                          Most HCM'ers do not collect permanent disability benefits due to the fact that we are able to work, within the limitations imposed by the disease. The Office of Vocational Rehabilitation has been working with me on retraining (in my case, graduate school) and also provides for incentives to employers who eventually hire me, in the form of substantial tax breaks and reimbursement of wages (up to 40% after six months of employment). There are additional programs available as well, but i don;t want to ramble on too much here!

                          Lisa... can you jump in here and give your take on the HCM disability issue?

                          Jim
                          "Some days you're the dog... some days you're the hydrant."

                          Comment


                          • #14
                            Re: New to the boards and I'd like to introduce myself.....

                            Dear Matt,

                            Please see an HCM specialist. While ablations are very successful for many people, and seem easier than surgery, they are an extremely difficult procedure and need to be done by someone who really knows what they're doing. HCM hearts are tricky and you can't always see all the problems in an echo.

                            Getting the opinion of an HCM specialist is critical to making an informed decision about what will work best for you and to make sure that whichever course you take is done by the most qualifed hands.

                            take care,
                            S

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