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My HOCM Story


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mhurley Find out more about mhurley
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  • My HOCM Story

    Hello Folks

    Guess this is where we tell our stories and many of yours have grabbed me. I want to shout............That's exactly what is happening to me! I know how they feel...what they are experiencing!

    My name is Mark Hurley. 43 year old project engineer for a construction company. I live in West Central Arkansas and was diagnosed with HOCM in 1998. ICD implant in 8/2000.

    My family has a history of cardiomyopathy. Grandfather died in 1963 at the age of 43 during experimental open heart surgery. He had "an enlarged" heart. Mother passed away in 1992 at the age of 49 with suspected HOCM that was not clearly diagnosed. No autopsy was performed to verify. My cardiologists strongly suspect that they both had HOCM.

    I have been on various doses of atenolol, rhythmol, sotalol, tiazac, and verapamil. Currently take 50 mg/day atenolol, 320 mg/day sotalol, and 180 mg/day verapamil.

    During my late twenties and early thirties, the family practice physician diagnosed me with exercise induced asthma for my shortness of breath while swimming and jogging. The prescription was for an albuterol inhaler. It took care of the problem for several years tho I now laugh at the risk I was inadvertently taking.

    In the summer of 1998, I had an episode of a severe headache due to dehydration while working my yard in the 110 heat. Nothing touched the pain so I went to my GP and he announced that I had a heart murmur that he had never heard before. He heard it because my heart was working overtime to cool off. Sent me to a well respected cardiologist in Little Rock.

    After a stress echo, the doctor advised that I had IHSS (Idiopathic Hypertrophic Subaortic Stenosis.....today known as a form of HOCM) and asked how often I had problems with atrial fibrillation. I had no clue what he was talking about........never had an episode. He asked about sob, fatigue, etc. No problem with my exercise regime of 3 miles walking 4 times/week and 1 hour of swimming twice a week. He put me on a small dose of atenolol and told me to stop jogging and swimming. Within 3 months of the diagnosis, I began to have episodes of rapidly conducting afib. Over the next 2 years, the episodes came on a more regular basis. The dosages and types of medicines were changed with varied success. Multiple trips were made to the emergency room with drugs to slow me down and get back in rhythm. Even had an ambulance ride to Little Rock where I was cardioverted after verifying that I did not have a clot swirling in my heart. That was a treat!

    After this episode, the doc sent me to one of his electrocardiologist partners. He decided that I needed a life safety device in case my afib spontaneously changed to ventricular fibrillation. They also put me on atenolol/sotalol/tiazac to prevent the rapidly conducting afib. This managed the symptoms for 2 years..... I still had some episodes and hospitalizations, but they were less frequent.

    In October of 2002, my 5 year old daughter was diagnosed with brain stem glioma. Thoughts of my problems went on hold. I don't even remember having many problems during the next 18 months. I did notice that I was having problems keeping up with my wife when we went on our evening walk. Life revolved around my daughter. She passed away April 30, 2004. Three days later, I was in the emergency room with the rapidly conducting afib.

    After much trial and error....(.i.e. inappropriate therapies from the device)...and changes to the medications, the docs found that they could stop the afib. Just take enough beta blockers and calcium channel blockers to stop a train and keep the pacing function of the ICD set to 70. Voila.....no more afib...........except.........now the problem has become the sob, dizziness, falling asleep at my desk, the mental stress of knowing you are sliding downhill, etc. I wrote it off as a side effect of the medications. It finally became unbearable. Walking out to the barn would leave me leaning against the wall trying to catch my breath. Standing up from a sitting position was an adventure in postural hypotension (blacking out). The trepidation you feel at the prospect of walking to the mailbox. Will I make it? After supper, no choice but to sit still for a few hours while my heart spent it's energy on digestion. None left for moving around. Your family and coworkers watching you all the time. Overall lack of independence in my life. You get the picture. I know you do. You've been there as well.

    Finally, my ecp told me about a new treatment for atrial fibrillation that was being performed by Dr. Natale at the CCF. It gave me great hope for the prospects of having the afib cured and getting off the meds. I was referred to Dr. Natale in August of this year. The insurance company approved the referral (important point here!). Dr. Natale and his nurse told us of the wonders of Pulmonary Vein Antrum Isolation. We just had to do one little check to make sure that I was a candidate for the procedure. Lo and behold the new echo showed that my HOCM had progressed in the last year. Mitral valve regurgitation had gone from minimal to 2+. The radiologist told Dr. Natale that the afib problems were completely secondary and that I needed immediate treatment for the HOCM. Dr. Natale told me about alcohol septal ablation and myectomy with a maze procedure. Dr. Lever would have to determine which was appropriate.

    The appointment with Dr. Lever was scheduled for October 19. Ten days before the appt., I received a letter from the insurance company denying the benefits for the visit with Dr. Natale. It turned out to be a coding error with the referral number. Typical red tape. However, it made me ask about the upcoming trip to see Dr. Lever. I was then informed that I would need to get a second referral for the new appt. The phone went into overdrive as I called my ECP and PCP to get the paperwork completed. Note that we had already spent the $800 on plane tickets. The nurse with my ECP set up a quick appt. for October 11th so the doc could review Dr. Natale's findings.

    The ECP reviewed the records and advised that he was still referring me to CCF due to their expertise in dealing with alcohol ablations and myectomies. There may have been one or two doctors in LR who had performed the myectomies in the past, but not on a regular basis. He dictated the letter to the insurance company and all appeared well.

    Two days before my CCF appt., I received a call from the ECP insurance dept. My insurance company had denied the referral to Dr. Lever. They wanted to know why I had not been referred locally for a "standard" ablation in lieu of alcohol. Yepper. A clerical position was trying to make a decision on a professional issue. I told the lady that I was obligated to the appt. and asked her to do the best she could with the insurance gurus.

    The appt. with Dr. Lever went great! He is an incredible person. My wife and I felt an instant respect for him. His demeanor, candor and no nonsense approach to issues left me feeling that I was in the right hands to get the job done. You get no wishy washy opinions from that man!

    Dr. Lever advised that alcohol ablation was out of the question. I need a straight forward myectomy with the maze procedure. No ifs and or buts. The myectomy will take care of most of the HOCM problems. Possibly allow me to get off the meds! The maze has an 80% chance of taking care of the afib. It was music to our ears that somewhat drowned out the apprehension of having an open heart procedure. He said that I would be contacted in the next 2 days by the surgical department to schedule a procedure for "sooner rather than later". Before we left, Dr. Lever gave us a pamphlet about this website and organization.

    The next morning, I received a call from Dr. Smedira's nurse. She gave me the surgery schedule. NOVEMBER 4th....... it really struck home.... this was real. I received a FedEx package the next day with schedules and literature. Dr. Smedira's credentials instill nothing but confidence.

    The last few days have been spent agonizing over the insurance. The company has found a doctor in Little Rock who has done the procedure before.........they want him to do it since it would be IN Network. I know NOTHING about him. I have been on the phone constantly with the ECP and PCP office checking on the referral approvals. The insurance company has pre-authorized as an OUT of network surgery. The ECP insurance dept. called back and gave me the names of 2 surgeons in LR who are IN network. I have asked why the ECP would send me to Cleveland and now appear to backtrack. He told me that they did not do the procedure on a regular basis locally. No response at this point. My original cardiologist will have office appointments in town tomorrow so I hope to get some answers.

    I sit here on a Wednesday (10/26) night. Still in my office. Typing to a message board. I know the White Sox are on but I must finish. Thinking of a life decision in front of me. Do I proceed with CCF and face being responsible for all the charges above "reasonable and customary"? Spend the 401k and savings built for my family over the last 20 years? Or do I cancel the surgery and start down an unknown road with a local surgeon? I thought just dealing with the concept of the surgery would be the hard part.

    My ECP would not have sent me to Cleveland without a good reason. Dr. Lever would not have set me up for a surgery 2 weeks after I saw him without good reason. The CCF people inspire me. They can help me. I want to be here when my daughter graduates and has her own family. I suppose my subconscious mind made the decision instantly. Hopefully, I can get the insurance taken care of in the next 3 days before we are scheduled to be in Cleveland.

    Thanx for reading my story!

    Wish Me Luck!

  • #2
    Hi Mark. Welcome to the HCMA. I see you're going through some really soul-searching times right now. My personal opinion is that there is no way I'd allow a local doctor who's "done this a few times" touch me for a procedure like this one. CCF is a great facility and you should have great confidence in them, as you obviously do. I believe things have a way of working out for the best. I think that if you get a patient liason involved you can get your insurance company to pay for this at CCF. Best of luck to you and I hope to hear about your recovery very soon!


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


    • #3
      Mark - Don't let your insurance co. strong arm you into having your surgery locally by a doctor who might have seen one of these surgeries on tv. This is serious stuff. Cleveland is the BEST and they are one of the only places in the country that can do this stuff successfully. You may have to argue and fight with your ins., but ultimately they should cover your surgery at Cleveland. It may not be easy, and it will be alot of headaches, but it is your life, and you only have one of them. I promise you it will be worth the trouble to fight the red tape. I am sure that your local cardio and Cleveland will help you deal with your ins. Eileen 2345 on this board recently had a myectomy at Cleveland with no insurance at all, and they were willing to work with her. You just have to make yourself a pain in the rear of your insurance co. and follow up again and again. Also, if you haven't spoken to Lisa Salberg, president of the HCMA, I advise you to call her. She knows lots about this stuff and can also be of assistance to you. Please, its well worth it for you to fight this fight. You only have one life. Take care of it.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


      • #4

        I can sympathize with your situation. I went out of network to Mayo Clinic last December for diagnostic tests (including angiogram/cath). I had nightmares for awhile about the charges from the Mayo Clinic not being accepted as "reasonable and customary." Virtually all of the Mayo charges in our case were accepted at their face value, however I had to go-around with the insurance company for 3 or 4 months until they accepted the majority of the charges as being medically necessary and/or not duplicate charges. For example, I had an echocardiogram during the first day of testing and a second echo was done during the cath procedure to guide a biopsy probe. They didn't want to accept the charges associated with the 2nd echo (both "lab" and professional services) for the longest time. You can get it done, but expect some frustration at times. Get help from the CCF billing folks in getting invoice details, copies of insurance billing info, etc.

        FWIW, Mayo was out of network for Aetna, but as of the 1st of this year we have Blue Cross and we would have been in-network.

        I'd only go with an experienced center on this one.

        Feel free to e-mail if you have questions.

        Good luck,
        Rob Thomas
        --Living life on the edge .. of a continent!
        Charter member: Tinman Club


        • #5

          Welcome -
          We Understand -
          simply stated...follow your heart.

          You know what is best for you - let the CCF fight the ins. company for you. Call the office I would be happy to write a letter to your insurance company to let them see that this is really the most cost effective way to handle your complicated medical situation.

          Be well,
          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)


          • #6

            Welcome to the board!

            First of all, you are NOT going to have a myectomy in Little Rock, Arkansas. We simply won't let you. As your fellow HCM'ers and myectomy veterans, we would rather see you spend your life savings and live to be 80 years old, than get insurance coverage to have a myectomy at an inexperienced hospital. Yikes! I cringe at the very thought of it.

            I have what is undoubtedly some of the worst health insurance on the planet, yet I was still able to get coverage to have my myectomy at the Cleveland Clinic. In my mind, my insurance company saved money by having my myectomy done right, rather than having to pay for complications down the road. There is a way to make this happen for you, it just may take some time.

            You may have to postpone things until you get the coverage you need for the surgery. The Cleveland Clinic doctors are some of the best in the world and they move fast. They want to get you in there and get you fixed up as soon as they can, which is certainly to their credit. Unfortunately, that can leave very little time to get your financial situation in order prior to surgery.

            It would be better to slow things down a bit if you have to, and get the coverage you require first, rather than being stuck with a pile of uncovered medical bills. Assuming that this is not an emergency, the docs at CCF will work with you. You need to be concerned about preparing for and recovering from surgery, not how you're going to pay the bills afterwards.

            Dr. Lever himself made a few calls on my behalf and lit a fire under my local doctors' butts to get me the referrals and insurance coverage I needed for Cleveland. Call his office today and let them know you are having insurance problems and may have to postpone your surgery. I can almost guarantee you the man will be on the phone knocking some heads together on your behalf. The guy kicks @ss... he really does.

            Any of us who have been to Cleveland for myectomies will tell you that there simply is no better place to go. Please let us know how things work out for you and/or if there is anything at all we can do to help.

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


            • #7
              Hi Mark-

              We all do know what you're going through. Before I knew of the HCMA, my husband, Alan, was set up for Cleveland Clinic. Insurance said no - we caved in and went to another center. After going to the HCMA annual meeting and getting together with the right people, we have fought -and won-
              Alan's right to go where he is taken care of best. I know we can't go back, but if we could, I would have gone into debt for the next hundred years to have gone where we should have. Best of luck to you!!



              • #8

                Please allow Lisa to write the letter and allow the CCF to fight the insurance company for you.

                You MUST go to the CCF with Dr. Lever and Dr. Smedira. They are the best -- The Absolute BEST.

                Trust me, I know, they treated me and I am like a new person.

                Do not give up.

                (And by the way, welcome to the board.)

                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.


                • #9

                  I wholeheartedly agree with what everyone else has said here. You need to go where you can get the best care possible for yourself. Push the insurance company - you have to go to a specialist!!! look into all avenues and utilize your resources (Lisa would be a great one).

                  Best of luck to you and keep us all updated - welcome to the HCMA too!
                  41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005


                  • #10
                    Thanx for the notes & wishes!

                    Quick update on my long winded note above. The Cleveland Clinic insurance dept. called today to inform me that they have run into a complete roadblock with my insurance company (QualChoice). The lady gave me the number to call and cancel my surgery and stated that a financial adviser would call me. It is my choice...........thanx a lot.

                    I called the LR cardio surgeon's office (C.D. Williams) to schedule an appointment. Next Tuesday afternoon. Dr. Williams is the director of cardiac surgery for the Arkansas Heart Hospital.....which my insurance company does not cover.....but lo and behold a few silver linings have popped up. A new law in Arkansas requires insurance companies to approve "willing providers".....Arkansas Heart Hospital will accept QualChoice...therefore they cannot force me to go to another hospital.... second ray of sun to help clear the clouds. Dr. Williams does 5-6 myectomies every month. He is one of 2 doctors that do them in the state. Third ray of sun.... I was chatting with a doctor friend of mine today...turns out that her husband...also a doc had heart surgery 3 weeks ago with Dr. Williams......she went to medical school with him in Texas and would not let anyone else touch her husband.... I will wait and make a decision next week.

                    Wonder if my cardiologist will pay my expenses for the last trip to Cleveland........... HA

                    Take Care



                    • #11
                      5:00 pm Update

                      Here is the latest in the fast moving saga. I called Dr. Lever's office to get a copy of my records faxed to me. His assistant asked me what was going on and we discussed. She asked for the name of the person in charge at the insurance company and said that she would send a letter direct to them. I called her back with the medical director's name at QualChoice. She told me that Dr. Lever wanted to talk to me. He was adamant that I not have the surgery in Little Rock. Only 2 centers can handle these cases.....CCF and the Mayo.....he did mention a couple of others that have become involved in recent years. Hire the barracuda to get after the insurance company and have them call him for support. Tomorrow promises to be another day of fun and joy. Heading home for the evening to spend some quality time with the family. Thanx for your thoughts, prayers and advise.


                      • #12

                        Your HOCM story sounds a lot like mine.

                        I have UnitedHealtcare and they are being stinkers about what I can and can not do. One of the bad expericences that I have had is nobody has an answer for me. It is more about me needing a heart bypass then a myectomy. I have also listend to enough elevator music to last for the next 3 years. The one thing that has seemed to help me is that the Dr at CCF work for CCF and are not sub-contractors, I dont know if this will help or not. I also work for a big company and the open enrollment for insurance will be open in November, then I will have to wait until January to get-r-done. I have time to wait, you may not.

                        Good Luck

                        Every day is a present I was diagnosed when I was 38, I have asthma which made me assume it was ashtma, getting old, and being about 30 lbs over what I should be. I have days when I would rather not know. Myectomy club 3Jan06 CCF, my life is so much better!!!!


                        • #13
                          Amen to what Dr. Lever said. Please listen to him. Don't go to the doctor in Arkansas. Cleveland is the best. Fight the fight. Its worth it.
                          Daughter of Father with HCM
                          Diagnosed with HCM 1999.
                          Full term pregnancy - Son born 11/01
                          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


                          • #14
                            Mark, I have to say this insurance stuff is a bunch of garbage. The whole world pays them money every single month and yet they do everything possible to not DO what they money is intended for.....pay for health care.

                            I am fighting my insurance company right now, Humana. I live in Cincinnati and went through the proper channels and was pre-approved to go to CCF for myectomy/mitral repair. Dr Lytle was my surgeron and Dr Lever my cardiologist. What fabulous care I received. Cincinnati has done some of these procedures but my local cardio said no way you are having this done here which of course was backed up by Lever. So, all said and done, had surgery on 7/19 and can you believe that Humana has not paid one red cent to CCF. We are on the phone all the time as bills keep coming and piling up with no payment. We talk to a different person everytime that says, 'ok, i'll take care of it', yet nothing is ever paid. CCF of course wants paid and we have received notices that we will be sent to collections so then we are on the phone with them and they say 'ok, we understand, as long as you keep calling, we know you are making an effot with your insurance.' What a bunch of worrisome, stressful mumbo jumbo.

                            My husband works for a large company and we are in the midst of open enrollment and considering United Healthcare as CCF, Lever, etc and my local cardio are considered 'in' network, but I know UHC is probably no better than all the rest, confirmed by a previous poster. We are going to try it and hope for the best.

                            Bottom line, as everyone else says, if at all possible, even if it means waiting a little longer, fight for CCF....hate to say that your life depends on it......... Not to say that other surgeons are attempting to perform the surgery and do it well, they must try somehow, but I wasnt one willing to be a newbie to someone, others have and have had success, you must feel extremely comfortable with your decision......EXTREMELY SO.

                            Last comment: Dr Lever says they see a TON of cases every year that are botched cases from other hospitals all over the world, not just the US.
                            Tell that to your insurance, they pay for Arkansas and then turn around and pay for CCF when you have problems.

                            Best of luck, Laura
                            Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.


                            • #15
                              Surgery to be cancelled for now

                              What an up and down week........that has ended on the down.

                              Dr. Lever's office faxed my records to the medical director of the insurance company. I called to talk to him but the front office refused to put me thru. They did not know if he had reviewed the files. They would not take Dr. Lever's numbers and call him. "We don't call the doctors....they have to call us". Dr. Lever called QualChoice and then called me.............the insurance company basically told him "tough sh..". They will cover me as OUT of network......that's what is in the contract. There is a physician locally (Little Rock) who can do the procedure. That leaves me responsible for the amount between "reasonable/customary" and the amount CCF will charge.

                              Dr. Lever has really gone to bat for me. He is trying.

                              I am now trying to find out what QualChoice considers to be reasonable and customary. That will take a bit. Check to see if CCF can work with that.

                              In the meantime, I am planning to call CCF and cancel my procedure for next week. We need some answers before we proceed. How much exposure do we have? $50k? $100k, $200k? I have no idea....

                              Thanx Laura for your note..........I really understand what you are dealing with. Good Luck with Humana.

                              Take Care