Tweet
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!
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!
Comment