Michael is a 30 year old father and step father of 3 boys, Bailey (16), Braydon (10) and Jace (19 months). He has previously spent the last six years working at Mylan Pharmaceuticals and enjoyed various outdoor activities. Michael was born with an an arteriovenous malformation(AVM) in his left leg. An AVM is an abnormal connection between arteries and veins, bypassing the capillary system. Although many AVMs are asymptomatic, they can cause intense pain or bleeding or lead to other serious medical problems. An estimated 300,000 Americans have AVMs, of whom 12% (approximately 36,000) will exhibit symptoms of greatly varying severity. Further, less than 200 people have an AVM as severe as the one he currently has. At birth, this AVM was very small, less than the size of a quarter, and was not an immediate health threat. In fact, doctors assumed it to be a birth mark and explained to his parents that it would eventually fade and go away. Ultimately, that is not the case. As he grew, so did the "birth mark" which was actually an AVM continuing to develop. Over the years, he was seen by a few physicians in an attempt to have the AVM treated. However, since it provided very little health risk at the point in time, the condition was deemed to be cosmetic in nature. Further complicating the matter was the fact that none of the doctors we were able to see had any experience with something so complex and severe.
His entire child hood was haunted by this condition "with no serious health risks". He was unable to play football. Once he was able to make his own decisions regarding clothes, he refused to wear shorts. In fact, he hasn't done so outside his own home for over 20 years. He found reasons not to go to pool parties, or to the lake with friends all through his teens, as he was embarrassed of his 'cosmetic' issue. He struggled internally with all the things he had to miss out on, but ultimately, he persevered. We was married in February of 2011 and welcomed our son in to the world in March of 2012. He worked his way from a Texas Roadhouse cook in high school to the second shift Compaction Senior Specialist at Mylan Pharmaceuticals, where he has spent the last 6 years. From the day he turned 16, he has held a job, constantly striving to better himself and in turn, managed to have a very comfortable living over the past 14 years.
On February 19th, 2013, he arrived at Mylan, and began his shift. Sometime about half way through his shift, he noticed a burning sensation in his left leg, about mid way up his outside calf. He also started noticing more pain from the core of his leg than normal. He finished his shift, and returned home, where he noticed 3 small red bumps where the burning was. It was not unusual to have odd pains in his leg, as he had constant pain for years and years. This was a different sensation, and while he was unsure of it, he showered and went to bed. The following morning, he woke up early, as he normally did, to a major change in the red bumps. They were now much larger, more like knots, and significantly more painful. The area around these bumps was an intense red. He showed me and I was immediately was concerned. I insisted that he go to the ER, and so, shortly thereafter we left for Mon General Hospital. He was seen in the ER by Dr. Mark Johnson. The bumps, as we were told, were superficial blood clots. These differ from deep vein clots as they don't pose an immediate danger or threat, but they were also a sign that something was changing. While Dr. Johnson had very minor knowledge of AVMs, he knew right away that he could not be treated locally, because of the severity and complex nature of his condition. He brought in some other doctors to see if anyone had seen anything like what he has, to no avail. He advised us to go to Cleveland Clinic and be seen. He called Cleveland for us, and made the arrangements. On Friday, February 22nd, at about 4am, myself and Michael headed for Cleveland, where we were seen by Dr. Timur Sarac, a renowned vascular surgeon, and his team.
Over the course of his life, he had seen many physicians searching for answers and help. When he was 13, he had an embolization procedure that failed. Many of the people we seen had no answers for us. However, at the Cleveland Clinic, Dr. Sarac provided maybe the most optimistic outlook for his condition we had ever seen. He was very confident that he could offer a procedure that would increase Michael's chances of saving his leg. This was outstanding news, as many of the previous doctors had basically said his condition would never be able to be treated fully, and that at some point, amputation was probably the end treatment. Dr. Sarac wanted to do a transcatheter chemoembolization (TACE) which is generally performed on patients suffering from liver cancer. He felt that this procedure would alleviate many of the symptoms, including the pain and swelling, and would provide him the best opportunity to achieve the results he desperately wanted. The doctor felt that he could be up and walking around within a week of the surgery. They scheduled the procedure for March 4th and sent him home. Over the weekend, his leg became extremely swollen, and developed two new bumps, which we assumed to be new blood clots. Monday morning, I called Cleveland Clinic and explained to Dr. Sarac's nurse his new symptoms, and she advised us to come to the ER immediately. Again, we loaded up, and began the four hour drive. We were seen in the ER at Cleveland Clinic, and he was admitted on February 25th. The following day, we seen many doctors, as they tried to get the procedure moved up. However, we were informed that my insurance, Blue Cross Blue Shield, had denied pre-authorization of the surgery, on the basis it is "experimental". The Cleveland Clinic staff assured us that this was normal, as a result of the health care reform, and that they would appeal the decision and get it taken care of. He spent 3 days in the hospital, and while he was there, his surgery was canceled for the 4th, and moved back one week to the 11th. However, the week prior to the surgery scheduled for the 11th, Cleveland Clinic again called and explained that the insurance had denied pre-authorization a second time, and that his only avenue of action was to now begin a lengthy appeals process. Even as his condition worsened, he started making phone calls to begin the process. Over the next couple months, he appealed the insurance company's decision, both personally, and through his employer, Mylan, and also through Cleveland Clinic. Dr. Sarac called Blue Cross Blue Shield as a peer-to-peer appeal and explained why he needed this surgery and asked them to please reconsider their stance. They asked Dr. Sarac to please not call back as their decision was final.
At this time, we had exhausted all of the appeals, and still had no resolution to his predicament. He was now on short-term disability, provided through his employer, for up to six months. He consulted with an attorney, who was able to look through his case pro bono. In the meantime, we called other doctor's offices. Basically, we reached out to anyone who would listen to see what other options are out there. It has been dead end after dead end. The insurance company has been uncooperative both towards Michael, and towards his employer's third party benefits manager, delaying his long term disability from being approved. His entire life was and is being held up because the insurance company deemed his treatment option, his only treatment option, "experimental". In a book of numbers, they find a condition and a list of codes for approved procedures. Unfortunately for us, his abnormality has no approved codes, no approved procedures. Any and all treatments are going to be "experimental". He is a victim of the bottom line.
While the effects of his condition when he was younger were demoralizing, and have led him to a lifetime of self-consciousness, the current effect on his life has been brutal. For the first six months of his disability, he received half of his pay basically. In today's economic climate, a savings account will only hold you over for so long while trying to maintain life on half of the pay you have grown accustomed to. For the better part of the last two months, he has received NO pay. Our family has been burdened with an extreme financial hardship. We've had to give up luxuries that were rewards of both myself and my wife's hard work and dedication to being productive citizens. We've had to make sacrifices to merely scrape by, while prior to this, we lived very comfortably. Now, we are being forced to make changes to every day necessities. Our debt is mounting. The medical bills are piling up. Our credit will soon be ruined. Our three boys have to suffer because of an unjust system. Aside the financial hardship, the strains on my family are at times unbearable, seemingly. He struggles with the fact that he can't provide for his family. He is unable to enjoy prior hobbies. He rarely leaves our home. Yet, there is no light at the end of the tunnel. No one has been able to help.
Many people in the medical field have suggested he files for SSI disability. All the while, he wants nothing more than to return to work, and be a productive member of society, while providing a good example and better life for our kids. Would it not make more sense to allow him the treatment he so desperately needs and allow him to return to the life he once knew rather than forcing him to become another sponge living off the system? The whole process is beyond my means of logical thinking.
We would love to find someone who would offer direction or assistance in our matter. We've found nothing but dead ends. We would like nothing more than to find help. As I said before, the medical expenses are adding up and we are not able to make ends meet. Our next step is going to John Hopkins on October 28, 2013 to see if they are able to save Michael's leg. Thanks for your support and help. God Bless!