One Mans Journey For Justice

Hello Family and Friends,
As many of you may know, I recently became very ill and have been on disability since October 11, 2016. Due to illness and various complications, I went from earning $5,800 a month from Boeing to $1,967 a month from Boeing’s disability company Aetna. What you likely don’t know, is the complexity of my story and my diagnosis.
         In November of 2016, after three biopsies, I was diagnosed with unicentric castleman’s disease. The only procedure approved by insurance for this disease is the extraction through surgery.  Mine was in my chest. The surgery would remove the damage lymph nodes. In my case, the damaged lymph nodes were located between my heart and my lungs. At the time, I was informed that the surgery was simple and advised that I could return to work within 7-10 days after surgery. As anyone would, given that information, I opted to have the surgery. Despite all of the advances in technology, along with the many biopsies and scans that were performed, the location of the disease, prevented the surgery from being successful and the majority of damaged lymph nodes could not be removed.  Because of the attempted surgery, I now have permanent nerve damage that makes it painful to walk, eat to fullness, or to sleep lying in a flat position. I must sleep sitting up in bed. I spent all of 2017 trying to convince Aetna and my doctors how bad my health was without success.  I switched to Medical University of South Carolina in January of 2018 and within minutes was diagnosed with Poems Syndrome, The answer to all my symptoms that I complained to them both about and they said I was making it up.
         I started Chemotherapy in March but after two months I was down to 175 pounds.  I felt I was dying.  On June 13, I jumped on a plane and I flew to the Mayo Clinic in Minnesota with one change of clothes, and the intention of flying back to South Carolina the next morning. The Mayo Clinic took one look at me and immediately let me know that I would need to stay for testing. What was supposed to be an overnight trip, turned into a weeklong stay. About two weeks after leaving Minnesota, the Mayo Clinic called to communicate the results of the tests performed. They diagnosed me with multicentric castleman’s disease, poems syndrome, and multiple myeloma. They used the same tissue from the biopsy material from Roper Hospital in November 2016.  Roper missed cancer and two other very rare diseases.  The Mayo Clinic informed me that without a stem cell transplant, I would deteriorate to death. If any of the three diseases had been diagnosed in 2016, I would’ve qualified for any and all treatment, including a stem cell transplant, without the need or suggestion for the operation that caused permanent nerve damage. At a time when I really needed to depend on the insurance coverage I had contributed to for many years, and despite an official letter from the Mayo Clinic confirming my diagnoses,  Aetna failed to believe that I was ill, and terminated my disability and only source of income on June 5th,2018. I was devastated and very ill, so I appealed the termination. After conducting a full investigation, on August 24th, 2018, they informed me that the termination would be upheld. In addition to terminating my disability, they contacted my employer (Boeing) and informed them that I wasn’t ill, which resulted in termination of my employment.
         On September 12th, 2018, I moved to Rochester, Minnesota to start my stem cell transplant. Despite the many obstacles, I am determined to move forward and fight for my life and my health. I am not sure what will happen since I will lose my insurance due to my employment termination, however, my main focus is to acquire legal representation to combat all the medical mistakes made in my case. Your prayers and any financial support will be greatly appreciated during my time of treatment and recovery! All proceeds will go to my legal funds, Thank you!

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Jordan Robinson
North Charleston, SC

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