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13 Feb 2016

I received a letter from my insurance company today. As expected, my follow-up treatment has been denied. My Dr. is still going to resubmit the request with a letter of appeal. He is hopeful they will at least cover; the time, room, nurse, and maybe medical equipment. My Insurance advocate wants me to have the appeal resubmitted so the insurance company is forced to re-conference and detail the denial.. I do not expect anything different as far as the outcome, but I am not a quitter so. . . . Here we go again!

 

15 Feb 2016

I had my first of 6 Follow-up Rituximab Infusions. Though this is just right in Baltimore, The insurance company is initially stating this is “Food from the poison tree.” therefore they don’t have and have denied payment for the infusion. My doctor and his coordinator disagrees with the insurance findings however and are submitting an appeal on my behalf. This is just the next step in an unfamiliar procedure. My medical team is somewhat familiar with it however so we will see.

My Hematologist has agreed to take people that may need the infusion but can not find a location. He gave me his card. He is still trying to work out the insurance part, but knows even without the insurance coverage the total will be about / around / approximately $1k to $1.5k. That is inclusive of the meds, room, nurse, IV and all that entails. I will be adding his info to the Mexico Facebook page.

To be honest, by the time I arrived back home from the infusion, I felt weaker than when I left. But I choose to believe it will be temporary. Rituximab is an autoimmune suppression drug. 100mg is a very low dosage, so I really didn’t expect it to affect my energy level. But I got home and slept for 3.5hrs. As always, I will keep you informed, good and bad.

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About the Author:

A little about myself: I was born Carl Levon Jones in Conway hospital in 1959 to Hazel Elizabeth Jones. I am the third of four children. My mother never married. This today would be normal but in the old days, it was different. Maybe it was the beginning of the change in view. I was raised by my grandparents from the age of 1 when we moved to Maryland. My mother was still a big part of my life, as she and a few sisters had moved to New York to try to make a living instead of the depressed south. I lived and grew up with my grandparents, brother and sister and cousins until I entered the military at 19 years of age. I spent 12 years in the Army learning to be an electronics technician, just to have computers take over the industry. I, therefore, had to relearn electronics with computers being the main focus. No, I am not talking Windows and Microsoft, but Fortran and different flavors of UNIX creating GUIs. I rose through the IT Field from the bottom, to be a Manager at different DOD Contractors. I was married to my wife, Patt in 1981. We have been together ever since, 38yrs. We had one son, Carl Levon Jones II the following year while still serving in the military. I am a man who believes strongly in family and relatives. I am as close to Patt’s family as I am to my own. Closer in some cases. Unfortunately, my rise in IT was interrupted when I contracted the Autoimmune Disease, Multiple Sclerosis in 2012, diagnosed in 2013. I had to leave work in late 2014. I have been dealing with the nerve damage(Neurological) the disease caused. I went to Clinica Ruiz in Puebla, Mexico for a procedure called Hematopoietic Stem Cell Transplantation (HSCT). It is not offered for my type of MS PPMS in the United States. A battle we have been fighting for some time now. This Blog is about my; MS Journey, my thoughts (Poetry) throughout the years, my experiences and my friends and family (Photo Gallery). Hopefully, this Blog will help at least one person in their decision to conquer the MS Beast, and help to get this procedure available in the United States and covered by the Insurance we pay so much for.
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