In my last post I left off that….I had just received the letter from my insurance stating they had denied my appeal for the third time. At the same time I got a letter stating that they had to send it out to a third party company that Medicare contracts to for a final decision on the matter.
I was sure it would be denied once again. I had researched this company and they had an 85% rate of siding with the insurance companies. It really did not look good. Not even a week passed (two days before Thanksgiving) and I got a phone call from a lady and it took a couple of minutes before it actually registered in my brain what she was telling me. She felt it was critical I know right away that they had decided in my favor to send me to Stanford.
Like I said it took me a few minutes before it registered in my brain. This was a HUGE win for me. This is what I have been fighting for the past 7 years.
Now begins the process of getting my records there. The past several weeks I have been working with people at Stanford to figure out who will be the best person to see.
I have filled out paperwork to have all my records from all of the facilities I have been seen at, sent to Stanford. This process alone will take my insurance a couple of weeks. I have been seen at both Northern California facilities and Southern California facilities. I was seen at a total of 6 different facilities total. At least they put everything on disk now. If they did paper records still it would be upwards of 4,000 pages or more not including images & films.
I will be following up this next week to see if they have started to get records and to see when I might be able to schedule my first appointment. As of right now I think my insurance thinks they can get away with just once consultation, but I know Stanford is going to want their own labs and maybe even their own scans. I may have to go back and fight my insurance to give me more visits and such. Not sure how that works, but seeing I have come this far I should be able to do this.
I think our biggest hurdles now will be the logistics in getting to and from Stanford. Then add care for our daughter while we make the trips. The drive there and back is 3 hours each way (with no traffic) and with my oldest daughter leaving for college in 2 weeks we are going to need to get a sitter. This is just going to take some serious planning and we are going to have to add extra expenses into our already stretched budget.
Even with the extra expenses, which will be very rough on us as well as the logistics of it all. This is a huge deal for me. I will finally get the care and treatments that I have been otherwise denied up until now. I will finally get to see doctors who know about Neuroendocrine/Carcinoid Cancer (NETs Cancer). This will not mean a cure for me, as there still is not one at this time. However what it does mean is I will have a higher quality of life and possibly a few more years with my family. That means more than anything right now.
Now I can enjoy Christmas with my family, then send my lovely daughter off to BYU Idaho to school. Thank you for sharing the ups and downs. Hope your family has a wonderful holiday & Merry Christmas…