holy crap I'm blogging more than one day in a row. In part this is because I'm doing a lot of waiting around right now. Waiting to try to get steroids (yes, I wait to try to wait), waiting for my colleague to make a tree, waiting to feel better from my summer cold so I can be active, waiting for summer to end because it's TOO FUCKING HOT HERE.
I went to a conference in Wales two weeks ago. Admittedly, I drank too much and slept too little. That combined with air travel conspired to give me sinusitis. I've been sick over a week, and there's still junk in my head. I've tried climbing in the gym, and I'm shaky and tired.
Feeling shitty right now sucks more than normal, because I'm going to be starting a stem cell transplant for MS, and it is 100% guaranteed that I will feel like dog shit from late October to January. I have so much to write about this... it's first and foremost on my mind right now.
The idea is that chemo is used to reset my immune system, since it has gone haywire. I'm lucky to have very few symptoms, but over the past few years MRIs twice a year have showing significant progression in the form of new and active lesions. This is not good news.
HSCT is not a new treatment, but given the vagaries of both medicine and transmission of information in general, it's just now getting very popular. I found out about this treatment from my neurologist at Sutter a year ago - he suggested checking the clinical trials website regularly, as he knew that a doctor in Chicago was going to be conducting a Phase III trial for HSCT. I contacted them, made it through the first few hurdles, went to Chicago, and was offered the treatment on a compassionate basis due to my MRI films, and the fact that I'm running out of drugs to try.
Plus - the drugs are total fucking bullshit anyway. Such garbage. I cannot believe that this is the state of things. Switch patients from drug to drug to drug with increasing risk and side effects. No wonder a treatment that cannot be patented and is not new is not covered.
So cue the fight with insurance. On the one hand, it's great that I'm not in the trial, because I won't be randomized out, meaning I will get the treatment. On the other hand, since I'm not in the trial, insurance is fighting covering the $125k cost.
Fortunately my parents are offering to cover it, but I'm still appealing. I've already appealed several times - the last appeal was with an external agency in California. Blue Cross denied me on the basis of the treatment still being considered "experimental". I took the language of their justification of denial and added publications they hadn't cited and a list of insurers who have been covering the treatment. Essentially I was trying to write a proposal disproving that HSCT is experimental. I feel like I made a good case, but who the hell knows what a bunch of bureaucrats are going to decide. I'm at the mercy of the system. A cog in the wheel.
The ultimate plan is to blog the transplant experience, and backdate what has happened over the past 4 years. Wish me luck - in so many ways. All 5 of you who might be reading.
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