Tuesday, September 2, 2008

The clusterf # # k that is Tysabri

I came home from work on Tuesday with lots more work to do at home and there was a message from the neuro's office telling me to call back.

So I did.

Thus begins the clusterf##k that is Tysabri. The TOUCH people have informed the neuro's office that I am now disenrolled from their facility and I will be seeing Dr. X at some other location for the infusion. Nowhere was I a party to this discussion or this decision.

The TOUCH people were supposed to be checking out other infusion locations to see their availability, how often and when they infuse time-wise in the day, and price. There were several other choices for them to check out besides my neuro's office and then they were supposed to report back to me what they found.

Instead the TOUCH people just took it upon themselves to change the potential infusion site which now pits me in the middle of neuro #4's office and the TOUCH people. Like I need one more phone battle right now, people!

Is it flipping crazy of me to want to know the price of this medication and the infusion costs and the availability of infusion times before I consent to treatment? Neuro #4's office says the cost is the same no matter where you go but that it also not true, as evidenced by Brain Cheese's recent dealings with Tysabri costs.

I have 11.5 sick days this year and 5 personal days. Is it truly selfish of me to look into another site that may have weekend or (gasp) late evening hours that will accomodate my schedule more easily? This is a once monthly infusion, two hours at the infusion place for medication and med watch, plus I have to travel an hour to and from the location.

My neuro's office only offers the infusion one day a month from 7:30 a.m. until 11:30 a.m. So, if for some reason I am not deemed infusion-worthy that day I have to wait a whole other month. That's not the dosing schedule people.

Not to mention that I KNOW the people in this office are not following the TOUCH protocol. I have read up on this and I'm not some idiot who fell off the pumpkin truck.

So today I came home from work, took a detour to savor a strawberry/black raspberry twist ice cream cone, and then started calling the local infusion sites to check on their hours and availability. Lo and behold, some of these places infuse five days a week. Some of them even infuse late into the evening. I can feel the Earth falling off its axis as I type this.

As an aside, my neurologist only works Monday through Thursday; not that I see him anymore as I am now on the NP's rotation. I'm not real thrilled with her care, or lack thereof, as I spent the entire summer basically suffering and being told to, "Call me back in another week," while she went off to yet another conference. Maybe one of those conferences should be titled "How to Recognize That Your Patient is the Most Important Person in the Room at Each Doctor Visit".

Then I had to ask the infusion sites about which physicians would work with them as I will be leaving my current neurologist as soon as I can get in with a new one that will work with one or more of these places. I don't like being bullied by the neurologist's office to do what they say and infuse there or else I can just get another doctor. Isn't what I need and want important in there somewhere?

Finding a good neurologist must be like climbing Mt. Everest: extremely difficult, depleting your oxygen, and battering you down with various wintry weather conditions.

I also put a call in to my Primary Care Doctor who works super hard for me and with me to get a referral to magic neuro #5. He deserves a big kudos here. Thanks, Dr. Jeff!

And I, my friends, am one of the lucky ones. I have decent insurance, my cognitive abilities are still mostly intact, and I know a lot about what's going on in the MS world. The sad thing is that for many people, most of the MS world revolves around this kind of frustration on top of any other medical issues it may be causing.



Oh Dear, breathe Webbs, breathe.

Weeble Girl said...

I'm breathing but this is so unbelievably frustrating to constantly have to advocate for your own health care.

Grrr, hoping today is a better day. It has to be, it is a day closer to Friday!


Anne said...

Geez, I hope you get this straightened out soon. Nothing like being on tenderhooks waiting.

Take care,