I called my Insurance-Nurse Case Manager with a question about the on-going process Dean has been working onin trying to set-up an in-house Pharmacy for managing and shipping Aldurazyme since our benefit year renews July 1st and so thus does the specialty Pharmacy contract. Dean is cont'ing to sort this out and is able to provide the drug through their own means in-house is just a matter of essentially how will they bill and reimburse themselves (I don't quite get it) but my CM said it basically comes down to if they (Dean) by and sell the drug themselves they have more control and while it will still be incredibly costly for them at least they would be keeping the cost in-house in a sense. (I was a little lost on this too!) - I did find out sadly that my CM (Peggy) is leaving to go to a different job, she had started at DHP a few months before my parent's employers switched from WEA Health Insur to DHP so we've really been on this past 3 yrs journey w Dean together. Her last day is in several weeks and she did say she'd we should exchange emails so hopefully we will do that from time to time, I think she just would like to keep up-to-date on what is going on medical wise with my life because she has been there through so much of it in the recent past. I am ok with that. =) We didn't always agree on every decision but she just about made mountains move and especially in the past year when our plan changed from a Point of Service (choice in providers) to an HMO (usually a small network of providers the insurer contracts with whom you can see) as she got exceptions in order for me to stay with many of the specialized specialists I see all of whom where outside of Dean's HMO network. She made the Medical Directors aware of my situation and diagnosis and why we needed the special exceptions to see the providers I do out of network and I never had a problem getting those approvals then or now. I am hoping that the CM she plans to ask to take over my care will care as much as Peggy did and will be invested in dealing with providers on my behalf when we need something I am unable to do on my own. She would call my specialists if necessary to get whatever paperwork complete or work with my PCP and I when necessary and just all around was very good at what she did; like I said we didn't always agree but she still cared!
I have been up to this point other than writing a little about the shunt surgery here otherwise trying to just put it out of mind (out of sight, out of mind?) but really feel far from enthused about this; which I know your thinking "well how can you be enthused about any surgery?", right? The thing is, you really can't but you can look at the positives at least ie what positive impact will it have and get by with that. This time I am really not digging any of it, (as I think i've written previously) having to put the TPL shunt back in to the peritoneal space by the VP shunt sucks (how's that for sounding childish!) actually and especially so when we finally figured out places that worked for both shunts to drain separately and with the 1 Codman-VP valve I've been doing better so I really think w 2 Codman valves (1 in each shunt vs 1 Codman and the 1 current Strata valve) I would do really well. Sometimes I curse the never ending crap with this disorder; why can't we just have one resolution and that be it for a while? I don't mean to sound resentful or whiny which I know I do it just is hard sometimes to understand. I am still hopeful atleast that maybe there is some, small chance Dr.Bragg would put the thoracic shunt back in to the pleural space sometime down the road after the open heart surgery is stabilized and healed/sorted out. I am also praying Friday's surgery will be a morning surgery as afternoon surgeries rank right up there as completely aweful (no food for so long of a period being the worst though admittedly sometimes I will chew on hard candy bc I feel incredibly crummy when I don't eat anything and then get very crabby/short tempered). Several of the D6-4 (neurosurgery) nurses are on fb and so I asked the night shift ones if they work Fri and only 1 of the 3 I really like (there are others I get along w well to) is not on vacation for the next week; go figure! I do hope both have good vacations though as although I wish they where working I also know they completely deserve the time away. I definitely wish we had been doing this surgery on a Tues or Weds vs a Friday though. =/ In fact I wish we didn't have to do it AT ALL!
I know I just updated yesterday so i'll stop whining and update after Wed's and Thurs's Hand appt (removing stitches, see if the splint can be taken off for good) and the Cardiology/Cardiothoracic Surgeon Appts (thurs).
Thanks for stopping by again,
Erica
Hi Erica,
ReplyDeleteYou have every right to whine and complain far more than you do. It stinks that they have to move the shunt again when you were finally getting some relief from it. Sending you hugs and prayers, my friend.
Robin Piefer