Tuesday, May 9, 2017

Insurance change, calls, planning, uncertainty / Switch 1 for another (shunts, irritation)

Should be just a short update but no-less kind of a update I'd hoped I'd not be doing this yr! I knew from my Dad that the school district, where he works was again considering switching who they go through for their insurance and this time through Unity. Non-the-less I hoped Dean, our current insurer might come back with a better or comparable offer.

No-less this morning I got a message from Dad that come July 1, insurance is changing to Unity, which (depending what kind of policy it is, but guessing an HMO, we don't know yet) which likely means all the time I/my Dean Case Manager and my Genzyme (Aldurazyme, Biotech Company) Case Manager have spent setting up and coordinating the new infusion site at the Dean-Fish Hatchery site may be short lived.
Marge, my CM at Dean is looking in to this, if say I drop Unity and just keep Medicare as my primary would Dean, the new site still do the new infusion? Amy (Genzyme Case Manager) and I have made numerous Conference calls to look in to if I keep Medicare as my primary will that affect my being able to get Aldurazyme when in-pt? And will this affect cardiac care if there where any more in-pt procedures/surgeries (hopefully isn't but still info I feel like I need to know)?
                 My Infusion Nurses (most but not all of them)  / Funny comment from DHP Case  
                                                          Manager   -will miss her!
Has been a flurry of calls, Conference calls and emails between Amy, Marge, myself and numerous other people at numerous other places trying to verify and double check and triple check various info! In addition separate but related the Infusion Clinic Manager called me today to give me a little info and try to see about switching an infusion I'd asked about in 2 wks and she was seeing if the Nurse that is assigned primarily to my infusions might be able to switch what days she is off (that astounds me but amazes me in a good way they'd even consider that all so the Nurse would be there the day I infuse!
I was really skeptical about this new infusion site at first but between everything my Primary dr. has done, my Dean Case Manager has done and my Genzyme Case Manager, the Dean Med Director, Pharmacist and the myriad of other (fill in the blank) Directors I've talked to have done I actually feel pretty comfortable it will go ok. I'm going to miss my Nurses at FMLH but seems like the new site is really trying!
I am equally impressed my PCP wants to be involved and has asked that I have the Nurses let her know my 1st day so she can stop by.

I had my last infusion today at FMLH (start at Dean next wk) and some of the Nurses and I where lol'ing at the fact it's quite possible i'll be back there in a few months time anyways depending what the Dean-FH clinic says about my insur. change.
Otherwise the only other bigger thing and oh is it an issue, HOLY SMOKES, today at infusion I must have asked the Nurses for atleast 1/2  a dozen of the throw away ice packs. Low-to-mid back radiating pain (hoolyyy shiiittteeeee!!!!) that's far worse when I'm on my feet but certainly there a good percent of the time when I am sitting to. Improves when I sit certain ways and worse when I stand or sit certain ways. Ironically as this got far, far worse the headaches have gotten a bit better. AGGHH!!!
I see Peds Neurosurgeon anyways Thurs so am praying he will accttuuualllyyyyy listen.. And maybe do something besides just Xrays? Argh.I.Just.Want.To.Be.Able.To.Function.Better.!

No-less will try to update sometime soon. Have started the new Heart med (Verapamil), am hoping it will help. I really do not look fwd to calling Cardiology back with the update they'd requested and stating no effect if it does not. I. Do. Not. Want. To. Be. A. Pain. In. The. Arsh. But. I. Feel. Like. One!

                          Sunday School - Love these kids, love teaching them!                                               

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