Tuesday, April 18, 2017

Insurance; Infusion site, Conf. Call (Insur Co heads, Team). new Neurosurg. Appt.

Earlier today, after what felt like a mad dash to get my infusion going (my Nurse was amazing!) and things settled I had a Conf. call with the Dean Insurance Med Team as well as my Case Manager from Genzyme called so we could talk ahead of the conf. call.
Altogether there where  6 people from the Insurance Company as well as my Case Manager from the Biotech Company (Genzyme) that markets the Enzyme infusion drug I receive every wk. If I remember right it was the overall Insurance Company Medical Director, the Infusions Medical Director, the Pharmacy Director (all for Dean Insur.), my Insur. Case Manager (for Dean), my Case Manager for Genzyme as I mentioned above and admittedly I am forgetting who the 6th person was from Dean. Impressive though that all these people took the time to call in and talk to us!

Non-the-less as Amy, my CM said to me when we hung up from the call and she had called me back (on her day off no less, I am blessed to have her on my Team!) she has been on a lot of these types of calls with other of her Genzyme Rare Disease Pts and never before has she been on a call where so many from the Insurer took the time to familiarize themselves with the case  or the history. For that I was and am very grateful. All seemed to chime in, answer my questions and bring up very good points or things they are working to have in place. Although it's very likely it will be denied at the very end of the Conf. call (about a 1/2 hr in length) my Dean (Insurer) Case Manager (CM) mentioned I can request a new Prior Auth (PA) be done (I have) to request re-approval at FMLH to continue infusing there. This likely will be denied given Dean's push to bring Pts in-network, to their sites but then she also mentioned we can write up and submit a "appeal" to any denial if we wish.

Ultimately although yes I do wish my infusion where staying at FMLH as they have experience and have been able to manage my (especially) cardiac-fluid issues without needing to stop or miss any infusions I can understand why it is a huge benefit even to us Insur. plan holders to go in-network for the infusion as the cost savings to Dean each wk is very significant (roughly $42,000 now a week at FMLH where it was roughly $13,000/wk when Dean paid for the drug before it shipped/I infused). I'll also still be able to get it out of network when in-pt say if at UW or CHW.

I guess if I'm going to find any light in this (believe me I'm really not, I really don't want to change sites, the drive to FMLH is MUCH easier than is the drive to the Fish Hatchery site every wk) but my PCP works at the FH site so if there where any issues other than the 3mo span she'll be off (maternity leave) starting around July she'd be able to (her words) come over/help manage any issues.
On a different note (sorry this is ending up a lot longer than I thought) Peds Neurosurgery called Monday and a new Appt is set for a few wks from now w/Dr.Iskandar. I am not entirely sure what she meant but seems he's reconsidering/maybe has something else in mind (maybe she meant he wanted to re-test the shunts again? I'm not to sure, I was driving when the Secretary (Anna) called though I did pull over). Anyways so any prayers appreciate that goes well.
I think I may have wrote about it in the last post but he emailed me he was reconsidering the ICP Monitoring which I agreed with. Thinking about it since then I think even if we did do this him and I have to have an agreement what #'s range he would be looking for to in-fact show 1 of the shunts isn't working (which the shunt taps seemed to show). I and Dr.Bragg know well what (very small, very low) range I feel best at but I'm still uncertain if Dr.Iskandar completely gets this.


Will update sometime soon.
Hope everyone had an Happy Easter! He is Risen, He is Risen indeed!



Thursday, April 13, 2017

Is it really have to be this hard? Shunt frustrations

Why does life as  a Rare Disease Pt have to be so difficult? Why do some Specialists who are good at their fields have to be so dense to the not straight fwd/not as simple' aspects of rare disease issues?

I feel so frustrated, actually distressed in a way this past 2 wks. I do not normally experience anxiety much and I have to say I feel distressed. Frustrated that the answer is so evident, the NP got it, Dr.Bragg I think (?) believes its shunt issue (she originally stated she felt a revision was needed not sure now after she's seemed to talked to my Nrsgn. Regardless the shunt taps where very abnormal. My Primary dr. wondered how it isn't clear (that its my "normal" pattern with shunt issues) but this Neurosurgeon seems to have no clue?
Why can't he understand that in my MPS we often have difficult Hydrocephalus that isn't very straight fwd. Yet why also can't there be/or isn't there more drs in the MPS Community who treat this sort of issue-why isn't there more Neurosurgeons aware? Is Discouraging waking up every day feeling like this and little hope. =/

Between this shunt issues, the pressure being so typical to me when shunts not working right (pressure worst at night, early morning, slowly improves as the day goes on till finally about dinner time I feel better albeit imperfect). And then the Insur.-Infusion stuff. It's so tempting to me to just drop my primary insur. and use Medicare as primary thus I wouldn't be as stuck re where I could infuse at and I could stay at FMLH. The local community hospital has no business doing this infusion and the drive to my Primary (whom I really like) is more difficult than is my drive to FMLH/Milw.
 Neurosurgery wise unfortunately there is no good option, the Peds Neurosurgeon that works with mine now (replaced Dr.Bragg) feels the same as my Nrsgn does, that there's nothing he can do to help. Dr.Bragg of course isn't local and for that matter apparently can't treat Adults at her new hospital so seeing her in AZ isn't even an option. That makes me sad (wouldn't be ideal even if could but atleast I'd have an option).

I JUST FEEL DISCOURAGED AND ANGRY AND UPSET. Why does it have to be so difficult?
Sorry to basically just vent,

                     Reminder to myself. There has to be someone who can help, who will help, right? =/ I pray God leads me to whoever this is. =(

Friday, April 7, 2017

Neurosurgery (Shunt taps, clear but not clear result), ERT (Infusion) Changes

     This wk has just been a huge barrel of fun (or b.s, maybe a huge barrel of b.s?)

Peds Neurosurgery / Shunt:
This Appt was no less frustrating then any of the past ones with this Nrsgn have been. On one hand he says himself he has no experience with my MPS and thus the different way it presents Hydrocephalus in my case but then he treats it just like he'd treat any other complex Hydrocephalus Pt. SOOO FRUSTRATING!!!!
The shunt taps done on both shunts at Thurs's Appt showed the VPL Shunt they where only able to get around 2cc's I believe the NP said and she wasn't able to pull anything off the LP Shunt other than there was flashback in the needle (nothing able to be taken off).
I ran this by Dr.Bragg and she raised the concern a shunt revision likely needs to be done. But yes lets confuse the picture even more by repeating ICP Monitoring which won't be clear (b/c my pressure issues even in complete shunt failure aren't normal "high pressures" but is to much for me. And with atleast partial shunt function I completely don't get what the aim of this testing is... If he doesn't fix something after I do not know what I am going to do. I really keep questioning if I should try to get a 2nd opinion from his Partner (the guy that replaced Dr.Bragg at UW-AFCH basically).
This testing is set for a few wks., from now and between this and the infusion stuff I'm not sure which issue is frustrating me more!

ERT Infusion:
I don't even know what to say!?!?! This wk has been so freaking frustrating/stressful/irritating! Not only is my primary insurer trying to switch the infusion I get every wk to a site that has ZERO experience with my MPS I and enzyme infusions in general but these are the same sites that not 3 yrs ago said they could not do it because they didn't have the capacity (experience I guess)?!?!
I am fighting this all the way, I've been working with my Genzyme Case Manager and talking to my Case Manager at my insurer who unfortunately is in the middle as she then acts as my and my Teams voice what our concerns are.
Multiple Providers have told me they do not feel this site, which has no experience should be doing the infusion and my Cardiologist raised the concern they will not have a Geneticist on site. FMLH also has been able to adjust my infusion rates and volume around the cardiac issues b/c they have experience with enzyme replacement infusions in general.
1 of my Providers (whom I love) commented along the line 'they'll only do the infusion if they feel comfortable' which does not make me feel comfortable b/c I do NOT want there to be issues when we have not had any with infusion in years!

Will update sometime soon. Sorry it's been awhile in-between updates lately. I do tend to write a lot less often when I am not feeling great which I am not.