Per Dr.E's Nurse he did give the ok for Dr.Bragg to do "whatever she feels she needs to do" which I kind of suspected he would ok any revision if she still does opt to go ahead with changing valves.
I see Dr.Bragg on Thurs this next wk. I am watching Zan both Thurs and Fri at his house but my Sister was able to get his other baby sitter (whom Z also loves) to watch him for part of the day while I go to Madison.
I am hoping Dr.Bragg will take fluid off the shunt and we'll go ahead and put something on the books to switch this shunt valve.. I guess will see when I see her, I can be hopeful.. it truly seems as if mornings have just gotten more difficult. As if I wake up more and more at night (have even tried not taking the 2nd dose of cardiac meds and doesnt make a difference). If only all day could be like afternoon, I guess?
Ivabradine update
In a surprising turn, I had talked to my Pharmacist at Skywalk (Pharmacy, located in Children's Hospital) Thurs night out of curiousity if he knew anything about the new Heart failure med we've been considering.
He didnt nor did his wife who is apparently also a Pharmacist, cardiac one at that! But he offered to talk to his med supplier Fri (which he did) and run test claims through my Pharmacy providers (which he also did) to see if he could get access to the Ivabradine.
He did send a message Fri morning and is able to get access to the med through his supplier and as I figured my 2 Pharmacy providers require prior auths to be submitted prior to being able to fill the med. I knew this was likely the case w Dean per my Insur. Nurse Case Manager.
The drug is around $400/mo which to me doesnt seem that expensive given it's brand new, (I realize it's also not exactly inexpensive but.. considering Aldurazyme..) given daily and you figure the enzyme I receive by IV every week is $30,000/wk (huge hospital upcharge).. around $15,000/wk without the upcharge.
In any case Dr.Kovach emailed me with essentially the same information Jake gave me regarding access to it.
Per his contacts the drug has become much more available over the past 2mo vs the 1st time he reached out to the Pharma Co. it was still very restricted and not widely available due to the new release.
Given this information Dr.Kovach didnt think we would need the IRB (research board) approval at CHW and also didnt think we would need to admit as in-pt in order to start the med. I am unsure 100% on that part but won't complain if I can just start it on my own!
In an even better twist, today, Monday Dr.Kovach and my Pharmacist at Skywalk (in Children's Hospital) have been working together - all of us exchanging emails regarding this med and Jake (Pharmacist) had let us know he and his Prior Auth Coord. could start the process of trying to get the Ivabradine approved ahead of my appt next week with Dr.K. + he would just wait to order any med till after I saw Dr.K in clinic to be sure we decide to use it.
Dr.Kovach in turn opted to send a prescription to Jake/Skywalk so the process shall begin for working out the 2 required Prior Auths (Dean's, Navitus and Cigna for my secondary insurer).
We're hopeful we could perhaps have the PA's approved by next Thurs's appt and if so and if we do opt to start my Pharmacy will order it over night.
It seems very likely we would start/try the med as Dr.K said after the studies last wk, when he stopped by in recovery that he had talked to Dr.E, my Cardiologist (who was at an outreach clinic) and Dr.E said to Dr.K when they talked on the phone after the Cardiac Cath/EP Study that he really felt we should try it, see if it could help.
I just like this saying =)
On an unrelated note, I know they tried to use more sensitive type adhesives for the many and various patches (EKG leads x2 (I guess they had to use 2 separate sets if I remember right), the 2 rectangle patches they use if they have to shock a person, the Port cover patch, and heaven only knows what else) but wow-za do I still itch!
Thankfully it is intermittent but geesh between my back and stomach especially I at times feel a bit crazy!
Hopefully this all calms down and stops realllyyy quick! =)
Link on the new med we are planning to try, newly FDA approved in April/May:
http://www.corlanorhcp.com/mechanism-of-action.html
I thought I would clarify my form of Heart failure vs what one might think of as a traditional form of heart failure.
Heart failure can be a complication of circulation-improving treatments for congenital heart disease.
In these cases, the term “heart failure” is misleading because the heart actually may be working well; it is the related heart and lung problems that cause the symptoms.
In any case if there is anything new or interesting to update after this weeks appts (Pain Mngmt and Dr.Bragg, Weds and Thurs) i'll do so.
Otherwise I watch Zan some of Thurs and on Fri to as I mentioned above. I am sure he and I will find some adventures, likely at the Marsh if he has any say! =)
Thanks for stopping by,
Erica
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