We have the med approved! I picked it up Weds, my normal Infusion (ERT) was a different day due to our having gone to Bay Beach on Mon. Given my Pharmacy, Skywalk is right next door I was able to stop
there before going to ERT.
I had talked to my Heart Rhythm Dr (email) yesterday morning, he had emailed to let me know iue planned to work on the Pharmacy benefit appeals yesterday. Late yesterday afternoon he emailed again and had talked to my secondary drug benefit provider (Cigna) who overturned their denial and gave us a approval for the Ivabradine (Corlanor)!
I talked to the Skywalk Prior Auth Coord. I often work with at the Pharmacy Tues afternoon after reading Dr.Kovach's email to let her know atleast my secondary insurer had overturned their appeal
and to see if approval would go through. She stated they had the med in-house, which they actually had just ordered it the day before "we knew with your persistence you'd get it covered", (each month like with my Butrans Patch b/c I am their only patient/customer on it they will order this Ivabradine when I give Collette the heads up and then they get it overnighted and I am able to pick up typically within 24hrs. I usually would call in the Butrans a few days/week before I was going to pick it up so will coord. that and this Ivabradine to be ordered around the same time and pick up the same time.
My Primary Dr at the pre-op Appt last wk had suggested waiting till after next wks surgery to start the med (have to do a 5 day "holiday" between stopping the Diltiazem, a Calcium Channel blocker and stopping the Ivabradine (Corlanor) anyways so it is fine.
Per Dr. Kovach's (EP/Heart Rhythm) dr. NP she agreed about waiting to start the med till after surgery next wk. Dr.Kovach had wanted the 1st med f/up to be 1 wk after starting Ivabradine for a EKG/Clinic f/up so that is set for late the following wk. (2 wks from tmrw) unless of course something changes w/starting the med, but his NP commented if needed to let them know and we'd adjust the f/up as needed if need be.
As it is I see my Cardiologist then a wk after this (1st wk of Sept) so as is now it all works well with starting this med. His NP did say should we have any issues with surgery just to let them know and they'd schedule the f/up around surgery/being out.
Most of my Specialists work pretty well together and communicate well when needed so if needed I am sure that will happen post med start. I am unsure if Dr.Bragg has talked to the team or is planning to rgarding Anesthesia but my Cardiology Team (both Kovach and Earing, Heart Rhythm and Cardiologist) are well aware of this upcoming shunt revision.
I am thinking just to make sure all 'T's are crossed and 'I's' dotted I may call Dr.Bragg' Secretary on Monday to make sure they have everything they need (minus INR which i'll do on Tues) like the official 'ok' from my Cardiologist, all the lab work and pre-op from my PCP (She is great about getting this stuff in) and/or anything else they may have needed just to be sure we don't get to Tues. and are trying to scramble... I always wonder if I am annoying by checking on this sort of thing but at the same time the alternate is getting to the last minute and their not having something they need... I am at FMLH and CHW both Mon. (ERT Infusion) and Tues (INR and Port access for Tues surgery) so if something where needed I can fairly easily get ahold of my Team that is in Milw. and get it..
Ivabradine (Corlanor)
As far as the new heart med goes, I may have written about this previously, I honestly can't remember but I think the biggest questions for my Cardiology Team is 1. B/c the med is so new, Dr.Kovach has used it in just 1 other pt. he said their biggest question was/is not knowing if the med will help/or will it help but could it make any of my other issues worse? (an unknown, "We don't know if there will be side effects for you that aren't seen in other people b/c of all your other issues". He had made the comment, which is our goal and has been our goal with all the other heart med classes I've been tried on (but failed to adequately lower heart rate), they hope to get heart rate down and this in turn "helps you to feel better".
One question I had asked b/c normally with increased/rapid heart rate pts. more typically have high blood pressures I guess. In my case more often then not I have very low blood pressures so I was curious if this med would cause even lower BP's? I do not have adverse
symptoms from the low blood pressures I have thankfully though it tends to make many of the Residents nervous often when in-pt.
Some of them will try to stop the heart meds which is ridiculous and especially given I have never experienced side effects from the low blood pressures but the meds are needed for heart issues. Anyways so Dr.K could not say if it would further decrease BP but asked that if I would experience adverse side effects to be sure and let him/his office know. This I am definitely not to worried about.
Overall as far as how long it takes to typically see a benefit the expected time is about a month and they typically give it 2months to judge whether the med is doing what it is hoped to do (bring down heart rate, in turn help heart failure symptoms) and hopefully slow mitral valve from worsening even further or perhaps quite as fast as it has been..
To directly quote Dr.Kovach (this one I wrote down verbatim, I love it!):
"This is very much us trying to pull something out of our pocket to see if it will work for you" - meaning my Cardiology Team is really trying to think a little outside the box to try and avoid a even more risky 3rd open heart surgery (OHS) for as long as we potentially can.
Ivabradine is approved overseas for Congestive Heart failure as well as to fast of heart rate (both overseas and here in the U.S) and there has been a small study on it's use in Mitral valve disease - all 3 my issues (Tachycardia, CHF, Mixed Mitral valve disease w/increased Pulmonary pressures). So in my case we are using it "off label" but technically the approved uses are issues we are dealing with, with my heart.
Stay tuned, will update again sometime soon. - On a small side note I have to add some of my family and I went to Bay Beach (Green Bay) Mon to the Amusement Park and was not only mostly beautiful outside but being a Monday most of the ride lines where pretty short. As always the day was great though goes to fast! Tues I was needless to say a little sore (but kind of worth it, my low back being the worst from 2 of the rides)! =) I started back to PT so good timing (he does hands on myofascial/lymphatic work). =)
Anyone who is on fb may have seen pics there. Next yr there will be a new train line layout (the new train was running when we where there just on the old, shorter tracks) as well as 3 new rides are being added this fall and next spring when the Park closes. It's a place absolutely perfect for kids and for adults!
Thanks for stopping by,
Erica
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