Yesterday I was told that insurance denied the medicine and wanted a biopsy before the appeal because they want to make sure that the neuropathy is from Amyloidosis and not from me being diabetic. So I emailed Dr. Judge and asked him his thoughts, and added maybe its not Amyloidosis with a question mark. No other thought to that question, and got ready for study. Bible study starts at 6:30 via zoom, and at 6:54 I get a call from Janna from the trial in Indiana. Of course they all tell me to take it, it’s unusual for her to call so late. She starts off telling me that I can’t qualify for the trial because I am diabetic and since it’s a trial they need to know the results are from Amyloidosis treatment and if I am not feeling better that its not that the medicine is working but I am fighting diabetes. Thankful for the zoom mute because I just cried, and then she tells me that while its will be hard to prove the Amyloidosis in the nerves, because it’s never in the whole nerve and they can cut and cut looking for it, it is 100% in my heart. At that moment my heart sank.
My prayer has been that God reveal things in my heart I need to work on, and I had no idea that in the depths of my heart I had thought this was a test of faith, that the diagnosis was wrong, and once my faith strengthed it would be revealed I was good, a misdiagnosis. During this time I get an email from Dr. Judge, saying the same thing, that if we can not get this medicine approved we can go the heart angle because Amyloidosis is in my heart. 2 doctors, same night, states apart, are telling me without a question Amyloidosis has settled in my heart. My dad flashed before my eyes, the dr telling me it was in his heart and too far gone, and I lost it. But God knew, because He had this call happen, in the middle of the study, away from my boys, and after I hung up, I went back to zoom tears in my eyes and we studied Revelation and God’s word. Satan wasn’t allowed to enter my thoughts, we praised God, and dug deep, and at the end I was able to tell the ladies what the 45 minute call was about.
Tegsedi (a weekly injection) is called a silencer, (thats the drug they are trying to get me on). Right now the gene is flowing through my body like a faucet adn the silencer drugs turn it into a trickle. It would include weekly blood test, and bi-weekly urine tests for the rest of my life. It also cost 1/2 million dollars. There is a new drug called ION (monthly injection) is the trial drug and is hoping to be out in 2 years, and saying better. There is still the weekly and biweekly checks.
In talking to Janna last night, she said if I go on the Tegsedi now the chances of the insurance company letting me change when a better drug comes out is slim to none.
Tafamidis is a Amyloidosis drug that is called a stabilizer. Dr Judge was talking if insurance keeps denying we could go this route. Its not as good, but with me being in stage 1 it would be acceptable. It would require 6 months checks to watch the progression of the disease and as it progresses medicine would need to be changed.
There is a trial for cardiac Amyloidosis that they are 99.9% sure I qualify for it have a placebo but I could be on the tafamidis and do the trial.
We are planning on going to Indiana in September to see about the cardiac trial, while we are still pursuing Tegsedi, and God will lead us on the way to go as He has been this far.
That’s a lot of work, but God wasn’t done, showing me what I need to work on. The trip to Indiana would now be on us since I am not in the trial yet. A friend called me and wanted to drop something off, they come and hand me an envelope with money that I thought was way too much. They said that God had laid this on their heart weeks ago and if I wouldnt take it I was not letting them be obedient to God. I came in called my sister and was telling her this is too much I cant take it, fully expecting her to figure out a way for me to get this back to my friend. Instead she smacks me with I am being prideful! What! Pride is boosting about me, but no….Biblical pride is defined by preferring self will to God’s will. Really?!?!?! She goes to explain if thats what God told them to do who am I to say no. Humble…..God is making me humble and fully relay on Him and not me to figure it out.
I say all this in this long and winded post, because when I thought God was silent, He was working, working on me and behind the scenes. How could I fully move forward with Him, if deep down I thought this was some test, if I wanted His will until I thought it was too much. My friends God wants all of you, not some. Freely and fully surrender to Him, I am truly being refined in this process…….