I started this post awhile ago and never finished it, thought I would since it's something many spoonies go through and is an issue that has greatly impacted my life and either helped or hindered my care throughout the years.
I had my follow up with my new pulmonologist two or three weeks ago. My pulmonary function tests (PFTs) show that my respiratory system has weakened. We're assuming its from a progressive neuromuscular disease that my specialists have long believed is a mitochondrial disease based on many multi-system symptoms. My blood gas gives more evidence in that direction, as I'm having metabolic acidosis.
I need a firm diagnosis to get a nocturnal noninvasive ventilator (NIV) so that my lungs can receive help at night, and I can breathe easier during the day. My geneticist believes that to find MY diagnosis I need a muscle biopsy done, where they don't freeze the sample and blast it with energy to see how my mitochondria function, along with many other specialized testing that only one or so other labs/hospitals in the country do. However my insurances have put me in a catch 22 as they either don't cover the billing codes for the specific muscle biopsy testing I need, or say its not medically necessary. Again, without the diagnosis they won't approve the NIV/BiPAP, something my pulmonologist feels would improve my quality of life and support my weak lungs and diaphragm. He stated that if I had a concrete diagnosis of mito (right now we're treating me on a clinical basis, with improvement), he could put in for a NIV without any more issues or testing, solely based on my PFTs. Thankfully, I'm not in respiratory failure (though that would also get me a bipap, but is obviously not a diagnosis I would ever want!) and can go without the nighttime vent for right now, and if I get worse we'll repeat the blood gas, see where we are, possibly prove I need it.
But it is frustrating that I have to get worse before I can get what I need, as this is not the first time I have been in this position. Insurers have a lot of authority to make really massive decisions, when they have not even laid eyes on me, spoken with me, or won't speak with my physicians because it isn't policy. The doctor's who know me best, every detail about my care and conditions.
Thankfully, I know Who is in control and it isn't me or the insurance companies!
Colossians 3:15 And let the peace of God rule in your hearts, to which you were called in one body; and be thankful.
We are praying that a test called the nuclear mitome test through transgenomic will be covered (I just spoke with a very kind woman today from billing) and perhaps even find a diagnosis. Nuclear Mitome Test explained
So while I don't understand, I'm just going to wait and see, and know God is in control. I can't change anything about the world by worrying! But that doesn't mean that I'm not allowed to feel frustrated about it at times! And that's okay.
Luke 12:25 Who of you by worrying can add a single hour to his life?
-Milly
