What a roller coaster ride the past couple of months have been with my journey with sarcoidosis. Last year, after twelve years of constantly being on prednisone, I was finally weaning off the drug slowly. In November I had my usual echocardiogram which came back having my heart function ejection fraction at 35%.
To say I was shocked is an understatement. I felt fine. There wasn’t any unusual heart activity like a-fibs or the such. My energy level was normal so I was baffled. Other than tendon and muscle pain I thought I was doing great. My cardiologist and I decided we should do a PET scan to see if there was any sarcoidosis active in my heart.
If you didn’t know this before, I letting you in on a little secret about the insurance world. The insurance companies have doctors, yes real doctors, working for them to actually find reasons to deny claims and pre-authorizations. It’s a for profit business people. Anyhow, my doctor put in a preauthorization for a PET Scan. It was denied. The denial letter I received said that PET Scans can not be used for sarcoidosis diagnosis and instead I would need to have an open lung biopsy.
I was flabbergasted! They denied a simple, non invasive, “inexpensive” ($7,000.00) procedure, in favor of a grossly invasive, painful operation that when I had it in 2006 required two nights in the hospital and weeks of pain. In 2014 the average cost of a lung biopsy was about $20,000.00.
My doctor appealed and they instead approved another type of PET scam that just concentrated on the heart, but before I could do the reduced PET, I needed to do a nuclear stress test. I did it and it turned out that test gave a result of 60% ejection fraction, which is pretty damned good for someone with heart failure. So my doctor took the median and decided to go with my ejection fraction was 47%. Eh?
Then I started to get dry coughs and chest pain, so a day before I did the cardiac PET scan I received a call from the imaging department that the scan the insurance approved was worthless. I needed a full torso scan, skull to pelvis, not just of the heart. So back we went to the insurance, and back they came with either do the cardiac scan or get a biopsy, but no full torso scan.
At this stage I was starting to worry that maybe the sarcoidosis was becoming active again because I was starting to feel symptoms I hadn’t felt in years. Breathing was tight, bronchial pain and burning, fatigue and I was losing weight too fast. I was now down to 1mg of prednisone. I was never so low since I started taking the drug in 2006, and now I was almost free of it. But I was having symptoms of either prednisone withdrawal or the beginning of a sarcoidosis flare up.
I decided to just pay for the full torso PET scan myself and do it as soon as possible rather than keep trying to fight insurance to pay for it. I did the PET scan, and the good news is that there is no sarcoidosis in my heart. My lungs do how ever have a small amount of activity as well as some lymph nodes in my chest.
I caught it in time, but the draw back is, you guessed it, I am back on prednisone. I have been back on for about two weeks now in addition to an inhaler and I feel much better. I could look at this as a major step backwards, but if you read my blog, you know I don’t roll that way. I see this whole episode as being extremely blessed. I caught it again before it cause damage and I am blessed to be in a place where I could pay for the scan myself rather than wait and fight with insurance. What is there to be upset about. Another hurdle crossed and onward I go.