Another Of Life’s Little Battles

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.


4 Comments Add yours

  1. Twyla says:

    Wow …that was a hurdle !
    I had a body pet done three years ago . I had a lung biopsy done 7 years ago when I was first diagnosed . Didn’t have any prom lens getting it approved . I also just had an upper body one …they called it a heart PET. It was established in body in first PET that sarcoidosis was active in my heart . The second heart PET was to check status of heart after having stress cardiomyopathy or Tacosubo . I don’t know how hard it was to get it approved .. but it happened . My insurance company deals with a lot of sarcoidosis patients . I know at least 10 in my support group have this insurance . It started in my state … so maybe that’s the reason they didn’t deny it . I also know that a PET diagnosed two of my support friends and they where treated ( like me) and helped prevent a lot of damage to the heart and helped get a life saving ICD’s .
    I would have done the same thing that you did . I feel bad that a lot of people can’t afford to get one . Therefore they have to pay the price with their health …and the insurance company saves money … but in the end they lose too.
    Sorry to long … had to vent .

    Liked by 1 person

    1. Never too long 😉. This disease, although a lot better known now compared to 2006, is still not well known and so it is not taken as seriously I guess. I think a lot more effort needs to be put in to awareness not just for research, but for the medical community to understand how serious it is. I don’t think they understand that left unchecked, it becomes a terminal illness.


  2. Clint says:

    I have cardiac Sarcoidosis which can be traced to 2007 but undiagnosed until mid 2017. My caediologist prefers just the cardiac petscan and have had two, the one to diagnose and last July to show I was clear. I am off prednisone but still on Cellcept and all my cardiac meds. My EF is 15-20, but compensate. I am on a heart transplant list.


    1. The reason the cardiac specific PET scan wasn’t recommended was because I have both cardiac and pulmonary sarcoidosis. Good thing I didn’t just do the cardiac scan otherwise I wouldn’t have know about the pulmonary sarc being active.


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