Ready for a rant?
The most frustrating part of dealing with a rare disease...insurance companies.
Don't get me wrong, I am SO thankful to have insurance. Things would be much different if I didn't. But seriously, it does NOT need to be this hard.
We got a letter yesterday from my insurance company saying they will not be covering my recent hospital admission because they deemed it not medically necessary. They decided that because the diagnosis code that was used was "vomiting without nausea" and in their mind, that can be dealt with as an outpatient.
Fine. Except that WASN'T why I was admitted...
I was in the hospital for almost an entire week. During that time, I did not throw up a single time. No vomiting... However, I WAS on nausea medication the whole time because...you guessed it, I was nauseas!
I had gone to the ER the day before I was admitted on orders from my doctor and went back the day I was admitted because, again, he told me to go. The ER doctors felt that things were unstable enough that I needed to be admitted. So now apparently I'm supposed to go against the recommendations of my doctor who knows me and my symptoms and the ER doctors.
My potassium was so low I ended up needing almost 3 days of IV potassium because I cannot take it orally and it can't be put down my tube. It was also low enough that they were worried about heart issues and had me on a heart monitor the whole time I was admitted. That certainly sounds like nothing important that could be dealt with outpatient...
The doctor I was admitted under spent all of 20 minutes with me the entire week I was there and spent most of his time telling me that he was just not familiar with my mast cell disease and didn't really know what he should be doing to treat it. He contacted my allergist (not GI) to get treatment recommendations and followed what he said. They even wanted to transfer me to a different hospital since there was no ALLERGIST on staff where I was to consult with.
Because I was having such a severe mast cell reaction, I had bad abdominal swelling. So yes, I did have some vomiting, just not while I was admitted. But the real issue with the swelling was that meant I couldn't run my tube feeds because it was too painful. So for a week, I had ZERO nutrition. They had to keep me on IV fluids and IV dextrose 24/7 to keep my hydrated and stabilize my blood sugar since I couldn't eat. Apparently being able to take in nutrition is not medical necessary for survival...
We were going to leave earlier than we did, but since we were treating my mast cell reaction (not a GI issue) I needed to be on IV steroids to help reduce some of the inflammation. I cannot take oral steroids and since they cannot be stopped suddenly but need to be tapered, the doctor said I had to stay longer so I could do the taper in the hospital. Again, not like I had a choice at this point but to stay under the orders of the admitting doctor.
Seriously?!?! What part of that hospital admission was NOT medically necessary?? It's like they think I enjoy spending a week in the hospital and having to basically tell the doctors and nurses what to do since they have no idea how to treat me. Or maybe they just enjoy talking to me on the phone and since we finally got all my other insurance issues (from September...) straightened out, they needed to find another reason for me to spend hours of my time on the phone with them trying to fix this mess.
I don't typically cry easily. When I opened this letter last night, I started crying. I know life isn't fair and I don't expect it to be, but sometimes I just want to shout "IT'S JUST NOT FAIR!" and throw things at the wall (or the insurance company). It's not enough that I have to deal with living with mast cell disease on a daily basis. I also have to deal with all this mess that the doctors and insurance companies and hospitals who have no idea what I go through create.
Not medically necessary...I wish the people who made that decision could spend just one day in my shoes and then say that admission was not medically necessary. These insurance companies are making life-impacting decisions from the comfort of their offices and may have never even set foot in a hospital or seen what patients dealing with chronic issues deal with on a regular basis. They make decisions that can have serious implications for our health, yet they do it from a distance and never get close enough to see the effects their decisions have on our lives.
We already pay for my tube feeding formula completely out of pocket because it is not considered a covered expense under my policy. They covered the surgery to place my tube and cover all equipment needed to run my feeds, but won't pay for the actual nutrition...What part of that makes sense?? Probably the same part that decided the hospital stay was not medically necessary either...We're in the process of trying to get authorization for an immunotherapy injection that has shown good results in the mast cell community. The problem is since mast cell diseases are so new, there are no approved treatments, so our first attempt at getting this approved was denied. Here's a thought, maybe if they approve this treatment, it would work and keep me from ending up in the hospital and this whole mess could have been avoided...just a thought...
Okay, rant over.