I should leave the hospital with a chest tube in?

So much has happened to me since I wrote my last post. Back then, I believed that health insurance was the most important issue in America today, but I had no way of knowing that in the coming months, I would experience the nightmare firsthand.

I have an auto-immune disease called Wegener's Granulomatosis. For some reason, my immune system started to attack my vascular system. It attacked my sinuses, lungs, and most severely, my kidneys. It all started about two months ago, when I got a bloody nose that just wouldn't go away. I saw the nurse at my school right away, and she thought I had polyps, so she prescribed Nasonex and told me to come back next week. By then, my asthma started to flair up, and I had arthritic pain in my joints. The nurse believed it was all just from allergies, and she told me to start taking Claratin. The next week, everything just kept getting worse. The nurse gave me antibiotics, assuming it must be some kind of sinus infection. By the following week, I developed a severe swore throat, and my joint pain was so bad that I could hardly get out of bed. The nurse gave me a stronger antibiotic, and finally agreed to let me see the doctor. (My school doesn't have a full time doctor on staff, but they do have a doctor that comes in for a couple of hours every week. In order to see him, though, the nurse had to arrange it) The following week, I finally got to see the doctor, and he ordered a CT scan of my sinuses and referred me to an ear, nose, and throat doctor. It was another week before I was able to see him, and upon reviewing my CT scan, he determined that I never had polyps at all. Just as a precaution, he ordered a couple of blood tests. It took nearly a full week of calling his office to get the results, and finally, on Friday afternoon, the ENT doctor reviewed my labs and found that my kidneys were failing. He told me that I was okay for the time being, but that I needed to make an appointment immediately with my primary care doctor. The earliest that I could see him was the following Tuesday, since he is only on campus one day every week. He ordered about a dozen labs. Finally, Wednesday morning, he called me twice. My kidney function was dropping rapidly, and I had to check myself into the hospital immediately. Luckily for me, he had seen another case of Wegener's about 6 months earlier in another student at my school, and he knew what to look for.

Pretty much right away when I got into the hospital they started me on a heavy dose of Prednisone (a steroid to reduce the inflammation in my body). The primary treatment of my disease is chemotherapy, with a drug called cyclophosphomide. Because it is so toxic, they needed to confirm the Wegener's diagnosis with a biopsy. First they tried a biopsy of the legion in my nose because it is minimally invasive. It was consistent with my disease, but not conclusive. My kidney function was down below 15%. If it went down to 10%, I would have needed dialysis, and possibly a kidney transplant. Therefore, they decided to start me on the cyclophosphomide without a confirmed diagnosis.

They still wanted to do a biopsy, so the remaining options were either lungs or kidneys. The kidney biopsy had a very low likelihood of proving anything, since they just extract the tissue sample with a large needle, so they decided on the lung biopsy. The first plan was a video assisted procedure with a small incision and a probe. They had a pathologist standing by to check the tissue sample, and if it was inconclusive, they would have to do a full thoracotamy, a much more invasive procedure where they make a large incision and open my lung. The tissue from the video-assisted procedure was inconclusive, but my lung was too fragile for the thoracotamy, so they were again unable to confirm the diagnosis.

I spent the night in the ICU, and the next day they moved me back to a regular hospital room. My condition at that point is significant, because that is the day that my insurance company, Aetna, decided that being in the hospital was no longer medically necessary. I had less than 20% kidney function and a large legion in my lung. As a result of the surgery, I had a tube in my chest so that my lung could drain. I couldn't even get out of bed to go to the bathroom. From being on the steroids and because of my low kidney function, I started retaining massive amounts of fluids, and my weight shot up from 180 to 220 pounds in less than one week. And yet somehow, according to Aetna, I didn't need to be in the hospital anymore?

It was a full four days after the surgery before the drainage from my lung came down to a level that they felt comfortable removing the chest tube. That was Friday afternoon. They kept me for one more night, and after a total of 10 days in the hospital, I went home on Saturday morning.

My insurance problems didn't end there. They paid for the prednisone and cyclophosphomide, two very cheap drugs that I definately need to survive. Because I just had surgery and am at high risk of getting pneumonia, because I still have a legion in my lung, and because the cyclophosphomide weakens my immune system and makes me prone to bladder infections, I need to be on antibiotics. With my kidneys in such bad shape, though, I couldn't take normal antibiotics. They only thing thing I could take costs $1,100 per bottle, and my insurance company simply refused to pay for it. They also refused to pay for medication to prevent the nausea associated with the chemotherapy. Ironically enough, though, they were happy to pay for anti-anxiety drugs. I guess that's really indicative of the state of American society. Why pay for expensive drugs which will actually prevent me from getting sick, if they can just give me a cheap drug that makes me not worry about it?