Why I'm Lucky

It could have been a lot worse. It could have been malignant.

The world of health care is complex. I got my first real taste of how health care works when talking to a woman with cancer during my first bicycle tour for cancer research. She told us her story of how her diagnosis had prevented her from getting medical insurance leaving her to live off of government-funded programs. In the years since hearing her story I’ve heard similar stories over-and-over about both children and adults being denied coverage due to pre-existing conditions. When the government passed the health care reform bill in the spring of 2010 this is one of the issues it addressed, so that in time, no one will be able to be denied coverage due to a pre-existing condition. However this is just one small piece of the world of health care. As I’ve discovered over the past year not all insurance is created equally.

When I left my full-time job to return to graduate school in January of 2010 I said goodbye to the “plush” benefit package I had during the six years in which I was employed by the State of New York and picked up the plan available through my school. I had briefly considered COBRA but after running the calculations I came to the conclusion that $500 plus a month was a bit much, and as an active, healthy young person the student plan through my university would be sufficient until I finished school.

Fast-forward three months to April of 2010. I was out riding my bike enjoying the unusually warm Minnesota spring when I stopped in a small park to stretch. As I was rubbing my legs I noticed an odd lump deep within the muscle of my left calf. There was no bruise and it didn’t hurt so I ignored it for a few days. When it was still there a week later I decided to call the health center to see if it was something I should be concerned about. The nurse who answered the phone told me that it was probably nothing but that she’d have someone check it if I wanted to stop by the center, which I did later that day. The practitioner who examined my leg agreed that the lump was probably nothing serious but advised me to continue monitoring it for changes and have my doctor at home look at it if it hadn’t disappeared in a month.

After the spring semester was over I headed home to New York where I continued to monitor my leg but saw no changes. Toward the end of May I called my doctor at home and made an appointment to have it looked at once again. She agreed that as I was young and healthy chances were that it was nothing but also suggested an MRI to make sure. Wanting to get to the bottom of the matter I agreed to the MRI but also began making phone calls, as I knew my insurance would only cover the first $750 of an MRI. I was advised that MRI’s vary in cost and normally run around $1,800. I wasn’t thrilled with having to foot $1,000 out of pocket but instinct told me that it was better to be safe than sorry so I went forward with the MRI.

I had my MRI on the evening of June 14^th, the night before I was scheduled to begin orientation for my summer camp job. I really don’t remember what went on that week at orientation, as the three days following my MRI were probably the longest and scariest days of my life. It’s strange because I wasn’t scared at all before the MRI, yet afterward waiting those three days for the results was absolutely terrifying. I managed to get a hold of someone at my doctor’s office in the afternoon of the 17^th who told me that while they still didn’t know what the lump was they had determined that it was most likely benign. It was a relief to hear this but it also still left a window open, as they still didn’t know what it was. Speaking with my doctor by phone the following week calmed my nerves a bit and she scheduled me for an office visit to check on it at the end of July. In time I calmed, I continued to self-monitor it but I’d been told that as long as there were no changes there was nothing to worry about. Instead I could shift my attention to other matters.

Having anticipated the MRI to cost $1,800 one can only guess my surprise when a bill came from the hospital in mid-July for $3,826. Take away the $750 that the insurance would cover and I owed them $3,076. Ouch! (Months later in November of 2010 I would discover that I’d been changed out-of-network costs when it should have been billed in-network a difference of $349, however my bill has yet to be adjusted as the hospital and my insurance company continue to argue over who is covering this cost.)

At my check-in at the end of July my doctor felt that there were no changes to my leg and suggested a follow-up MRI in three months. After explaining the situation with my insurance and that I really couldn’t continue paying $3,000 plus per MRI out of pocket she decided that she would see me in three months to reassess the situation and possibly refer me for a biopsy.

I ended up in Louisville, Kentucky doing an internship during the second half of the fall semester meaning my three-month check-up got pushed back until I was home during Thanksgiving break. I had not noticed any significant changes so a few weeks didn’t seem like a big deal. At this appointment my doctor seemed to think that the lump had gotten slightly larger but didn’t seem too concerned. As we had talked about over the summer she decided that the best thing would be to refer me to a surgeon to do a biopsy and get to the bottom of the matter.

My consultation with a surgeon was scheduled for mid-December after my internship was over and I was back home in New York. I really had no idea what to expect going into the appointment aside from the fact that I was concerned with the idea of having the lump punctured when they knew it was encapsulated. The purpose of the appointment was for the surgeon to assess whether he thought a biopsy of the lump was a good idea or not. After speaking with the surgeon for a few minutes and letting him examine my leg he told me that he had reviewed my MRI and felt that the lump was most likely something called an organized hematoma – blood that had pooled within my soleus muscle and hardened. These kinds of things usually dissolve on their own but as it had been eight months at this point he felt that chances were that it was not going to do that. He told me that he could schedule surgery to remove it if I wanted him to but that he didn’t feel it was urgent. There were two things that went through my mind at this point. One was that they still didn’t know what it was for sure, and as it had been there for eight-months I wanted this mystery lump out of my leg. The second thing was that while he said it wasn’t urgent, it was documented that it existed and with the pre-existing clause for adults not going into effect until 2014 (if they don’t nullify it before then) and my student insurance expiring in July, what would happen if I couldn’t get insurance because of this? I gave him the ok to schedule me for surgery thinking that as it wasn’t urgent it would be a few months before it happened.

A week later I got a phone call from my surgeon’s scheduler asking if January 13^th worked for me. I really wasn’t expecting the surgery to happen that soon but this was my chance to finally put the mystery lump behind me. While on the phone I asked her whom I would contact to get an estimate of what the surgery might cost me. I quickly got the impression that I’d just opened a whole new can of worms as she transferred me to my surgeon’s secretary to leave a message. Over the next few weeks I tried numerous times to get an estimate of what it might cost leaving messages and finally talking to a real person who said she would check into it and get back to me. Guess what, they never did. As I began to look into medical expenses I quickly came to see how complex the whole system really is, yet it still astonished me that they could not even give me a ballpark estimate.

I had the surgery on January 13^th and left the hospital that day. My leg was a bit swollen and sore but overall everything had gone well. I returned to see my surgeon for a follow-up visit at the end of January and learned that the lump was actually a benign granular cell tumor (a rare kind of tumor that’s found in the neck or mouth 50% of the time). Because of its rarity it had been sent to Mayo Clinic where they confirmed the diagnosis. Aside from the thick scar tissue where they had to cut through my muscle my leg has healed and while there is a chance of reoccurrence my surgeon feels that he took enough of a margin out that this chance is minuscule.

The initial bill for the surgery included surgeon and anesthesiologist fees and went through my insurance company in late January showing that I would owe about $650 out-of-pocket for the surgery. After getting caught completely off guard with the cost of the MRI last summer I was actually ok with this. Three weeks later another charge appeared, a much greater charge of which I calculated I would owe close to $5,000 out-of-pocket. I immediately requested a itemized bill which in turn showed that these were charges associated with the surgery, things like the hospital gown, the pen used to mark my leg, the drugs they administered during the surgery, the tools they used, etc. Having been charged as an out-of-network patient for my MRI I had a feeling that this may have happened again and contacted the insurance representative at my school to inquire. After examining my bills and contacting the insurance company she confirmed that I was indeed right.

I have yet to get a corrected final bill and am thinking it may be months as I’m still waiting for them to correct my MRI bill. Either way I’m expecting to owe a couple thousand dollars. Overall this ordeal has made me see things through a different lens and opened my eyes to the fact that health care really is a significant problem in this county. I know my situation could have been a lot worse and that those with chronic conditions often have medical bills that run in the tens of thousands of dollars and much more. I don’t know what I would have done had my tumor fallen in the small percentage of granular tumors that are malignant but I’m extremely grateful that I didn’t have to take that route. While I hope I never find myself in this situation again there is one thing I would do differently if such a situation were to arise. Buy a ticket to Europe. Health care is a lot cheaper over there.