Well it's after midnight.... I fell asleep for about an hour and woke up in pain. So, I thought I'd get up and write a little blurb and give an update on my health situation and the roller coaster of a day it's been!
Today is the first time I've felt like my health insurance wasn't on my side. As I said in my previous post, I had been waiting to hear when I could start Remicade treatments again at a last attempt to get my crohn's under control before needing some kind of surgery. Well, my doctor's office called to say that my insurance DENIED the pre-authorization to allow me to have the drug. So, if I wanted to have the drug, I would have to fork out the $4,000 plus per treatment and my insurance will cover nothing. Since piles of money aren't flying out of my you-know-where, Remicade is not an option without insurance coverage. The insurance company denied the authorization because I had been on the treatment before and I stopped the treatment because it was not working as effective. So, in a way, I guess I can't blame them for denying it according to my history. Why should they have to pay all this money for something that stopped working for me in the past already? I'm torn because I work for the insurance company.... I have seen this happen on many, many occasions and it is their way of trying not to waste premium dollars to help keep premium costs lower for members and have more available to pay claims that are medically necessary. So, I guess I have to give them kudos for that. On the other hand, who is more aware of my medical history and condition? The insurance company or my doctor? Anyways, I'm torn.... My insurance suggested that I try Humira, which is similar to remicade. I would give myself a shot every couple of weeks. My doctor has talked to me about that drug in the past, and he didn't think it would work well for me given my history.
Ironically, I had scheduled myself off for the afternoon expecting the Remicade to be approved and that I would get in for my first treatment today. I found out I wasn't approved for the treatment early this morning and planned on just staying at work for the rest of my shift. The doctor's office was supposed to call me back later in the day with the next steps I should take... Then, PAIN STRUCK. I got this terrible pain in my abdomen that shot into my back.... It felt like there were these little elves with little knives poking me all over inside. (I don't know why I chose elves.... maybe trolls or smurfs would work just as well) I was already disappointed that I couldn't get my treatment, and this added pain made thinking clearly almost impossible. I decided to go home for the day since I had it scheduled off already. I spent the afternoon with a heating pad on my stomach waiting for the doctor to call, and I would tell them what was going on. The doc's assistant called and said that my doctor is going to appeal the denial because he feels Remicade is really my best shot right now. I am to continue taking prednisone (which I have nicknamed "The devil's drug") at a smaller dose and iron supplements to fight my recent diagnosis of anemia. I told the assistant I was having pretty bad pain, and she said she'd talk to the doctor and call me back with further instructions.
5:00 rolls around (when the doc's office closes) and I still haven't heard anything. My pain subsides enough so I can do some Valentine's day shopping, and then I was to meet Natalie at her work to go visit her friend Stacy that had a baby today. Things didn't work out to go see Stacy, and my pain started to come back again. I decided to call the doc's answering service and page the on- call doctor.
I spoke with a Dr. Sossenheimer (one of my doc's partners) who pulled up my medical history. I told him that my remicade treatment had been denied, and after looking over my recent CT scans, he thinks it would be a good idea to talk to a general surgeon since I'm obviously not responding to medications. He went over the risks of getting Lymphoma if I continue treatment with these immuno-suppressive drugs, and that I might not be able to wait for my insurance company to review my doctor's appeal for remicade. He says if I'm in that much pain, that I could go to the ER and have a small intestine resection surgery tonight! He even told me the name of the surgeon on call.... He said my other option was to get some pain meds and wait until talking to my GI doctor in the morning. I told him that the pain meds would be fine for now, and that I'd rather talk with my doctor first than have emergency surgery tonight.
So, that's where I stand right now...Pretty frustrating, but getting somewhere slowly I guess. I really think I'm ready to have surgery and take a break from these medications for awhile. We'll see what the doc has to say tomorrow.
