Back to being a health blog. Yesterday I had my first infusion of Entyvio for my Crohn’s disease. People are taking this news the wrong way. I did not get any sicker. I’ve had Crohn’s since I was a 12, you’ve never known me without it. I’m in one of the best periods of my life in terms of how much it’s affecting my life. I rarely have flareups. I occasionally get obstructions from past damage but not much active inflammation. This is purely prophylactic. When the doctor saw how damaged my ileum was she wanted to prevent further damage from being done. I’m having surgery that will remove some of the damage. After that I’ll be In my best shape since my last surgery.
My doctor said it was a 30 minute procedure. My appointment was for 1:45. I figured I’d have plenty of time the rest of the day. I didn’t. It took me a while to find the infusion room. The signs in the hospital were terrible. That led to me being 5 minutes late but that’s no big deal. I signed in when I arrived and my name was quickly called. I went to a second waiting room. I waited there for 20 minutes. Then when my name was called I was told, “You don’t need blood tests” here’s your paperwork take it to the infusion room. Ugh. They wasted all that time. Then someone called my name, it was the nurse who was going to treat me. He was just making sure I was there. I was not being treated yet. He just then went down to the pharmacy to order the Entyvio. They have to prepare it fresh for each patient. He came back from ordering it and sent me to the treatment room and put me in a comfy chair. I then waited an hour for the drug to be ready. I was not a happy camper. I asked him if this is going to happen every time? Much of it will. The medication is very expensive, perhaps $20k a dose. Some patients don’t show up. Some arrive and then leave. In those cases they are on the hook for the cost of the drug. It should get better as they learn to trust me and they’ll start preparing it in advance.
The actual treatment is noting. It’s just being hooked up to an IV in my hand. As nurses always point out, my veins are very easy to find. If you look at my hands when my arms are down, they bulge out. I spent the time reading Times and doing other things on my phone until I realized it was a perfect time to meditate. The chair is very comfy.
I finally got out of there three hours after I arrived. Things took six times as long as I expected. I’m having second thoughts about the treatment. It’s only every eight weeks but this is still a major inconvenience. More importantly I’m worried that it’s a waste of resources. Entyvio is recommended for patients that don’t respond to other immune-suppressants. I did pretty well under 6-MP which is still being used. That’s a simple pill I take four times a day and is far cheaper. It quite as safe or quite as effective, but does that justify spending so much money on me? It doesn’t cost me any money. It costs you, I’m on Medicaid. For others it costs everyone on the same insurance. This moral hazard drives up the cost of health care. I’ll discuss it with my doctor next time I see her.
I had lots of trouble remembering the name of the drug. I told someone it was something like Estivia. When I saw it written at the hospital I got my mnemonic. I was thinking of it as en-tiv-i-o, by syllable. But when I read it I realized it starts with Ent! As in Tolkien’s shepherds of the trees. That’s enough for me to burn it into my brain. At first I got the second syllable wrong, I thought it was tiv, and thought of the Tivali Garden in Copenhagen. I still use that to get the second syllable but remember that it’s a drug name so they like using letters that are worth a lot in scrabble. That’s a fact, it’s why there are so many Qs and Zs and Xs.
Jurgen the titular hero of one of my favorite books finds nothing as entertaining as observing the workings of his own mind. I’m the same way, part of why I love the book. I hope My Gentle Readers enjoy watching the workings of my mind as to me that’s what this blog is about. I had one friend who said that she could watch the wheels turning in my head. She enjoyed it.
As had been happening most nights I had a poor night’s sleep. I had planned on taking a nap at some point before I went out but spent so much time at the hospital that I couldn’t. My plan was to see Rebecca Loebe at Rockwood Music Hall. She’s a favorite and missed her last two shows. One annoyingly was because depression led me to making a bad decision. This time being tired was making me consider not going. The problem was I wasn’t sure if I had promised to merch for her. I sent her a text and asked and made two big discoveries. First, I wasn’t merching. Second, the show was not yesterday but today. I entered the wrong date in my calendar. Good thing I texted her. But now you can join me and see a great songwriter and great singer. I’m on a run of great music. I’m also an idiot. I would gladly put up with an expensive infusion if it acted as a prophylactic for stupidity.
I’m in the middle of a very busy stretch which is very much me being me. Between February 22 and 27 I have five concerts, a basketball game, and a medical procedure. It’s noon, I better eat breakfast now.
Wise Madness 