Saturday, March 22, 2008

Interesting Friday....

I was scheduled for my monthly Tysabri infusion on Friday. I knew that it would take about two hours so I scheduled it after lunch. I went ahead and scheduled my physical therapy session afterward. I figured I might as well make the most of my four hours of PTO. I arrived at the infusion center about fifteen minutes early and my nurse was still at lunch. They took me back to a treatment room, pointed me to the recliner, and handed me the TV remote. I always seem to watch the Food Network during my infusion. It is one of my favorite channels and I no longer get it at home. I was watching the clock pretty close since I needed to be done on time to make my PT session. I should know better.


My nurse was a bit late getting back from lunch but I told her it was no problem. Actually, it wasn't yet as I left an hour leeway just in case. She got my IV started an placed a port on the catheter. After getting the Tysabri set up on the IV pump, she hooked my up and got the medication infusing. After about 10 minutes of visiting and watching Rachel Ray, she decided to ask me the pre-infusion questions on the paperwork. I bet you can see where this is going. She quickly discovered that we had an issue with two of the questions on the questionnaire. She picked up the phone and called my neurologist to see if it was okay to infuse the Tysabri. No one answered the phone so she had to leave a message. She decided to discontinue the infusion until we heard back from the doctor.

To make a long story short, it took 45 minutes to get a hold of my neurologist because he was on vacation. I was impressed that he called back at all. When I am on vacation, it takes me a bit to return calls. The nurse was instructed not to infuse me because I had recently received the Solumedrol infusion and there is a possible increased risk of PML when you mix steroids with Tysabri. To say the least, I'm not real thrilled that she forgot to ask the questions before the infusion. I hope that it matters that I only received about a quarter of the usual dosage. I do know that the real risk is minimal, bit still....


I ended up with about an hour and a half to burn before my PT session. Naturally, I went and took some photos! I swung by St. Francis Hospital and got some shots of their BK-117 Life Flight helicopter on the helipad. I then headed down to a local retention pond to photography some of the local birds. I must have taken a hundred duck and gull photos! I got so involved in what I was doing that I was almost late for my PT. This was the first time I really got out and tried to walk around with my camera using the cane. It was a bit of a task to say the least. I ended up with a couple of nice photos so it was worth the effort.




Anonymous said...

I guess I am a bit confusion on your Touch site. Each time I go for a Tysabri infusion, I have read a booklet. When I get in the room, the Tysabri nurse comes in and does vitals. Then another nurse, the adminstrating nurse asked me questions from a form, every time I go. One of the questions is about Soludomedrol.
I have to sign the paper.......
Then she will proceed, but not until those two proceedures are completed. Reading, signing the question paper. That would be a interesting Friday. Nice pictures by the way. I love taking photos myself :) Stay well

Unknown said...

Hi Patti,

You are correct. I started Tysabri in October and just learned today what the procedure should be. At my site, the nurse meets me at the desk, takes me back, gets everything started then ask the questions and hands me the booklet. They usually have me sign the paper after we complete the infusion.

Unknown said...

Hmm, I do hope they are following the proper procedure now. You are a very lucky man to have the Dr. Return the call, from Vacation. Continuing with the infusion before proper procedure's were taken, you could have been terribly poisoned or worse! Yikes ! Cant have that. I like the Helicoptor pic. I have stood out side those doors there and watched them come and go. Truly awsome people who work the 'Bird's',