Saturday, October 24, 2015


Next up, I was going to write a post saying that when approaching the end of a race or tennis match or some other effort, you need to stay strong and not let up. I was going to give an example of the opposite  – when Donna and I had split sets with our opponents at the Districts in Providence and were ahead in the third 5 to 2, and then let up, and lost one game and then another...until we lost.

In subsequent matches, if one of us said "5-2," it was shorthand for "don't slack off."

I was thinking about this recently when eyeing my stock of Exjade (deferasirox) and thinking, as I have done most mornings for some six years, how much I did not want to take any more. But with my ferritin in the 800's the last time we checked, it was the home stretch, and I pushed myself to take it some more.

Five pills dissolved in water every day. Drink on an empty stomach. Feel queasy. Wait 30 minutes before eating. Even the reps who called from Express Scripts were annoying, repeating the instructions s-l-o-w-l-y.

In case you missed it: Exjade binds to iron and carries it out of the body. The price that Accredo charges – $8,114.90 per 30-day supply – is thankfully covered by my insurance. When I felt like skipping, I thought of the risks of the ferritin overload that had resulted from multiple transfusions.

If you are still with me, the point is this: Yesterday I got a call from the nurse practitioner who was covering for Melissa, who was not in the office. She said the prescription had come up for renewal and Dr. Alyea said I was done! I think my ferritin level was 742, close enough to normal and low enough that the small amount of blood loss during ECP will take care of it. I believe that when I started, it was around 8,000. Normal for women is 11 to 307 (nanograms per milliliter).

I psyched myself up on this homestretch for nothing. I guess psyching myself up most mornings for the past six years was enough.

Meanwhile, I have nearly $10,000 worth of pills left. You hate to waste something so valuable, but I'm afraid they are going to go down the toilet.

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