Sometimes I find a reason to skip a day or to put it off until later in the day. For example if I have to leave the house early and don't have the time to wait for 30 minutes to eat after I dissolve the five pills in 7 ounces of water. After chugging it down I get a burst of instant nausea and heartburn. A nice way to start your day.
But then I remind myself why I need to keep taking this very expensive drug (luckily covered by insurance) whose trade name is deferasirox. I must keep chipping away at my high ferritin level so that my liver can have relief from all that stored iron resulting from so many blood transfusions.
For motivation, I need only look at the list of the problems that according the Iron Disorders Institute are caused by iron overload: Excess iron in vital organs, even in mild cases of iron overload, increases the risk for liver disease (cirrhosis, cancer), heart attack or heart failure, diabetes mellitus, osteoarthritis, osteoporosis, metabolic syndrome, hypothyroidism, hypogonadism, numerous symptoms and in some cases premature death. Iron mismanagement resulting in overload can accelerate such neurodegenerative diseases as Alzheimer’s, early-onset Parkinson’s, Huntington’s, epilepsy and multiple sclerosis.
The results of my latest ferritin test were still pending on my last visit to Dana-Farber. So Melissa emailed them to me this week, and I am happy to report that the level is down to 1601.
This might not seem great considering that normal ferritin range for women is 11 to 307 (nanograms per milliliter). I forget what mine was when I started this process, but I know it was around 6,000 or even 7,000. When it goes below 1,000 I will really see the light at the end of the tunnel.
I wish that I could share this with PJ. It was one of the things that we compared. She was the one who suggested addressing it additionally with therapeutic phlebotomy, something else that I like to put off until I remind myself of the benefits. It has been working out for me to get this done at the Kraft Blood Donor Center at Brigham and Women's when I have another appointment and am staying overnight. But I am overdue and need to schlep over to Baystate to get it done again asap.
PJ and I had our own little support group for these things. You can't expect most people to jump for joy when you tell them your ferritin is down. Only someone experiencing this battle can really get it. But I am sure my health care team can. I look forward to the day when I can toss my leftover pills in the trash. That is like throwing away gold, but I imagine the manufacturer, Novartis, does not want them returned.
Maybe I can do it ceremoniously at Dana-Farber. That would feel good.
