I was dx with MDS in Dec of 2002 and have now had 27 transfusions so my iron count got up to 3780.
Started desferal several months ago first with transfusions, then shots in the office, and finaly by home infusion. To the uninitiated, this means you have a small pump powered by batteries to which is attached a resevoir (called an cassette) which is filled with desferal. The pump is attached to a tube at the end of which is a small needle . . . about 1/2 inch . . . which you stick in your stomach and attach a special patch. You do this every nite for 5 days per week and it’s in for 8 hours while you sleep. It’s a pain in the fanny but it has brought my iron count down 800 points so far. Stlll a pain in the fanny
The Doctor decided to increase my dosage on desferal from 2 grams to 3 grams per nite and his nurse faxed the new RX to the Pharmacist but omitted the ‘8 hours per day’in the order . . . an error of omission . . . which I can forgive cause I like her.
So this would have meant that I would have had a needle sticking in my stomach for 5 days, 24 hours per day. The Pharmacist failed to question this . . . in fact he added the 24 hours to the order and sent me the perscription with included necessary supplies.
It must have been the prednisone I’m taking that kept me awke that night . . . or maybe it was the hand of God, but I did check the orders and the prescription and just happened to notice the errors. The next day I called the Pharmacist and asked :
1. Did you think to question the order?
2. Have you ever filled such an order for desferal before?
3. How was I to know to change the settings on my pump. (In fact I learned I can’t and this must be done by a tech.
To all questions I thought I got evasive answers and attitude but no admission of an error. “I have the Doctors orders”
So my message is this: We have to be aggressive patients and do a lot of questioning.
You cannot make assumptions that mistakes are not made and that all checks and balances are in place. We are in charge of our lives and cannot not turn that over to even well intentioned medical professionals even on any trust level.
All is well. Nor harm done. Home infusion treatments progress.
And I pray for an early approval of Exjade.
Dick
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