Yesterday, September 19, 2016, was my last infusion for Gaucher’s disease. Today I started the new pill form of treatment - Cerdelga.
Instead of taking an hour out of my day every other week to gather saline syringes and bag, heparin syringe, 3 empty syringes, alcohol wipes, dressing kit, huber needle, machine pump, machine pump tubing, filter, cannula, syringe needles, sterile water, and 10 vials of drug, clean and prep my port for access, get stabbed, flush my port, mix 10 vials of drug, take the drug out of the vials and put into a saline bag, connect the bag to a machine pump, turn the pump on and wait for it to start up, select my program, prime the 5 feet of tubing, connect it to my IV, then start the pump, put the heavy pump into a fanny pack with the tubing coming out of it connecting to my chest, then wait around for an hour, carrying a heavy machine that beeps extremely loud when the bag gets low, and again when the program has completed but the bag still has drug in it. Refill the bag with saline to get every drop of liquid platinum out, restart the program, wait for it to finish, disconnect everything, flush my port, then end with infusing heparin. Not to mention putting all the supplies away.
Now what do I do? I pop a pill out of a foil pack and swallow it. Done. No more putting numbing cream on my port 2 hours ahead of infusion time. No more being attached to a machine I never wanted. No more dealing with pumps failing and throwing away $15,000+ worth of drug. No more scheduling my life around my infusions.
I have been getting infusions since 1991. Every other week for over 25 years, not counting the cluster that was the great Genzyme contamination where me and hundreds of thousands others weren’t able to get medication for months because of a shortage brought on by a contamination. Also not counting the month here and there that I was forced to miss because of insurance screw ups and pump failures. Now I pop a pill and go on with my life.
There is no easy way to explain all the feelings I have right now. Dealing with the genetic diseases I have and having to go through treatment with no end in sight. Having to deal with the side effects; pains, fatigue, fog, and so much more. All I have to do now is take a pill. Will I have side effects from the pill? I’ll find out shortly. Will it work as well as the infusions did for me? I’ll see in a few months. I’m not getting rid of my port just yet. I’ll keep it a few years just to make sure I’m doing well on the pill.
I can’t believe the day has come where all I have to do is take a pill. This is amazing!