Five hours from start to finish. Really, four hours is more accurate. The entire bag of Rituximab flowed through my body in four hours. Pretty good, if I may say so.
That first hour was spent trying to get my finicky veins to cooperate. Two different infusion nurses. Three different jabs in search of some kind of flashback of blood (not a nurse, sorry, but I think that’s what they were looking for). Two more questions concerning if I ever thought of getting a port – no, I’m not there yet – and then the usual one, “are you hydrated?”– same answer as always, “Unfortunately, no. I have a neurogenic bladder to consider.”
Finally, after an incredibly kind, persistent and patient nurse worked her magic, my disease-modifying therapy began circulating through my system, hopefully working magic of its own.
Such a joyful moment.
It was especially joyful because Dan reminded me how, in years past, we would have driven two and a half hours to have an infusion in Ann Arbor. Or when we made progress and stayed closer to home at an infusion center in Midland only 45 minutes away. But oh the joy now of a local infusion center here in Mount Pleasant (especially now that Dan also is getting an infusion for his disease-modifying therapy). Round trip: 15 minutes! Boom. Ta da.
I’ve used five different-disease modifying therapies to treat my multiple sclerosis in the 23 years since my diagnosis. There are many more treatment options available today. It never is a good time to be diagnosed with MS, but because of the available medications, I suppose times are pretty good right now.
Unfortunately, all drugs carry risks. Or expense. Or side effects. Or really, all three. Those are the realities we in the MS community must live with, but disease-modifying therapies also give us some power. By using a DMT, we try to manage the frequency and severity of relapses and our disease progression.
We try, but there is no guarantee. That’s life with a chronic illness, but we keep vigilant doing our part whether it is with an infusion, an injection or an oral medicine, anything it takes to quiet this MonSter.
Keeping MS quiet and stable is a good goal. As the incredible Dr. Aaron Boster says, “Let’s make MS boring.” Good plan, Dr. Boster. I’ll continue taking my infusions, cooperative veins permitting, four hours at a time.
Cheers to modifying medications and boring MS.
Nice insightful post, Jenn! I agree with you…it is a pretty good time to have MS with so many options. I drive about 90 minutes to the Mellon Center at the Cleveland Clinic for my infusion every six months. I could go someplace closer–but I like it there. Comfortable & familiar with the staff–it just feels right.
I also enjoyed your doctor’s perspective…”Let’s make MS boring.” (We wish it were!)
Thank you for sharing & continued success on your journey!