Infusion Day 1

Lemtrada Infusion Day 1

This morning we arrived at the infusion center at 8:20 to start paperwork.  This week I haven't been as nervous as I had been the previous 6 months since deciding to do Lemtrada but this morning the nervous energy was FLOWING.  I barely slept last night; I may have gotten 3 hours, maybe.  I had a hard time failing asleep then staying asleep.  I felt like I heard every little sound.

When I got up, I took my thyroid medicine; did some yoga stretches and meditation breathing. Maybe those of you who are 70s and 80s babies might remember a book call "Six Months to Live".  I remember reading it in class in fourth grade.  It's about a thirteen year old girl who gets leukemia. There is a part in the book when they tell the kids to imagine the chemo working in their body and she used the visualization of a Teddy Bear Army killing off the cancer.  Obviously, that stuck with me.  Anyway, along those lines I was letting myself picture the medicine as a glow; not fighting my cells but smoothly coating them and healing them.  I pictured my cells glowing with health. 

After, I ate; took my antacid, and two allergy pills; made lunch for the kids; fed the dog; added my son's slides to my bag...we were out the door.

I filled out what felt like a ton of paperwork, we met with the in-take nurse to get my vitals, go over my paperwork and answer any questions.  Then we made our way into the infusion area to pick a seat.  They gave me some Benadryl and Ibuprofen and within 30 minutes, I was officially hooked up:

The first bag was another Pepcid/antacid; the next was a steroid.  Both went quickly without an issue. I am sensitive to liquids in my veins.  Meaning, I can always 'smell' when they put saline solution in my IV between medications so the steroids did give me a weird 'taste' in my mouth but they had warned me about that; I just drank some apple juice and sucked on a Jolly Rancher.  It helped a little.  It went away within 30 minutes after I was done with the steroid.

Next was the Lemtrada with a bag of saline solution to keep me hydrated and to dilute the medication.  They checked my blood pressure every 15 minutes for the first hour and then periodically after that.

And yes, the fuzzy socks are a definite must!

Was I a little over packed?  Yes but my husband couldn't stay with me during the infusion because it's an open room and they have security/confidentiality protocol for necessary reasons.  

I had plenty to keep myself occupied.  I sent texts to family and friends; posted on Instagram which I don't usually use for that type of thing;  and played candy crush.  I was too tired to read so I watched a couple episodes of 'The Good Place'. I just needed something light and mindless and that fit.  Not sure how they got 4 seasons out of that show?  I made it through two episodes then got drowsy so I just listen to some meditation music, did my visualization and relaxed.  

They are pretty stocked here with snacks, candy and drinks but not many gluten free so I am glad I brought things for myself.  I had a Luna Bar and a packet of apple sauce before lunch and I ate my gluten free chocolate fudge pretzels after. Everyone needs a treat. 😋

My husband brought me soup and a grilled cheese sandwich around 2.  After I ate, I took Valcyclovir (herpes med that I will take now and for two years; looks like a horse pill 😝); my Vyvanse, Vitamin C, Vitamin B, and Zinc.  About 20 minutes later my heart was beating faster; maybe it's not a good idea to take the Vyvanse while I am doing the infusion. I have enough flowing through me that can raise my blood pressure.  I mentioned it to the nurse but it must not have been that big of an issue; she agreed that maybe the Vyvanse at this time wasn't a good idea. 

I finished my Lemtrada around 3pm and now I am just on a Saline solution while they observe me for two hours.  I'll be finished by 5.  The guy who was sitting across from me just left.  I noticed he was doing Lemtrada too.  Odd coincidence, I didn't think it was a very common treatment.  It seemed to be his first day too.  I wanted to ask him who his doctor was etc but he didn't seem to be a talker and I didn't want to pry.  He seemed a little younger than me too.

So all around, it's been a fine first day.  My IV isn't bothering me so I am just going to keep it for tomorrow.  I'll try to do a quick update this evening.

Update: 9:00pm.  Doing fine no signs of reactions.  Just very tired with a slight headache.