The LEMTRADA Infusion Experience: A Care Partner’s Journey By Care Partner • February 27, 2019
Hello LEMTRADA Blog readers, I’m Melissa—Donnie’s wife. You’ve heard a lot from my husband about his treatment experiences. So for my first blog, I want to share with you what Donnie’s MS experience has been like from my point of view.
Being a care partner for someone with relapsing multiple sclerosis (RMS) is not easy. MS is an unpredictable disease, so I always have to be ready for whatever challenges the day might bring. Some days, Donnie might feel happy and energetic. On other days, he might not feel so well, experiencing fatigue or needing support from his cane to walk.
When Donnie was told he could receive LEMTRADA, I was excited for him and for myself too. We met with Donnie’s healthcare team to get briefed on what we had to do before, during, and after the infusions. Donnie had the necessary tests, including blood and urine tests and a skin examination. I picked up pretreatment medications that his doctor prescribed and some over-the-counter ones too like antihistamines. Then we were ready for the big day—five days, actually—Donnie’s first LEMTRADA treatment course.
We got up early and I drove Donnie to the infusion center. I have to admit that on the first day, I think I was more nervous than he was. There was so much going through my mind—what will this mean for our family? Did I remember to pack enough snacks? Who did I forget to tell? Did Donnie get enough rest? How would he react to the infusions? Would we be prepared for whatever the outcome was? Did I shut off the coffee maker?
Not long after we checked in, a nurse brought Donnie to the infusion chair. She started by giving him pretreatment medications, including corticosteroids, to help reduce the risk of serious infusion reactions. After that, the LEMTRADA infusion began.
I was able to sit right next to him the whole time, for 5 days of treatment. It made me feel better to know I was there if he needed anything—snacks, water, somebody to talk to.
To help me relax, I brought a few books with me and tried to get some reading done. That is, when I wasn’t being distracted by Donnie’s singing as he listened to music on his headphones. While Donnie is an okay singer, he shouldn’t quit his day job and move to Nashville. 😊
The time spent at the infusion center was long, but it went well. Donnie experienced some fatigue during his treatment course.
Donnie has a great support team from our family and friends, which is a huge plus. My parents spent the first few days of the infusions with us at the infusion center. They also helped watch our two girls to make sure they were okay while Donnie was getting his infusions. We are truly blessed, that’s for sure.
On the drive home, we were feeling hopeful. Now it was time to get Donnie home and let him rest.
I had a good plan in place for his infusion recovery. I knew that it was important for me to keep an eye on Donnie to watch for any reactions or side effects from the infusions. I made sure that the house was very clean, that folks who visited were feeling well, and that we had plenty of hand sanitizer to use. I also tried to make sure that Donnie stayed active, even if it was just getting up and walking around the house. The hardest part for me was to watch him struggle with the boredom of being home all day. Donnie loves his job and he missed his daily routine of being at work with his work buddies. So, during the time he was staying home to rest, I had to make sure he had his favorite movies, books, and magazines around.
Donnie has such a positive attitude about life, which makes everything easier. His smile is infectious, and you can’t help but be inspired by how he handles adversity.
My best advice to other Care Partners of someone receiving LEMTRADA is to make sure to keep sick people away, have plenty of hand sanitizer around, and be patient. Most of all, just be there for your loved one, and give yourself the credit that you deserve too.
What’s your story about being a good Care Partner? I’d love to hear it.
- CARE PARTNER
- YEAR 1
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