I’m reviewing side-effects I have experienced this week, how I’ve felt coming home from the clinic each day and finally the weekend in recovery.
Monday, the first day of #Lemtrada was the worst from a fatigue standpoint. #invisibledisease Thankfully, B planned to drop me off and pick me up the entire week from the infusion clinic because I was drained on Monday from being attached to an I-V all day and getting pumped full of steroids and a various cocktail of drug treatments. Makes perfect sense. To sit all day and be worn-out. I slept briefly, probably from the first day’s ‘excitement’ and anticipation that created both mental and physical exhaustion that left me so tired. My assigned nurse, Wendy, was fantastic. Other than the temporary I-V port in my hand that created only minor annoyance and discomfort, I experienced no pain. However, Monday night about an hour after getting home, it was clear that my heart-rate was elevated. I watched it and kept track while my heart-rate slowed to a more normal rate and I made Wendy aware of my increased heart-rate, when I returned to the clinic first thing Tuesday morning. Collectively on Monday night, I slept maybe a few hours the entire night. From past solumedrol drips, I remember sleep being hit and miss for about two weeks, but once all the lingering drugs were purged from my system, back to Jenn’s regularly scheduled programming for solid sleep, so understandably, I’m looking forward to some steady sleep in the coming days.
Tuesday went very smooth. I knew what to expect from the drugs feeding through the I-V and Wendy, checked on me more often than she was required. Once I made her aware of Monday night’s elevated heart rate, she relayed the information to my doctor, which made him concerned, so they kept me longer before sending me home Tuesday evening. They increased the frequency of vitals checks. I believe the standard Lemtrada vitals-check protocol for every day of infusion is take blood pressure, pulse and temperature every 15 minutes once infusion begins for the next two hours. Then, the third and fourth hour of infusion, vitals checks are every 3o minutes, but the infusion should be complete during the fourth hour. The fourth hour vitals checks are hourly.
Wednesday I woke and was like “enough already!” and drove myself to the infusion appointment. We live a half hour from the clinic and I appreciated my husband driving me each day, but other than the first day, it proved unnecessary #inmyexpertopinion and a waste of gas, so I got up and drove myself. Because I’m #independent. And practical that way. #gasaintcheap So I packed my office bag and cooler. And besides, I needed to hear some #Christmastunes. And November might be just a tad early for B to get on board with #chestnutsroasting and #JackFrostnipping. Wendy was again assigned to me Wednesday. By Wednesday morning I noticed my ‘regularity’ was gone, but remembered that as a side-effect of the prednisone. Oh joy. As if there wasn’t enough going on.
One of the most uncomfortable MS sensations I felt this year was the MS hug. I didn’t read about the phenomenon until halfway through summer, but once I absorbed what it meant, many questions were answered. An MS hug is the sensation of feeling like the body is being tightly squeezed. Generally, stress, heat and fatigue are factors that cause the feeling and when I told B about what I read, he was not surprised, pointing out that, “’16 was the hottest summer on record for NV, Sweetheart.” This brings me to the point that the not-so-affectionate MS hug was consistent to take my breath away and cause a feeling of borderline suffocation – as hard as I tried to breathe and as deep as impossible. All week I’ve struggled with that constricted feeling to get a decent breath, but have not disclosed it to the powers that be. As a stay-at-home mom and homemaker, my life this week was in complete chaos. My routine was gone and nothing was normal or predictable. Please don’t judge my decision to withold MS hug disclosure to my medical team. My creator is ultimately in charge of this Lemtrada experience and He knows I was selfish. I wanted to be home with my husband and Baby Girl each night to remind me of the light at the end of the tunnel because with each day, I was ready to cancel the Lemtrada thing. I was weary. I needed there to be a point. And B #husband #love was so great to encourage and remind me of God’s promise to provide healing through this.
Wednesday night before sending me home, Wendy removed the I-V port. It was nice to go home without having to worry about bumping-out the ace-bandaged eye-sore. And bumping it out was a constant concern since I have a difficult time “following the rules.” “Jennifer, don’t bump anything, don’t do anything, don’t live life.” Don’t do anything that could bump-out the needle.” Blaw blaw blaw. It’s not like I purposely try to bump the needle from the port. Sans needle, I did #laundry and #sterilizedbabybottles. Yay! My husband took this week off of work to ensure I could go through the Lemtrada treatment and he got stuff done at home. He took Baby Girl for walks, read to her, interacted with her, and tried to teach her some new stuff. B may not have done things exactly the way I would have, but I’m so thankful for him and his active involvement with Baby Girl. I missed them both. He messaged me throughout the week with short love notes and pics. Baby Girl’s bottom teeth came in the week before I was gone so pics of her with those bottom teeth were pretty sweet. I slept for a couple hours, woke about midnight and was ready to get stuff done. #prednisonemotivation. But then I got squirreled and played #CookieJam and #wordswithfriends and #triviacrack. This girl had the attention span of a fruit fly. #falsebusyness
Thursday was very exciting for me because I drove again and was past the Lemtrada halfway point. I was assigned a different nurse Veronica who, like Wendy, was also very nice. I guess Thursday was an uneventful repeat. Same song as Tuesday and Wednesday, different day so I’m really not complaining except about that regularity issue.
Friday was the final Lemtrada dose. I had a great experience all week except Friday. The new assigned nurse, Natalie could not have been more useless. She completely failed to perform all the vitals checks on-time. I finally noticed after an hour that no one had checked on my vitals like the protocol dictates every 15 minutes. I said something and asked if vitals were unimportant the final day. Let’s call her Nat and Nat claimed she had a hard time with getting the timing right. Really? Ya can’t get it right all morning, Natalie? Another nurse Marlene checked on me and when I asked about leaving, she said she’d check with Natalie. I laughed and said, “I wouldn’t bother because she hasn’t done any of my vitals in three hours at this point.”
Thank God, my life rests in the arms of my merciful Saviour and not halfwitted Nurse Natalie. #rnscholarshipfailure I left the Infusion Center on-time despite the IQ – deficient nurse and because of light traffic on Veterans Day, I arrived home in under 20 minutes. I parked my rig in the garage and just sat for a few minutes thanking God for the opportunity and that I was done. Then I cried and cried relieved I would not need to return for another treatment for at least a year. B had a bottle of #cab ready for me when I walked in the house.
Saturday morning I felt good and like I had some time to get a few things done while B took Baby Girl for visitation with her mom. But by mid-afternoon, I had a very painful stomach-ache that went on and on through Sunday afternoon. Finally, that painful tummy-ache went away mid-afternoon Sunday while BG napped, B played soccer and I finally had opportunity to shower after spending time #readBible and in #prayer while B was at #soccer. When B got home, I felt fantastic. #PraiseGod The team didn’t win, but he still barbecued and then we watched #TheLegoMovie. The week was much too serious and such a movie was a much-needed light hearted distraction.
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