Infusion Day 4

Infusion Day 4

October 18, 2019

Tomorrow is my last day...I am in the homestretch now.

Last night I laid in bed with my legs raised while I finished my blog post.  When I got up to get ready for bed, I noticed my knees felt a lot better.  So the stiffness is definitely due to fluid retention in my legs that's actually a good thing.  Now, I know I need to get my feet up instead of trying to loosen my knees up by walking more.

The 5mg of melatonin was enough to get me off to sleep.  I was a little worried at first because I did lay there wake for awhile but I was asleep in about a half hour and when I woke up to use the bathroom I was less groggy but still able to get back to sleep; it seemed to work well.  I am going to take 5mg again tonight.

As I sit here now, I have about an hour left on my Lemtrada infusion.  Yesterday, the nurse moved my IV out just a bit and re-taped it to see if that helped the sensitivity.  It helped for sure but it's still a little pinch-y/stingy here and there; I am going to have them take it out before I leave tonight.  I've got a little bit of a bruise on my wrist right above where the two IVs were.  I did notice that there was a really light bruise on Tuesday but today it's just a little darker.  My knuckles are getting dried and cracking from all the bathroom trips/handwashing.  I put some aquiphor on them last night.  I started checking more thoroughly for any changes in my skin or lumps in my lymph nodes; I haven't noticed anything.  My skin still has more color but it's not yellowing; it's just from my blood pressure being a little higher.  

My blood pressure started out a little higher than it has been; 125/69 but it also went down to 95/70 which is more normal for me.  It's mostly been in the 115-120 (top number) range today.  I noticed yesterday that it doesn't take much to get my heart rate up right now.  I was moving around the house "quickly" yesterday morning.  I say it in quotes because I was just moving a little faster than my normal.  My heart didn't start racing but I did notice it picked up.  This morning the routine was a little different, my husband had to take my son to an appointment and a friend drove me to the infusion center.  After everyone had left, I had about an hour before I was being picked up and I suddenly got very anxious.  I was trying to get my bag and snacks together and suddenly just felt hot and needed to sit down.  I sat on the couch and slowed my breathing down. I sat quietly for about 10 minutes then did some chair yoga, pranayama breathing and a short meditation.  It definitely helped quiet everything down.  I mentioned the episode to the nurse and she said that could be another steroid reaction; anxiety and being emotional are typical reactions.  I've experienced panic attacks before and this wasn't rising to that level but it felt like it could have moved in that direction.  The nurse just recommended keeping an eye on it.

As a whole today went very smoothly again and I was extremely sleepy for most of the day again too.  I don't think I really fell asleep but I had a hard time keeping my eyes open for several hours in the middle of the day. My mouth has been very dry today but there are two other factors at play there.  I am wearing Invisalign trays right now and for some reason just having that plastic in your mouth really makes your mouth dry and because I have the Invisalign, I have been very diligent about washing them with antiseptic mouthwash and rinsing my mouth with mouthwash twice a day.  I don't want to add any bacteria potential.  I have the Listerine 'Naturals' but it still has alcohol in it which dries your mouth out.

After finishing four days, I have some tips for making the process more comfortable.  My goal in doing this is to be helpful for someone who may be deciding to do this medication.  I am a pretty private person so this is really out of my comfort zone to share so much publicly. 

Infusion Survival Tips:

1. Don't be afraid to pack what you need.  You might feel funny walking into the infusion center with a travel bag but you are going to be there for 8 hours.  Most patients are only there for an hour or two.  On Monday, I listed everything I packed and I have felt it has all been helpful. I've been a little too tired to read so bringing things to listen to as well is very helpful.

2. Make a plan for lunches.  Since you need to be careful about Listeria contamination (Jimmy John's super freaky fast delivery won't be your friend this week); it's really helpful to have an idea of how you are going to get lunch and what you might want to eat.  Whether delivered by a friend or delivery service or if you are going to bring your own.  You can bring raw veggies and fruit for yourself but you need to make sure you've washed everything at home to ensure it's safe.

3. If you need special snacks like gluten free, bring them yourself.  This infusion center as I am sure most have plenty of snacks; just not ones for special diets.

4. Bring some Aquiphor or something similar for your hands.  You will be going to the bathroom and washing your hands ALOT.  They want you to drink lots of water because this medication can affect your kidney so flushing it is important and they will be giving you two bags of Saline fluids too.

5. Do whatever you can to keep yourself calm this week.  You will be getting a lot of steroids that will rev your system up.  Don't look at news or stressful work projects or whatever tends to get you tense. The meds are doing enough work on you.

6. Have someone drive you to and home from the infusion center.  Originally, I was going to drive myself but by the end of the day I've been so drowsy that it wouldn't have been safe for me to drive.  I am really glad we decided to have my husband drive me.

This isn't related to the infusion center but I was talking to someone today and realized that it would be a really good idea to have your whole family get a flu shot, especially if you have school aged kids.  We normally don't get the flu shot for three reasons:
1. The conspiracy theorist in me wonders why they push the flu shot so hard. 😼
2. I don't like that they use mercury as the preservative.
3. We are pretty lucky and don't normally get the flu. *knock on wood*
Saying all that though, I personally have been getting the flu shot for myself the last several years and clearly for these next two years, it's pretty important to do anything you can to protect yourself from extra germ exposure.

Well, that's about all I have in me for today.  I hope some of this was helpful.