Round 26!

Last week was round 26. I wasn’t sure who my nurse was going to be, as my regular nurse is still out sick, my second regular nurse was having surgery, and I told them I didn’t want someone I didn’t know. Thankfully, the weekend before my infusion week, I got a call from my first nurse, Gail. She said she was going to be my nurse all week. Yay! At least it was someone I knew. Gail was my nurse when I used to get my infusions at the infusion center.

The week went pretty well. I slept through most of it! I was so tired, I couldn’t keep my eyes open. The side effects weren’t that bad. Gail would remind me around 11am to take an 800mg ibuprofen, which helped keep the side effects at a minimum.

I felt like the week went so slow. Maybe because I slept through it all, but it just dragged. Here are some pictures from the week:

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All hooked up

 

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Day 3

 

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So, that was it. Not too exciting. Same thing, every 3 weeks. I’m supposed to get my next infusion July 2nd, but the brand of IVIG, Gammagard, is having a national shortage. They’re trying to switch me to another brand, but the insurance is giving the doctor and infusion company a hard time. More to come about this!

I hope everyone has a good weekend!

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Life update and round 25!

Hi! I know it’s been awhile since I posted. So much has been going on. Geez, where do I begin?

After my last round of infusions, my insurance denied continued treatment! Really? I’ve been on IVIG for 2 years now. I don’t understand what these people want, but it is what it is. I found out about the denial right before I was supposed to do Round 25. Nothing like last minute! Anyway, it took them several weeks to get everything fixed and worked out. During that time, I was very sick, because I didn’t get my treatments at exactly 3 weeks like I’m supposed to. Plus, I was getting ready to go on vacation, and was afraid I was going to have to cancel my vacation, because I was so sick.

Right before I was to leave on vacation, the approval came through. By that time, I was getting ready to leave, and there wasn’t any time to get a week of infusions in before I left. So, I left for my vacation, and had a wonderful time. I wasn’t sick or in pain not one time. My body totally needed this break. That’s what Hawaii will do for you.

So, like I said, the insurance approved continued IVIG infusions right before I left for vacation, but what I found out was, that they only approved 12 treatments, or 3 rounds. WTF? This whole process is so stupid, and I’m really getting tired of it. So, I’m approved through the first week of July, then I need to see my neurologist, and they have to put in for more continued treatments. I’m actually considering stopping treatments, just because I’m tired of the fight to get them, plus the side effects have been crazy lately. I hate feeling like shit!

The week after I got back from Hawaii, round 25 started. It wasn’t a good week. I didn’t have my regular nurse, and the side effects really bugged me. I slept most of my infusion each day. I never do that. Also, the 3 days after my infusions was so much worse then any other time. I don’t know why! I was so sick I couldn’t even function. I was barely able to take a shower, and I just laid in bed for 3 days. It was horrible!

Here are some pictures from round 25:

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Day 1!

 

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Day 2! My liquid gold!
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Day 3! The best therapy dog ever!
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Day 4 and done!

So, that’s it people. It took me almost 3 weeks to get this post out. Like I said, I’m seriously considering stopping this treatment. Will discuss with my doctor at my next appointment in July. I’m just so over it!

Have a good week people!