Wow, what a week this past week has been! Since the diagnosis of Myasthenia Gravis and the doctor ordering IVIG treatments, it has been a whirlwind!
I've had some questions about what exactly is IVIG. I found this information on Myasthenia Gravis News website.
Intravenous immunoglobulin (IVIG) is a compound that consists of immune globulins (immune proteins) that are usually administered into the bloodstream. It is used to treat patients with severe or rapidly worsening myasthenia gravis (MG).Autoantibodies in the blood that target acetylcholine receptors are the key problem in myasthenia gravis. IVIG consists of immune globulins collected from donors and acts to destroy and neutralize these autoantibodies in the bloodstream and block the production of new autoantibodies.
It has been 10 days since my first infusion. I have learned much over the past few days, so I thought I would share.
~IVIG is very strong. Very. I have bruising where the infusions entered and traveled up my veins. One nurse said that I don't tolerate it very well and it burned my veins. It's still sore on my arms.
~I have adverse reactions to IVIG. Which translates to migraines, which leads to vomiting. Not fun. I have a great doctor though and after having that kind of reaction after the first dose, he called in an IV steroid to be administered before treatment. That helped a ton!
~In home nursing care is amazing. My insurance company and doctor use Option Care. The nurses that came to my home were very professional, very skilled and very caring. The Pharmacist with Option Care was also very attentive and even called again to check on me today. When they knew I needed the IV steroid the very next morning before my infusion, they drove the medication up from St. Pete and delivered it to my house at 9 pm that night. How compassionate!
~IVIG doesn't leave your system very quickly. My last infusion was on Saturday. Sunday I thought I was doing okay, although tired and not feeling great. Monday I woke up very sick. I had the migraine back and felt horrible. Tuesday was a little better. I think it's just going to take a while to get used to this.
~My parents and Mam-maw are amazing. When I started feeling horrible I told Patrick that I needed my Mom. They came earlier than planned. Mom washed my hair for me. Mam-maw cooked. Dad entertained the children. There is something about knowing your kids are taken care of that makes things easier to handle. And we just happened to have a birthday in the midst. My family is amazing and I miss them already.
~My kids knew I was hurting and I hate that. I had fresh wildflowers by my bedside and table each day. I had pictures colored for me. And sweet words of I love you.
~My church family is wonderful. I've had flowers, meals galore, hugs, and gift bags and texts... you never know how much little acts of kindness means to someone that is hurting.
~My husband is my best friend. I realize his life is taking care of me. And he does it with love. I am so thankful for him!
So, the plan is next month to do a 2 day infusion. Same with the month after that. And the month after. We'll do it for as long as I see results. Which so far haven't happened yet. The pharmacist said that some people don't see results for 6-8 weeks. So we are approaching this with prayer.
Thank you so much for those that have prayed for me! Now, it's off to a new week!
Thoughts and prayers are with you dear Kami. Thank you for taking the time to explain things amidst all the other things you do and the recent sickness you feel. Big hugs. xx
ReplyDeleteStill praying for you!!
ReplyDeleteJoanna
We will continue to pray for you as well, dear friend. Praise the Lord for an actual diagnosis. We'll pray that the medicine will help you and take away your symptoms.
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