Three Years of CIDP/IVIG
AnonymousMay 28, 2008 at 12:45 am
I thought May 24 th was a date of importance. It is. It’s the first day I started IVIG for CIDP at the clinic in 2005. I had written down something about each treatment, dose, pump rates, length of infusion,drug company, lot number off drip bags, any problems and after effects. Amazing to see me two thick booklets on my desk.Three days a week every other week.
It’s well over 200 infusions and the first year I couldn’t handle the needed dose since I was so ill and not able to stay the whole time at the clinic.Thank goodness I was carpooled by several wonderful folks that year. I was the only person who had a beat up old mattress on the floor that I had to curl upon.Can’t go from 2 years of being bed ridden to trying to sit up all day in a recliner.The staff and patients have never seen anyone as sick as me.Hence the old mattress.
After 2 years I passed out on the way home and told the clinic no more driving for me. I couldn’t pay for a taxi.Found out my private insurance would pay full cost for home health nurses and IVIG/supplies.It actually costs me less having it done at home.Get it straight from the pharmacy and the cost is worked out by my insurance company.Infusions done faster and I’m already home.
May 2005 I was using two forearm crutches and barely able to take care of myself. The nerve pain was not even touched by 100 mg. fentanlyl pain patches and Vicodin.The IVIG kicked in after a few months and the pain slowly lessened.We added methotrexate to the mix 15 months ago to hopefully cut down monthly infusions-no luck yet. Today the pain is tolerable on good days-no high humidity /cold tempertures. I have cane I keep in the car for when I need it.
I am thank full for all improvements when the neurologist had originally said he thought there was too much damage to help me. He was so alarmed at my condition-what the other doctors had said was Fibromyalgia.I remember I was twisted up to one side and my hand was curled up in a craw. He diagnosed CIDP and cranked up the IVIG.No one can tell by looking a me anything is different.I keep a smile on my face.It’s a wonder I can garden and now see how all my flowers are blooming-like me. New leaves. New growth. New me.
My birthday is this week as I celebrate turning one year older and three years
Thank you FORUM for all your support and information””’
May 28, 2008 at 9:39 am
What a journey you have traveled! So glad to hear of all the improvements. It makes me CONFIDENT that hope for remission is still attainable. Happy Birthday and have a great year! One year older but one year better!
AnonymousMay 28, 2008 at 12:46 pm
Praise the Lord for your improvements and you for hanging in there for them to happen. Shows how tough you really are. I’m so glad you can get your treatments at home.
Most of all how wonderful you are on your feet again.
What a birthday present. happy birthday and continued improvement.
thanks for sharing and giving the rest of us new hope.
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