Apr 17, 2018 Latest post:
Apr 17, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Feel free to leave a message to let me know you’ve stopped by! :-) Thank you for visiting.
Most of you know that back in May of 2017 I began noticing symptoms of weakness and extreme fatigue. The loca neurologist was not much help, so I went down to Mayo Clinic in Jacksonville to see a specialist there. After more tests, she diagnosed me with CIDP (chronic inflammatory Demyelinating polyneuropathy). Basically it’s an auto-immune disease that my body’s immune system decided the nerves in my legs and arms were bad, so they started attacking them. Imagine a phone cord fraying...that’s what my nerves are looking like. Once they make it to the axonal part of the nerve, permanent damage is likely. We began treatment the next week (three days straight of high dose IVIG). A single dose of IVIG is made of over a thousand plasma donations. So every time I get the IVIG, I’m havinf others immunoglobulins infused into me. The goal is those infused ones keep my confused ones busy and they stop attacking my nerves long enough for them to start to heal. This is a chronic disease, and without my IVIG every two weeks, I would probably be wheelchair bound within 3-6 months. With every infusion there are risks, and I’ve deceleped aseptic meningitis and hospitalized for 10 days then. We hope we have figured out the pre medications I take to keep the side effects minimal. I have a home health nurse that comes to me and does my IVIG every two weeks over 6-8 hours.
Because my veins are so bad, I had a port implanted in my chest for my infusions and blood draws.
With a lot of prayer and research, we have decided that I will be going to Puebla Mexico to see a specialist in stem cell transplants for MS and a few other specific auto-immune diseases, including cidp. I can’t have it done here in the US because I have a genetic diagnosis of Hereditary Hemochromatosis that knocks me off the clinical trial acceptance list here. The doctors in Mexico are amazing though, and have actually been doing this longer than the trial has been going on here in the US. It’s definitely expensive, but nothing compared to what it would cost here. My mother and I will be gone for about a month from October to November. I will update this page periodically, so fee free to check back in. Love to all.