The new migraine medication worked for one month and then quickly wore off. By the third month I was having migraines daily again. So, two weeks ago I was approved to try Botox. Treatment includes a series of thirty-one injections in the head and neck.
It is pretty disgusting. It is botulism. But, I am willing to try anything to help with these debilitating headaches that cause me great pain and vomiting and send me to the ER. The botulism allows the muscles to relax and prevents the nerves from communicating with those specific muscles, somehow reducing the amount of migraines.
Of course it is really early in the game but I have had fewer migraines and they are less intense. It eventually wears off, so my next treatment is supposed to be in March.
Some of the best news includes NO REJECTION! And, NO NEUPOGEN! My breathing capacity was down a bit and we don't know why. We won't worry too much for now. But everything else looked relatively fine. My doctor cut the Valcyte in half again and adjusted some of my other medications. This allowed my body to increase its white blood cells on its own. And, this meant, no nasty neupogen injections for the first time in months. Within about a week I stopped having the horrid bone pain. This is one I am overly excited about. What a huge, huge relief. Another crazy, horrible, debilitating side effect to check off the list!
Cutting the Valcyte down again is a risky move. This puts me at risk for CMV. My donor was positive, I am negative. This means I will catch CMV from my donor and will be treated for it. It is not IF I catch it at this point, but rather, WHEN I catch it. We will just deal with it when it happens. It is just part of post transplant life. It is what I accepted when I accepted these lungs. I am still having blood work done every two weeks and it is one of the tests they run so it will show up in the blood work if I don't exhibit symptoms.
The next time I check in it will be my one-year transplant anniversary. A year ago we were not sure if this day would come. But that all changed eleven months ago when I received the greatest gift--the gift of life. This year, while I celebrated my first Christmas with my new lungs, my donor's family celebrated their first holiday season without their loved one. I hope my donor's family finds peace in knowing their loved one provided so many people joy and happiness. Had they not said yes to organ donation I would not be here today. I have much to be grateful for.
