What a busy month! We attended the MGFA Conference at Methodist here in Houston. We enjoyed meeting other people like us who are on this same journey and gathering more information concerning myasthenia gravis.
There was so much more information than these slides show; however, I will spare you. 🙂 We are going to get more involved as we feel the more involved you are, the more you learn!
Gary had the blood work done to see if he is cleared to begin his new to him treatment, Rituximab. We did look up this medication and found, “Rituximab is very efficient in treatment of refractory MG with adverse effects being low”. Now if that isn’t exciting, I don’t know what is! We are now in the waiting period… blood work/urinalysis √, insurance ( ), appointment ( ). We will be talking with his neuromuscular doctor on Wednesday to determine if he will get the Rituximab or Vyvgart on Friday. In the meantime his symptoms are making more of an appearance which is to be expected. Brain fog for him has become very frustrating along with his eyes. I worry about his breathing. However, we simply adapt and keep moving forward! 😉
Gary is still in the lead with the MG dance and hasn’t stopped living life to the fullest. We recently went to Kerrville to see the solar eclipse. What an adventure that was! We have decided that any towing of the RV will be done in the morning with completion no later than 2:00. This is with LOTS of breaks. We will also be talking to the pulmonary doctor about getting a nasal pillow mask to wear with his non-invasive ventilator during the day. I suspect he is already making plans to decorate it to match his fancy portable walker! 😉
The rollercoaster ride continues. Changes take place day to day and often hour to hour. It simply keeps life exciting, and we appreciate the good times that much more. So thankful God chose us to be partners in this journey we call Life! As Gary always reminds us….
He is blessed
i am blessed 