Nov. 1 – Gary received his first Rituximab infusion. Going in for this infusion he was at an ADL score of 15. This means he was having difficulty with balance, some with speech, swallowing, breathing, double vision and extreme fatigue. They gave him Benadryl and a steroid intravenously before beginning the actual medication. They did a GREAT job monitoring his vitals throughout the process. In fact, some of the best monitoring I’ve seen! (Paragon Katy, TX location) He slept most of the afternoon when we arrived home.
Nov. 2 – He woke very swollen. Throughout the day he had chills, was agitated, and jittery. As the day progressed he went into a hyperactive mode and said he had a sense of “brain euphoria”.
Nov. 3 – He woke still very swollen. His fasting sugar was 150…normally it averages 95-120. He was beginning to get some sort of breakout on his torso, urine was dark and it burned, and he was experiencing dizziness. However, he said he woke up feeling “refreshed” and said, “I feel like I’m back…my brain is awakened”. Still very tired, difficulty with breathing and balance. He decided to eat yogurt and drink lots of water along with taking extra care with hygiene due to new cuts on his arms. We did not want him back in the hospital with another infection.
Nov. 4 – He woke still very swollen. Fasting sugar 205. No new breakouts on torso and urine much better. Dizzy only when walking. After talking with his neuromuscular doctor, we decided to begin taking blood pressure readings: 176/88 pulse 91, afternoon it was 174/101 pulse 81, and evening it was 157/89 pulse 83. Breathing, double vision and balance still an issue; however, he said, “My thoughts are much clearer – like the fog has lifted”.
Nov. 5 – Woke with swelling having improved. Fasting sugar 141 and blood pressure 157/85 pulse 81. His physical issues such as breathing, double vision and balance remain along with fatigue. He has developed what he says feels like oily hands. He is really enjoying the mental clarity. 🙂
Nov. 6 – Another day where the swelling was much better. Fasting sugar 199 and blood pressure 152/87 pulse 86. His physical symptoms such as difficulty breathing, double vision, fatigue and balance remain. However, we do feel he is better than when he went in for his first dose of Rituximab.
While he still isn’t driving and for the most part simply hanging out around the house, he continues to work non-stop with his consulting business. He will get his second dose of Rituximab Nov. 15th. We have faith that this is the magic drug, and it won’t be long until he has the lead in the dance with MG.
Regardless what the future holds, we find comfort in knowing not only do we have each other and a wonderful support system through family, friends, and medical personnel, we have an awesome God who is on this journey with us. As Gary always says…..
He is blessed
i am blessed 