What a ride!

The rollercoaster ride Gary and I are on would put any amusement park ride to shame! So many twists, turns, slow inclines up, and sudden drops keep us…what’s the word…entertained? Needless to say there is never a dull moment here!

This round of Vyvgart is quite different than the last. Remember, each round is one infusion given each week for four weeks. Gary had his last Vyvgart dose yesterday. His ADL score this past week did go down to a 10; however, the next day was up to an 11. Honestly, had we waited and done the rating later in the day I think it would have been higher! His right eye closed completely. I have seen it almost closed but never completely shut and unable to open it. He is not bouncing back as quickly this time. We feel he didn’t recover as fast because it took so long to get an appointment for the infusion; consequently, Gary got progressively worse waiting. It is one of the few times I felt he should have gone to the ER. Hospitals are struggling with staffing which in turn makes it difficult to schedule. However, we have decided to make some positive changes in that category. (More on that in a later blog)

As of this morning, he is doing MUCH better. Symptoms are for the most part under control. He still has to work at opening his right eye, but all other issues such as walking, breathing, chewing, and talking have definitely improved. His mind is once again sharper also. Everything we have read and doctors we have spoken to say the fog is not due to Myasthenia gravis. However, we have talked to other MG patients and read stories where they experience the same thing. All we know is when Gary is in a flare, his brain function is very foggy, and after treatment his thoughts become clearer. He still has a few issues with retrieval, but that is usually after I have asked him a question. Selective perhaps? 😉

I have to say Gary is such a trouper when getting his infusions. He always gets the IV in his hand. While the veins are at times elusive there, they are much more cooperative than the ones in his arms. Yesterday Chris was his nurse. Gary loves to tease and joke with all the nurses and staff keeping everything lighthearted. One would never know how much Gary is struggling both mentally and physically because they are too busy laughing and enjoying life courtesy of my wonderful husband. ❤

He did go to his pulmonary doctor last week who is concerned about his breathing issues. The doctor was wanting to put him on a ventilator and oxygen. He wasn’t happy when Gary and I made the decision to wait on that and instead see what this round of Vyvgart would do. We discussed and agreed he would have another Pulmonary Function Test when Gary was stable again as a comparison. His chest x-ray also showed a possible issue with his spine. We have an appointment with a rheumatologist to see about that. As I said…never a dull moment! Ha!

We are hoping to be able to take the rv out soon. A trip to see my dad, visit Gary’s parents gravesites, and perhaps a little wine in Fredricksburg are all something we are looking forward to. Fingers crossed that adventure is just around the corner.

I am so thankful God put Gary and I together as partners to ride this rollercoaster of life together. ❤ As Gary always says…

I AM BLESSED