February 2024

Although February is a short month it has been filled with adventures. How dull life would be without them! Gary had his neuromuscular visit on the 6th. He was able to walk there using his rollator/wheelchair (which he fixed after our excitement in January) and his Life2000 breathing machine. I have to say the Life2000 made a HUGE difference. It allowed him to walk AND breathe. We have heard from Medicare that they do not want to cover this machine after all. Apparently, they feel the noninvasive ventilator he has next to his bed for sleeping is sufficient. While it can work, there are differences: the NIV does not allow him easy communication or the ability to eat or drink while using it. Its main job is to help him breathe. The Life2000 allows him to communicate, eat, drink, pretty much live a normal life. However, there are people who really don’t understand this disease and the variations of equipment who are the ones making decisions which are primarily dependent on finances. Whatever the end result, we will adapt and move forward. We have a mighty God, and we are comfortable in His promise to be by our side regardless what may be decided.

Gary’s neuromuscular doctor discussed adding a new medication in addition to Vyvgart. It is Zilucoplan. It is a shot Gary will give to himself daily. Gary already gives himself about 4 shots of insulin daily, so adding one more didn’t seem overwhelming to him. Before beginning this new medication Gary is required to get another meningitis booster which we did last week.

February 12 Gary had some pulmonary tests done which we will find out those results March 5th. We then went to his cardiologist who wants to do a heart cath due to his difficulty breathing and some test results from his hospital visit in December. We have that scheduled that for March 20th.

He is still on Vyvgart and Mestinon. The doctor is slowly trying to decrease his Prednisone. He is currently taking 30 one day and 40 the next. He has had some irritability with the lower dose; however, that seems to be easing up now after two weeks. Some withdrawal symptoms are to be expected since he has been on Prednisone since diagnosis in 2020. He is looking forward to hopefully getting completely off Prednisone as that would help with his sugar levels and more.

As of today, his main complaints are breathing, eyesight, and muscle weakness. I’ve heard that trying to walk for an MG patient is like walking through water in a swimming pool. That has to be tiring! Gary wakes feeling refreshed but exhaustion creeps in about 2 in the afternoon. We really notice these symptoms increase about a week before his next Vyvgart treatment. He will go in today for his next round of that, so we should see some improvement in the following days.

Gary continues to work his consulting job. He absolutely loves it! Listening to him you would never know the daily challenges he faces. ❤ We went over our March calendar this morning. We already have it filled and it’s still February! Of course we don’t give doctors all our time; after all, we must make trips to the beach, have fun family days, and more! 🙂

I continue to be amazed by him. Taking a shower, getting dressed, going out and about in town, and more are such difficult tasks for him, yet he never complains. He gives me that big bear hug, smiles, and says, “comparatively speaking…

I AM BLESSED”