Blessings

July? How can that be? It was March last week, wasn’t it?? I swear the older we get the faster the pages of the calendar turn!

As I mentioned several blogs ago, the neuromuscular doctor said Gary was pretty much out of options as far as treatment for his myasthenia gravis. Gary and I know that’s just for now as there are many studies going on, and his magic potion will eventually appear. He and I have been researching and reading about various treatments and do have a list of questions for his doctor at his next visit in a week. As far as current MG symptoms: double vision, right eye drooping, breathing issues upon exertion, and overall muscle weakness. We have decided that he should use the rollator (portable chair 😉 ) rather than the cane for short trips. This gives him a place to sit when he needs to rest which is quite often lately. For all other trips he is using his electric chair and LOVES it! This has given him freedom we didn’t realize he had lost.

His current MG medications are prednisone (he had to go back up to 40 mg a day), vyvgart, and mestinon.

About two weeks ago we had a scare. His bloodwork came back showing some major issues with his kidneys. We are so blessed to have wonderful doctors! His endocrinologist called to alert us and gave us instructions to call his cardiologist with specific details to share with him. I did so and the cardiologist called me the same day with a plan of action. Gary was taken off one diuretic, and another diuretic was lowered. We are still in the fine tuning stage; however, the most recent blood work has already shown improvement. Woo Hoo! They are considering a CardioMEMS HF System to help monitor the fluid build up caused by his heart failure. Isn’t technology amazing?

We brought the RV back home and will be taking it to Lake Livingston within the next few weeks. Hurricane season wasn’t worth the risk leaving it on the coast. Thank goodness we did this about a week before the most recent hurricane Beryl hit! We once again were very blessed. We did lose power; however, we had a portable generator we were able to use to provide power to the refrigerator and a fan for Gary. We are now considering a larger generator to power the air conditioner and Gary’s medical equipment. You never know what you need until you need it! 😉

Overall Gary has good days and bad days. He can have good go to bad in one day. Living with MG is a minute by minute disease; you never know what is around the corner. It certainly keeps us hopping!

As always Gary continues to work. He maintains that positive, can-do attitude and reminds us all daily that…

HE IS BLESSED