I went back to review my last post and realized I hadn’t posted for March! My goodness the time goes by in a flash!! Sometimes it feels like it was just yesterday we were searching for an answer to all of Gary’s symptoms, yet other times it feels as if we have been dealing with Myasthenia Gravis forever! One thing is certain, there is never a dull moment!
We have the BEST neuromuscular doctor ever! Every time we saw her she would comment that she felt there was more to Gary then MG. When he went into crisis in December, she admitted him to the hospital and began to run other tests to see if there was anything we were missing. It was the results of those tests that led us to making an appointment for a heart cath. March 20th he went in for what should have been a day procedure. Of course we know everyone loves Gary. He spreads happiness everywhere he goes. I’m sure the nurses didn’t want to see him leave, so they ended up admitting him to the hospital 😉 . It was discovered that he has “stiff heart/heart failure”. This was causing the swelling in his body which in turn was the reason behind his difficulty breathing. By admitting him, they were able to quickly get rid of some of the fluid in his body, and he was able to go home by the 23rd. I’ve always said you can find positive in every negative. Yes, the heart has difficulty moving fluid out of his body; however, with his new meds that fluid is no longer putting pressure on his heart, and he no longer requires his Life2000! That is no doubt an answer to prayer as Medicare still refuses to approve it. We are still in the process of figuring out all these new medications for his heart and what the future holds; however, we are blessed to have found caring doctors that listened to Gary and looked at the WHOLE picture. I can’t say enough about the doctors at UT Health Houston or the cardiology wing at Memorial Hermann on Fannin in Houston. The nurses, food service, pt, EVERYONE went above and beyond to make Gary comfortable and make sure his medical needs were met. Not sure what Thanksgiving will look like as he was inviting everyone there to Thanksgiving! HA!
Gary is still on Vyvgart; however we have seen a decline lately. His symptoms are progressively getting worse. We wonder if it could be his kidneys working overtime… who knows? He has difficulty with his vision often seeing double and blurry, chewing has become a chore, and while he can walk or lift things it is for the moment-no endurance. The positive? He begins another medication tonight for his myasthenia gravis – Zilbrysq. This will be a daily injection he gives himself. Hopefully, this in conjunction with his Vyvgart, Gary will soon see improvement. This is the medication with a $3000.00 copay – MONTHLY! Egads! Thank goodness we were able to find help!
As I mentioned earlier, his breathing is MUCH better now that the fluid is coming off. However, it was determined he needed a second opinion concerning his lungs and diaphragm. We have a WONDERFUL new pulmonary doctor also with UT downtown who is ordering more tests. She feels positive about the future. 🙂
Gary continues to work and maintains his positive attitude. While in the hospital he actually had a nurse from the cath lab come up to the cardiology floor to see him! He is touching lives everywhere he goes. ❤
I believe is was Ralph Abernathy who said, “I don’t know what the future may hold, but I know who holds the future”. That is so very true; Gary and I find comfort daily knowing we have a mighty God who is there with us ALL THE TIME. I will do my best to update this blog more often – especially with all the changes currently taking place.
As Gary always says when you ask how he is doing… “comparatively speaking,
I AM BLESSED”
i am blessed 