Coping With Myasthenia Gravis

My dad is 65 and until this Christmas he was the most active man i had ever seen, then he got sick.
Dad’s eye began drooping and he got double vision the day after christmas. Mom thought maybe he had a stroke in his eye, so she made him a doctors appointment for the next day. the doctor did lots of blood test and sent him for an MRI All of his test came back fine, but his vision was still double and the drooping had switched eyes, we still don’t know the reason for that. Anyway, dad was admitted into Holston Valley were had had more MRIs, MRA’s, x-rays and who knows what else. They also lost him ( didn’t know where he was) at one point. (he was returned to the ER instead of his room, and according to the computer he was in the CT lab…) Yep, i was livid that night! They thought it might have been a tumor on his lung. they also did a test for myastenia [myasthenia] gravis. He had a negative reaction to that, so they sent him home to wait for blood test results on January 11th. He had a full body scan (PETT scan) on the 16th that indicated no cancer anywhere.

On January 21st, dad was told he had myatenia [myasthenia] gravis. He had a full body scan (PETT scan) on the He went to see doctor Bogan on the 24th and he was afraid dad would stop breathing so he went to Indian path’s ICU (holston valley was full) and got IVIG treament. He came home on the 29th.

On Valentines day dad couldn’t swallow his meds so he went back to holston valley. He began Plasma pharesis treatments that night and had to be put on the ventaltor the next day. He was also given a feeding tube in order to continue his meds. Dad really can’t miss a single one of his pills. Thats when we met doctor “Shake”, a super nice man who dad really likes. He stayed on the vent for a few days to rest, but was of of it a few days before his surgury on 22nd. He had thorasic surgury to remove enlarged lymp nodes and an 2.6 cm amyloid that was sitting on his upper right lung. He was on the vent for 4 days after surgury, but did fine after that. He was released on March 1st.

On the 14th of March His swallowing “wasn’t right”, so he checked in to holston valley and began his 2nd round of plasma pharesis. he also had a feeding tube again. he seemed to do ok and was released on the 25th.

*Through out this ordeal dad lost about 45 pounds and looks kind of scarcrowy right now. One of his meds reduces his appitite, and chewing makes him tired so getting him to eat can be a real struggle somtimes.

According to Dad’s neurologist, dad has the most severe case he has ever seen.

We have faith that dad will get better and God will see us through this, but waiting has to be the most horrible prescription.