Aries Warrior

I'm going to do my best to tell what my journey has been so ask questions if you need to. I'm 77 years old.

First signs of MG

Oct 2020 my left eye drooped when hiking. I had been feeling winded. I went to an optometrist that referred me to a plastic surgeon and saw him August 2022. That surgeon then referred me to a neurologist and saw him on October 2022. One year had passed. Found out I have myasthenia gravis, a rare autoimmune disease not curable. That neurologist sent me for a CT scan that revealed a 1.6 encapsulated nodule in my upper right lobe He then referred me to a thoracic surgeon.

That surgeon ordered a series of tests in order to do a robotic surgery to remove the lung. One test was a guided needle biopsy. Performed June 29th, 2023. I had a massive pulmonary hemorrhage and coded on the table with many doctors in attendance. After fracturing ribs, they revived me 12 minutes later.

Continuous treatment and care

I was in ICU 23 days lucky to be alive with no brain damage. Intubated more than once as MG my autoimmune disease was in crisis. You can image how many times I was in distress. No one knew I had a bad valve in my heart until the heart attack. Same symptoms as MG. I had a TAVI operation to replace my calcified valve during my ICU stay. July 24 2023. I was sent home to recover and had my upper lobectomy operation robotically on August 29. 2023. And a removal of a cancerous thymoma that contributed to my MG.

Managing symptoms

Today I make plans for radio therapy to be sure all cancer cells on my thymus are gone. I am fatigued, have nerve damage and take Tylenol every 6 hours to stay on top of the pain from nerve damage. Needless to say I fall asleep just sitting and yet have problems getting a full nights sleep.

You are not alone

Why am I relaying this? If I can stay optimistic. If I can put one foot in front of the other in measurable baby steps so can you. I plan on celebrating Christmas this year cancer free and in remission for my autoimmune disease.
I religiously had an annual physical and also took part in a breast cancer program for 35 years as my Mom died from breast cancer. I was always active and did not smoke or drink except socially in my 30's. Many years ago. I have a wonderful support system. My husband of 56 years is my advocate and looks after me.

If you find yourself in this story I have shared then you know your not alone.