Had my third infusion of intravenous immunoglobulins today. My breathing has improved markedly and my speech is getting clearer.
The staff here at Longs Peak Hospital in Longmont, CO are taking excellent care of me.
Last night, around 3 am I had a gagging fit when some mucus coughed up from my lungs caught in my throat and was blocking my airway. I had enough presence of mind NOT to panic, hit the call button, and then do my best to hork it up while waiting. In less than a minute I was surrounded by no less than four nurses, one a respiratory therapist. They made sure I was safe at all times, standing ready to intubate me if need be. Their dedication and unfailing kindness have been a huge blessing.
I’d like to call out some of the folks personally and thank them:
First, Dr. Susan Stamm, who was vigilant and an excellent diagnostician when she first referred me to neurologist Dr. Paul Sykes. Sykes quickly realized Dr. Stamm was correct in her suspicion that I was showing signs of myasthenia gravis – a now-rare but still quite serious autoimmune disease. A quick test for specific indicators bore out this diagnosis. A CT scan the next day cleared my thymus of cancer.
I work from home doing software support so the plan was to have me get this treatment at home – however, this could not happen that Friday so I would have to wait till Monday to get started.
However, on waking Friday morning I realized I was having progressively greater difficulty breathing – a sign that my diaphragm was now involved. I had been keeping my doctor apprised of my status via a telehealth website provided by the Univ of Colo Medical system. Upon reading about my breathing issues, Sykes immediately advised me to go to the ICU and begin the infusion therapy immediately.
Boy am I ever glad I did!
By Saturday night (last night as of this writing) I was a hurting trainwreck, poked full of holes from IV attempts (my veins are very hard to find), exhausted from trying to breathe, fighting through gagging spells, no food since I could not swallow properly, and unable to sleep for various reasons.
The second bout of coughing/retching/choking put me into tachycardia for several minutes and I only avoided a heart attack by getting immediate meds. Had I been at home it could have gone very differently. So I am endlessly grateful to the diligence of the nurses. At no time did they falter in their service, I was looked after like a treasured child.
This has been quite an odyssey so far, I’m hoping tomorrow sees more improvement and I can finally go home.
I won’t say I’ve been comfortable while here at the hospital, but they go to great lengths to minimize the distress and provide lots of comforts and distractions – which I welcome. High-speed fiber-optic service in my room made this post possible as well as keeping up with my job and keeping me in close touch with friends and family. Worlds better than the past.
When I was born in the late 50s, medicine was just starting to figure out myasthenia gravis, luckily, during my life, the huge strides made in immunology and molecular biology provided very effective treatment. The alternative is a slow descent into a gasping horror that ends in an iron lung breathing-assist machine.
I’ve come to see myself as an avatar of the Light, charged with protecting and spreading the Light. The thing I’ve realized is that bright Light casts very dark Shadows. As the Indigo Girls sang, Darkness has a hunger that’s insatiable and I could FEEL the Darkness swirling around me during the worst moments of the coughing fits when I felt like I was literally going to die. I thank the Light that shone down on me from all my family and friends in those moments. I also give thanks to the men and women that stand at that edge of the abyss of death, hauling people back by sheer force of will and effort – TRUE avatars of the Light.
May the Light shine on you all and protect you as it did me.