10 -- Hospital, Round 2 / CORK

July 15-20

Sunday morning.  We were supposed to be headed to the beach for a week.  We’d been planning it for months.  Normally, I would have already had everything packed but I hadn’t had the energy or ability to even collect my thoughts about it.

Just as well. I wound up in an ambulance, going back to the hospital in full Myasthenic Crisis. 

I remember the paramedic reading up on MG as we rode.  He continually monitored me, spoke soothingly to me.  I squeezed the pump respirator, trying to force enough air into my lungs to breathe.  By the time we arrived at the hospital, I was too exhausted to care much. 

I don’t remember much about Sunday once I was taken into the ER.  I vaguely remember a chest x-ray.  David said I was nauseous but I don’t remember throwing up.  He also mentioned that the resident doctor I had been assigned in my previous visit checked on me but I have no recollection of seeing her.  

Eventually I was put in a small room in the Emergency Department.  I had the usual trappings tying me to the bed:  blood pressure monitor, IV line, clip on my finger to measure blood oxygen levels.  I also had a nose cannula so I could have oxygen at all times.  By the evening, I was beginning to come around a bit.  At night, I was put on a BiPap machine – which was the most wonderful invention EVER.  I at last was able to BREATHE better.

I had several tests run, including a swallow study.  That was really interesting!  I was given a variety of things to eat that had barium mixed in:  pudding, graham crackers, applesauce, a drink.  As I ate and swallowed, I could see the “action” in my throat via an x-ray video.  I could see where I was having some “hang-ups” as I swallowed the food.  They gave me some swallow exercises – yes, that is a real thing, and it is harder than you’d believe -- plus you make some really crazy faces while you try to do them!

Eventually, I was moved to a room on the 9^th floor. 

I was seen by a team of Neurology residents led by a doctor, nearly every day.  I was also visited occasionally by a Pulmonology team.  At times, I felt like a ping-pong ball being batted between the two.  Neurology kept saying my breathing issues were due to a pulmonology problem;  the Pulmonology team said the breathing crisis was caused by MG, which was a neurological issue.   I liked the lead (teaching) doctor who led the Neurology group each day because she genuinely wanted to answer my questions.  Yet the fact that I had a relatively rare disease made me feel more like a circus side show exhibit.

To be honest, I was not exactly confident with the team of doctors visiting me.  Reviews of the practice online were dismal at best, and nowhere on their website mentioned the treatment of Myasthenia Gravis.  David and I began researching other neurologists, and asked Dr. Marom if he would begin a referral to Duke University Medical Center’s Neurology clinic for me. 

The Neuro team informed me that I would have a 5-session IVIG drip.  This is an intravenous immunoglobulin treatment that gives the patient antibodies they can’t make on their own.  I had very mild side effects, just sort of felt achy like I might be coming down with the flu.  Since I tolerated it so well, they increased the drips so I would complete the regimen in 4 sessions. 

I was also prescribed prednisone.   Oh boy.  That stuff makes me want to eat the paint off the walls.  But if it will help me breathe again…. I’ll just have to buy bigger clothes, I guess!

David needed a break. He had been intensely focused on me for weeks, attending to my every need.   I insisted he take a breather and go to the beach, just for a day, to meet our friends there.   Daughter Melody arrived to spend Wednesday at the hospital with me.  She was armed with questions, took great notes, and was a HUGE help for us that day.  She opened a line of communication with my Pulmonologist Dr. Mark Mayson and his assistant Kim to help me with some issues that no one in the hospital seemed willing or able to work through.

My oxygen level dropped every time I exerted any efforts.  Just moving from the bed to the toilet caused a significant drop.  But on the plus side, I experienced significant improvement when I used the BiPap machine.  It was obvious that I needed oxygen at all times, and that I would absolutely need a BiPap machine at home.

I was told I would be released to go home once I finished my last IVIG treatment on Thursday.  That would be around 9:30 pm.  Kind of late to be released, so they agreed I would be released Friday morning.  We asked about home oxygen and Bipap – well, they could get me set up with oxygen.  But I would have to have a sleep study in order to get a BiPap.  That would take time.  Couldn’t I have a sleep study while I was already at the hospital?  Oh no.  It didn’t work that way.

Actually – we knew through our research that patients with MG do not have to have a sleep study in order to get a BiPap.  And I knew my pulmonologist Dr. Mayson was on our side. 

David spent Thursday night in the hospital with me.  That night, we were supplied with some oxygen and a wheelchair to take home with us.  Friday morning, a young Neurological resident arrived to process my release.  He arrived with an announcement:  the last blood test results were in.  I tested positive for MuSK-Associated Myasthenia Gravis.  At last, a definitive positive  diagnosis!  Oh, and by the way, he reminded me -- don’t forget you have a follow-up appointment with the Neurology team doctors on Wednesday morning.  

  

Once we signed all of the papers, I could leave the hospital.  We drove straight to Dr. Mayson’s office.  He was right on top of things.  I took a pulmonary function test in his office – my lung capacity was at 30%.  I’ve had YEARS of 100% PFT results in his records; he had helped me keep my asthma under control.  By the time we left his office, he and Kim had made all the arrangements to have a BiPap machine delivered to my home that afternoon.  No sleep study necessary!

 

I am very blessed to have two great doctors on my side at this point:  my primary care physician Dr. Eric Marom, and my pulmonologist Dr. Mark Mayson. 

The equipment was delivered as promised that evening.   I slept 10 straight hours that night, nestled comfortably between David and my brand new Trilogy BiPap machine.  It was the best night’s sleep I’d had in over a month.

It was good to be home again.  I felt like I was finally beginning to bounce back from this.  Maybe the roller coaster ride was ending.

Or....maybe not....

***   ***   ***   ***   *** 

Untethered Time Travel:  CORK

I am 50 years old and David and I are on a cruise to celebrate our birthdays.  It is 2006.  We are snorkeling in the Caribbean.  The sea is blue and inviting. David dives deep and sees some colorful large fish on a coral ledge.  He surfaces and says, “You need to see this, come on!”  

I laugh and tell him I can’t dive that deep.  He is perplexed.  “What do you mean, you can’t dive that deep?  You’re a great swimmer.”

Yes.  I am a great swimmer.  But I float like my bones are hollow.  I can dive into a pool from a board and I MIGHT make it to the bottom, but I’m going to pop back up quickly.  Just like a cork. 

David is exasperated.  He really wants to share the sight of those gorgeous fish.  He cannot believe that someone could just stand still upright in the water and float.  (Yes, I can do that.)

He swims over to me.  I smile inwardly because I already know how this is going to end.  He thinks I am treading water to stay afloat, so he wraps his arms and legs around me to show me that I could, indeed, submerge. 

It doesn’t happen.  

He’s all wrapped around me, my arms and legs are not moving.  

My buoyancy overcomes his additional weight.  He is incredulous. 

We BOTH bob like a cork in the Caribbean Sea, laughing in the sunshine, floating gently on the waves.