14 -- Hope, At Last / HUG THE SKY

July 24-26, 2018

After Monday evening’s awful experiences, we had hoped to just sleep in.  The choking episode had really taken a lot out of both of us, physically, mentally, and emotionally.  We crawled into bed at 11:30 after returning home from the hospital and slept. 

That is, until the phone rang Tuesday at 7:00 am, waking us up. 

“This is Dr. S__.  Is Ms. Tarlton there?”

I didn’t know a Dr. S__, had not seen a Dr. S__.  
So David asks, “Excuse me, who are you with?” 

She identifies herself as a member of the hospital Neurology team.  She spoke quickly, informing me that my case was “too acute” for their practice, and they were releasing me as a patient.  She suggested that I might find a doctor at Duke, Emory, or MUSC-Charleston.  Oh, and your follow-up appointment with us has been cancelled. Good luck!  Buh-bye!

I’ve been “fired” as a patient, so it seems.

Honestly – I was relieved. I had not felt confident with their level of care or compassion.  But it really left me hanging, dealing with a serious Neurological condition and no neurologist to turn to.  

Dr. Marom, my PCP, was very upset about this turn of events.  He called us that evening, and we discussed our options.  He was already working toward getting an appointment for me at Duke since we had requested his help in that endeavor.  He had transferred them a ton of information and test results.  Now he was making more phone calls, hoping to get me in for an evaluation as quickly as possible. 

His hard work and persistence paid off.  Wednesday morning, I received a phone call from someone at Duke Neurological clinic.   Could I come in for an evaluation at 2 pm on Thursday?  YOU BET I COULD.

We spent the rest of Wednesday in preparation for the trip.  A new patient packet was emailed to me, with several pages of information to fill out.  I worked on that while David organized and compiled notes and information from my hospital stays.  Aliza took care of household chores for us and got a crash course in “where stuff is” in our house.  We also needed to pack up for the trip.  It is a 4-hour drive one way from our home to Durham, NC.  The appointment would be long; depending upon how many other tests they would perform, we may need to spend the night after the appointment.  That meant an overnight suitcase.  Then there was packing enough oxygen to make the round trip.  Lots of preparation, lots of anticipation.

Thursday morning, we left at 8 am.  That gave us plenty of time, in case we hit traffic snags in Charlotte (always traffic snags in Charlotte!).  We found the Medical Center, ate some lunch, and then checked in for my appointment with Dr. Shruti Raja.

I was called back at 2 pm sharp.  Dr. Raja introduced herself when she entered the room, and started her examination.  She asked lots of questions; she referred to the notes Dr. Marom had sent.  She did a very thorough neurological examination. She looked me in the eyes, and LISTENED to what I had to say, and to what David had to say as well.  She answered our questions – and provided reasons for the answers she gave.  She appreciated that we had done enough research to ask questions that were relevant.  She explained some of the neurological tests – and suddenly some things made sense to me.   For example, one of the main tests is for me to follow her finger with my eyes only.  (I first had this test with Dr. Marom.  That was when I realized something was really going crazy with my eyes and it wasn’t just a blood sugar thing.)  Looking straight ahead, I’m fine.  But when I try to see to the peripheral edges, my eye muscles fail to cooperate and just can’t follow at all.  Dr. Raja noted that my right eye would go way off course, and was much weaker than the left.  Realizing my right periphery was worse than the left, it dawned on me that I had sensed that already, and had been making adjustments to deal with it – I’d wear the eye patch more on the right than on the left, for example.  

She then began outlining a course of treatment for me.  I would continue with the Mestinon and Prednisone for now.  She prescribed an immunosuppressant medication called CellCept for me.  It is used primarily for people who have had organ transplants, to prevent rejection of the new organ. For me, it will prevent my immune system from rejecting and attacking itself.   It will pretty much knock my immune system out, especially when I first begin taking it. The ultimate goal is to be able to come off of the Prednisone and Mestinon, remaining on CellCept only.  And hopefully – return to a more normal life again.

She ordered some further blood tests for things like Hepatitis B and C, and Tuberculosis.  She also invited me to participate in research for MG, by donating a few extra vials of blood.  I am always interested in trying to help with research, so I agreed.  All total, I left 12 vials of blood at Duke that day.

The examination took three full hours.  We had entered the room afraid, frustrated, uncertain, and discouraged.  Dr. Raja’s expertise and attention filled us with hope.  It was the first really GREAT day we’d had in weeks.  We left, elated and full of HOPE – she mapped out a plan for my recovery, and pointed us in the right direction.

We felt so energized, we decided to return back home rather than stay the night in Durham.  We stopped at Wendy’s for dinner – I felt like eating French fries and a chocolate Frosty.  I suddenly had an appetite and also ate the meat, bacon, and cheese from a burger (couldn’t manage the bread), and a chicken nugget.  I think that’s the most food I’ve eaten at one time in a couple of months.  On the way home, we called my parents and told them we had some good news, for a change.  That really lifted their spirits as well. 

It was the most encouraging day we’d had since this whole thing started.  I wanted to hug the sky.

***   ***   ***   ***   *** 

Untethered Time Travel:  HUG THE SKY

Early summer, 2009.  I am 52 years old.

We are in Ghana, West Africa, along with friends Davi Trotti and Becky Cheek.  

This is my 6^th trip to Ghana; I have many close friends and people I consider family there. 

We work through Christ Harvests the Nations Ministry to place water purification systems in remote villages.  On this day, we are in a village called Labo Labo, training some young men to manage the system once we leave. 

 We are celebrating!  It is a joyful thing to help people get clean water!  David always does an impromptu celebratory “Water Dance” when we finish – and the kids in the village giggle and join in.  

Everyone is singing and clapping and laughing, the drums are beating a rhythm.  (No matter where I am, if I listen, closely, I will hear the rhythm of those drums in my own heartbeat.)

The homes are made of red clay with palm roofs.  No electricity.  Ladies wearing brightly colored dresses pound fufu  (boiled cassava root) for the evening meal.  Often, little babies are tied to their mothers’ backs and they are dozing as mom pounds in rhythm, turning the boiled vegetable into a doughy lump.  Small goats roam here and there, nibbling at weeds.

It is hot and humid. We all glisten with sweat.  Moisture drips into my eyes, rolls down my back.  I have my hair tied back with a bandana that I soak with water to keep myself cooler.  

I love the smiles I see in Ghana.  They’re so genuine.  

Beautiful people, beautiful hearts.

Now our work in Labo Labo is done.  Maybe I can return one day for a visit.  We are walking down the dusty red road to board the truck taking us back to our home base in Tema. 

But I feel so excited, so joyful, so GOOD.  So welcome here.  I feel the closeness of God, so near I could lift my arms and feel His presence.  I raise my arms upward.  David, walking behind me, asks, “What are you doing?”

I smile and say, “See?  I can hug the sky!” 

And that is exactly what I do.