Straight From my Office to Yours: STANFORD RECAP (the blonde is my admin.)

officeMy husband travels often for business and accrues lots of points and miles.  Consequently, this means I’m on my own often but it also means that I have the opportunity to fly to and stay in nice places like Stanford!  Truth be told, I stayed with family friends who couldn’t have been more accommodating.  I was feeling great throughout the two day trip and I wondered if they thought I was crazy.  This is the girl that’s sick??  Wouldn’t be the first time.  Here I am bouncing all over the place, wishing I could run in the San Francisco air but knowing better.

I took an uber to the medical complex adjacent to the hospital earl Friday morning (early as in my appointment was at 1 and I got there before 12).  I entered the center for Infectious Disease and then up to a separate set of offices specifically for Chronic Fatigue.  I still prefer the term ME but will call it CFS if it gets me better.  I’ll call it WTFT if it helps even modestly.

The receptionists were very friendly and it was quite reassuring to know they were expecting me.  Can you imagine?  Colette who?  I was ready to jump into my gown and perform all sorts of tricks and endeavors but I was led, fully clothed, into a standard-issue medical office.    That was fine!  I have so much experience with this and, like I’d said, I felt good that day so I didn’t have to careen toward the examining table to take a quick nappy.

After a routine vitals check and about 15 minutes, Dr. Hector Bonilla breezed in.  He was young, jovial, frenetic, crazy smart and kind.  Kind is so important.  We talked for about an hour during which time we were interrupted at least twice.  Apparently, there had been a mix-up in the schedule and Dr. Bonilla had been ill-informed.  He was seeing me but was supposed to be seeing someone else that had been waiting longer.  I offered to wait but he insisted that we’d already begun so we would just continue with the appointment.

He talked fast.  I talk(ed) fast.  A great deal of information was exchanged  with passion.  We may as well have been high-fiving.  I told him about my glucose observation and he looked up, smiling brightly and said, “You’re on to something.”  I  get an A+!!!  We never did get back to that.  There was just too much to cover and I felt rushed.  I don’t think this is his fault at all.  He turned the computer monitor toward me to show me how many appointments and emails he had for that day alone.  But here’s the best part (aside from the possible treatment, of course).  I showed him a picture about how grotesquely my face becomes swollen.  Was this part of ME or another anomaly that made me extra special?  Reaching into his lab coat pocket, he pulls up, within seconds a photo of a woman face (normal) and then the same woman with swollen, distorted face, explaining that this is common with ME.

First of all, he reconfirmed I had ME.  I have every hallmark symptom.  This was reassuring as some of the symptoms–like the face thing- I thought would remain idiopathic anomalies specific to only me!   Here is a link to the whole long list of symptoms:

http://www.shoutoutaboutme.com/symptoms/checklist-of-mecfs-symptoms/

Dr. Bonilla spoke intermediate English, certainly better than my Spanish.  He mentioned cytokines regularly  (cyto-cell, kine-movment–the messenger cells that tell the T cells to go to battle and they get WAY too excited and go to WAR).  Finally, he suggested that next time I do not rush my trip–that this type of jet-setting is no life-style for me.  He stressed that I MUST AVOID “CRASHES” AT ALL COSTS.  I’d been referring to periods of illness as “flares” but he uses the more apt term “crash.” Finally, he said…that if I can avoid crashes and continue with the new medicines prescribed that I MAY ONE DAY BE ALL BETTER.  I’ve been around too long to become unrealistically optimistic but it certainly instilled some hope.

He put me on Valcyte (titrating gradually and discontinuing Valtrex), 4 mg Naltrexone (I’d been on this before with Lapp but then my primary would not agree to prescribe it), Turmeric with Meriva (500 mg) and CoQ10 (400mg).  Additionally, he suggested eating dark chocolate daily (epikitan and flavonoids) and following a Mediterranean diet (olive oil, nuts, fruits, vegetables, fish, etc.).  Yum, right?!

We nearly hugged and I left feeling like I was on an episode of Getting My Life Back (if that is not already a show, it should be).

I flew home, practically giddy, woke up the next morning and crashed.  I called CVS for my prescription and they had nothing.  The next three days were spent with me trying to get in touch with someone at Stanford and then CVS and then Stanford.  The only difference is that I could’ve walked to CVS.  Then there was a problem with the pharmacist being unable to understand the predominantly Spanish-speaking Stanford assistant.  When I translated for the pharmacist, he told me the Valcyte would be $3,000.00.  For a month’s supply.  I was crestfallen; deeply.  It takes a lot to knock me down but I was down.  No one at Stanford was calling me back and they were the best.  Each time I called, I was place on an interminable hold, only to speak to a different person and repeat myself.   So much of CFS research happens right there with the historically stalwart NIH.  So much so, that the program is called the Stanford ME/Initiative.  I needed this to work.  I need  this to work.

I was sobbing when my twelve year old daughter came home from school.  It was the first time she had ever seen me really cry.  I was honest and told her I was sick of being sick and then when I was assuring her that everything would be ok, the phone rang.  It was someone from Stanford calling to—apologize and make it right.  I was trying not to cry on the phone but I just lost it.  This woman, a department manager, was so sincere in her apology that her voice trembled.  Something happened; the ball dropped and she continued to apologize.  By the end of the call, I felt badly for her!  She gave me her direct line and insisted that I work directly with she and Dr. Bonilla for the course of my treatment.

Those three days after my trip SUCKED but it is so rare to see anyone, let alone a medical professional, humble themselves and show genuine humanness and compassion.  I will take a mistake, an admission, a heartfelt apology  and the willingness to make it right over a bored and condescending lab report reader, any day.

 

 

 

3 thoughts on “Straight From my Office to Yours: STANFORD RECAP (the blonde is my admin.)”

  1. So well written and such a heartbreak that it’s taken so long to get into the right program with doctors who understand . And the fact that you had to go to California to have everything confirmed . But you my dear have what it takes to get it done and that’s why you are who you are . I’m so proud of you .
    Love Mom

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      1. I don’t know. I haven’t written bc I still have been crashing. I think I am improving. I will blog about what’s going on this weekend-if I’m well;). I’m always trying to squeeze in as much as possible as a mom, wife and friend and when I’m feeling well I just want to DO! Thank you for asking:)

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