Sunday, September 25, 2016

Stanford MedicineX Moments - #MedXMoments

How to write a post that includes all of the wonderful, intense, special and enlightening moments that were a part of the Stanford MedicineX experience is a question I've been pondering for days.  As you'll soon see, I still don't have a good answer.  There is no way I can possibly include every person, encounter and presentation that touched me over those very special four days.  So I've decided I'm not really going to try, but it is important to share some of the highlights.

One thing that really impressed me about the MedX team is just how much care they took to understand all of the ePateint delegates accessibility needs. And even more impressive, are the length they went to meet our needs. They really do take the idea of Everyone Included  very seriously.

I probably should start with the flight out to San Francisco. Want to be left alone on a flight? Wear a face mask and carefully sanitize everything you may touch around your seat.

It is always interesting, the reaction you get when wearing a mask in public in the United States. When you have a compromised immune system, you do what you can to protect yourself, or you end up in the ER burning with fever and hoping you got there early enough to prevent a trip to the ICU.

Day 1 was the IDEO Design Challenge. I commented on that day earlier this week so won't spend much time on it now. One cool thing, for someone who spent 13 years in the Navy, was the chance to speak with Rear Admiral Lane.

Friday began bright and early with a nice breakfast on the lawn outside the Li Ka Shing Center at Stanford University.  Dr. Chu opened up the conference and we were off.

The main stage presentations and panels were livestreamed, and I hope recorded.  I would very much like to revisit some of what I experienced at the time, and to see presentations that were on at the same time as some of the breakout sessions and workshops I attended.

Here is Dr. Chu talking about precision medicine.

One of the most powerful presentations of the weekend was by a young man named Dillon.  Dillon has Autism and communicates by typing out his words either on the computer or with a letter board.

Early in life Dillon couldn't communicate in a way that we understood. Dillon's presentation about how he was treated when the doctors, and pretty much everyone except his parents, assumed that he did not comprehend what was going on around him was both heart breaking and inspiring. I really hope that his presentation shows up somewhere, it was the one that affected me most.

Here he is on the panel discussion following his presentation:


Another presentation that hit home on that first day was when Daniel Cosgrove spoke about invisible illnesses. This is just a very small part of what she shared with us:

I really could go on and on about the meaningful presentations and workshops I attended at MedX, but that would be one heck of a long post and I would still miss some that touched me personally. The conference was just that awesome.  If you would like to see more snippets of MedX presentations, you can find a few here.

Speaking of the presentations, yes Mom, I did wear my mask during the larger ones.

The presentations and workshops were great, but the most important part of my MedX experience was the people I met.  Most everyone I met was genuinely interested. They were interested in improving healthcare, the tech involved, the patient experience, or finding answers to the important questions that patients are asking.

I had the opportunity to spend some one on one time with the CEO of a high tech prosthetics company, talking about how to generate interest in developing a better, more efficient and  socially acceptable way to deliver supplemental oxygen. He gave me some great ideas that I have already utilized, and helped me dial in my pitch.  

I also met, for the first time ever, someone who has experienced the same loss due to their disease as I have.  At some point during the progression of my IPF, I kind of lost the ability to do really basic (at least to me) math in my head.  During my lung transplant workup I had a brain scan and talked with a Neurologist about why I may have lost that ability, and he did not have a good answer. I was hoping to get it back after the transplant, but so far no luck.  I just can't trust my numbers anymore.  Thank goodness for iPhone :) While describing this to someone, I found a kindred soul.  Someone who loved numbers and had lost them in the course of their disease.  We had the same tests and pretty much the exact same discussions with our medical teams. I hate that someone else shares this loss, but am glad to find validation that it's not just "all in my head'.

Then I met this guy (the one on the left)

Nick has a great beard, was wearing a digicam kilt, and pink socks with mustaches on them. I saw him during a break, and in passing mentioned that "I really like your kilt". Nick stopped what he was doing, gave me a smile, looked me in the eye and told me that I was awesome. That came at pretty much the perfect time. The side effects of my meds (reminds me I need to update that post) were starting to come on stronger and that little act of kindness by a stranger really helped settle things down. Nick gifted me a pair of pink socks and asked that when I wear them, and someone comments on them, to share the moment and tell them they are awesome.

There were quite a few people who made an impact on my weekend.  Sean, a director in a Canadian health care center who I met during the IDEO challenge, made it a point to check in and say hi throughout the weekend and always made me smile. John, a director at Inspire, and Sally, a VP at PatientsLikeMe, spent a lot of time with me throughout the weekend.  Those are both important, patient centered, online support groups, There were also the ePatient advisers who were an integral part of making me feel welcome and made sure I got to experience all that was MedX. Sarah, Emily, Meredith and the others worked hard throughout the weekend, not only being a part of MedX, but helping the ePatient delegates in many different ways.  Then there are the other ePatients. Each one an enthusiastic advocate for, and example of, empowered patients.  This is a long list and I'm not even going to get started putting down names in fear I would miss someone.  Well... I will mention my roomie Bill, I don't think the MedX team could have picked a better roommate for me if they tried.  

There were a couple of workshops/presentations that I didn't want to attend.  Those were the ones that dealt with end of life issues.  Been there, done that.  Chose my Hospice Care Team, planned my memorial (pot luck, BYOB, drink up my wine collection, and celebrate my life), and made what EOL plans I could.  I also spent our grandson's last few days at his side and watched him pull out his own feeding tube and remove all the leads when it came time to let go.  So EOL discussions are still a bit raw for me, even though I do have very strong opinions on health care in general may be failing us in this regard.

A couple session that I was actually scared to attend, but wanted to, were a talk and performance by Yoko Sen. Yoko's project was focused on the question "What is the last sound you wish to hear at the end of your life? I have plenty of assumptions about the sounds I might hear as I finish this life.  The sound of a ventilator being turned off, hospital alarms and sounds of my families grief are what I felt were likely to be my last.  Well... I did attend Yoko's presentation, and talked with her a couple of times after that. My thoughts became a part of her performance that closed out MedicineX, and I like to think that Peter was included in her art.  Here is a very small part of that performance.

This was one of the most moving pieces of art I have ever experienced, and I am often moved by art.  Another piece of #MedX that will stay with me forever.

There is so much more to tell, but this is it for today.  I have lots of "Oh I should of mentioned this" or "That was important, should have included it" moments in my mind.  But I've probably written enough for now.  If you're still reading, Thanks :)  and as Nick says "You're Awesome!"

Speaking of awesome...

I did make the TSA agent at the metal detector smile.

If you want to see more images from MedX, check out their Flicker albums. If interested, here is where you can find information  on MedicineX 2017

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