Dear hospitalist: Hello from a former patient
Dear hospitalists—How often do you hear from former patients? Earlier this year I sent an email to a hospitalist who cared for me in 2008 and 2009. He made a big impact on my life. I bet you have done the same for many of your patients.— Liz
To the best of my recollection the hamburger wasn't so bad.
Dear Dr. A,
My name is Liz and in 2008/2009 I was your patient.
I don’t know how often you get to follow patients outside of the hospital—or have them check in with you after 10 years—but over the last two years I have thought about you quite a bit and I want to remind you of our brief history and share with you how I am doing today.
In July 2008, at age 29, I was admitted to [HOSPITAL 1] after suffering a grand mal seizure. A CT revealed I had a mass in my brain, and I was transferred to [HOSPITAL 2] in Sacramento where I was admitted as your patient. After a nine-hour surgery we learned I had a grade II astrocytoma. (Spoiler alert: I am still alive.) In all, I had two craniotomies, was on oral chemotherapy for 24 months, re-learned to walk and balance, and eventually was able to manage my seizures with a combination of AED therapies.
Attached to this email is a PDF (below for web) I created from my medical record detailing a few of our emails back and forth in 2008-2009. What is not captured in our emails is that after my first brain surgery you learned I like TED Talks and you encouraged me to watch the talk by Dr. Jill Bolte Taylor about having a stroke. After my second brain surgery you found me reading a book about neuroplasticity in my hospital bed. Now, if you take a glance at our emails you’ll notice that you started encouraging me to read more books about neurology—you even suggested a few medical textbooks that sit on my shelves still today.
This is what it looks like when a clinician encourages a patient's curiosity.
One of my last emails to you, dated May 21, 2009, says,
“I just need to find a way to fuse my graphic design talents with my new-found interest in neurology…”
Today I work for Beth Israel Deaconess Medical Center on a research initiative called OpenNotes which has been studying and evaluating the effect of sharing clinical notes with patients, care partners, and clinicians, and works to disseminate research findings. As a “patient researcher” (this is becoming a real thing!) I was awarded funding by the Patient-Centered Outcomes Research Institute (PCORI) to form a first of its kind palliative/neuro-oncology action network. Additionally, I now serve on the board of directors of the National Brain Tumor Society.
Over the last year two years I have made over 90 presentations around the country about my work; highlights include presenting at the Society for Neuro-Oncology, the National Committee for Quality Assurance, and American Medical Informatics Association, and I did grand rounds at UC San Diego (best day ever!).
I am still living in Sacramento and get to work from home (though I travel quite a bit). I am happily married to the guy who was my super awesome boyfriend back at the time you met me. We have one cat.
My health insurance changed in 2017, and today I receive my care at UC Davis for primary care and UCSF for neuro-oncology. On my last visit to UCSF I arranged my meetings so that I was a research participant, a patient, and a principal investigator all in one day!
I was only your patient for a few days (over two different stints in the hospital), but your willingness to stay in touch during a crucial time changed my life forever. You recognized and encouraged my curiosity—which is rare, so many others in your position could have told me to stop asking so many questions.
These days in my work I do a lot of presentations about the importance of people having full access to their health information and their medical records. Inevitably a doctor raises a hand to tell me, “Not all patients are like you.” I usually respond by saying, “Well, not all doctors are like you.”
If not all patients are like me, then Dr. A, I would like to say not all doctors are like you—but we need more people like you in medicine. Thank you for being extraordinary.
With sincere gratitude,
Liz Salmi
P.S. At the bottom of my first discharge summary you wrote, “Liz, Best wishes on this journey!” It has been an incredible journey, indeed.
