More about Jess Jacobs, who died on Saturday–also known as #UnicornJess. (That link will take you to the twitter memorial on Sunday night, but also check out remembrances from Ted Eytan & Carly Medosch). Today I’m re-running a beautiful, and very personal piece (on Medium) from her friend Whitney Bowman-Zatzkin who was a key patient advocate for Jess in Washington DC–Matthew Holt
I attended a walking tour once where the guide was going on about Von Gogh’s quest to paint yellow in the most yellowy of yellow ways. Even NIHarticlestalk about it. Theories abound.
As we walked, I gained an appreciation for the lengths this guy went to on his quest for a single portrait of yellowy yellowness. I remember the guide saying something like:
“Van Gogh sought his whole career to paint in a way that demonstrated how yellow made him feel.”
The tour was years ago but that line stuck with me. Has anything ever trapped you like that? Like a quest to craft a brushstroke for how something made you feel?
My treasured friend Jess Jacobs died this weekend. She flooded my life with laughter and jokes, expanding what I knew in what it is to love a friend in the very best of ways.
Jess and I met in a classroom at Georgetown where she swiftly passed out in front of me when I returned for the final pitches of my first-ever code-a-thon. Later she’d tell of waking up to a blur of people and a certain bow tie being in focus.
Shortly thereafter, she fainted in front of me again and I soon learned how to trust a new friend and be there for her more than I ever had before. That pattern continued throughout my whole friendship with Jess. She gifted me a new definition of trust and capability.
Some of the scariest words I’ve ever known in health care existed in Jess’ medical profile, yet she was always the outlier redefining what it meant to have those diagnoses.Continue reading…
This has been a very sad weekend for me personally, the wider health care community and for anyone who knew Jess Jacobs, who died on Saturday. She was only 29 years old, and was smart, funny, enthusiastic, and brave well beyond her years. She suffered from two very rare diseases, but was also working to push health policy forward at ONC, FDA and Aetna, and she really knew her stuff. Jess was a marvel and a rarity in more ways than one. She was #UnicornJess. (That link will take you to the twitter memorial on Sunday night, but also check out remembrances from Ted Eytan & Carly Medosch). I’m ashamed that I never thought to offer this to her while it was happening, but now I’m going to run several of her pieces from her site about her “care” experience on THCB in the coming days, starting with this one from 2015. (Hospital X is I believe Georgetown Univ Med Center but she went through every hospital in DC and there were no good ones. She wouldn’t name them beause she expected to be back, but that’s not an issue now). And while my thoughts are with Jess family and friends, I’m going to redouble my efforts to change what passes for care in today’s system–Matthew Holt
I’ve now spent two consecutive Memorial Day weekends at Hospital X with intractable vomiting. Last year I checked myself in. This year, I took the scenic route via three weeks of hard time at Hospital A followed by a transfer to Hospital X. When the nurse blindsided me with the transfer order to Hospital X after COB on a Friday night, I assumed it was a clerical error. The plan that’d been laid out by my primary hospitalist team was to transfer me to a hospital which specializes in CVS. When my (new) weekend hospitalist had run by for +/- 90 seconds Friday morning, he’d said I’d be transferred Monday as planned.
But here I was, 8 hours later, hysterically crying over the prospect of being sent back to the hell which is Hospital X. I finally got nursing to call the hospitalist so I could plead with him to change the order. I let him know that Hospital X’s ‘care’ is better characterized as psychological and physical torture. I firmly believe I am better off facedown in a ditch, drowning in an inch of muddy water, than under the care of Hospital X. The hospitalist attempted to contain his exasperation while insisting that ditches are a far worse fate than Hospital X and I am lucky he had managed to secure a transfer to a new cyclic vomiting specialist there. I’ve now been admitted for 8 days at Hospital X and haven’t seen anyone from the GI department, let alone a CVS specialist. I have, however, been told by hospital police that they would cuff me and take me to jail for taking photos of them ransacking my belongings following a syncopal episode. This egregious treatment doesn’t surprise me – indeed, last month I wrote Hospital X a letter of complaint, copied below, which shared how their lack humanity has broken my spirit.
Caught by the Scruff of my Neck
Manometry w/ RSV
Mistaking Hand Sanitizer for Mouth Wash
Central Line Infection
50 Needle Sticks
Dear Dr. X-
Thank you for your willingness to contact me, the patient in question, regarding my experience with Hospital X. Apologies for the lapse in time, your email disappeared to the bottom of my inbox whenI was readmitted to Hospital A with a central line infection. My choice to return to the facility which gave me the infection, instead of coming to Hospital X, is a good indication of the disdain with which I hold your hospital with.
When Dr. Y visited me during a two-week stay in July, I thought Hospital X had hit rock bottom. During this stay my roommate’s bloody vomit sat clogged in the sink for three days before someone came to plunge it. Sanitary conditions pale in comparison to the forced separation from my friend and advocate who is a Medical Student with your facility. While I fully understand the need to keep relationships between students and patients professional to protect patient privacy/health and their education… Over the years my friend has come to know my health likely better than I do… and long ago I legally gave them permission to access my medical information [so any professional/educational distance is null].
However, that isn’t the stay which brings me to tears when I answer people asking ‘What is the worst healthcare experience of your life?’ – that honor belongs to the 48 hours I spent housed in an on-call room last November.
November’s stay made me appreciate my cellphone in ways that you should not have to appreciate your phone while inpatient at a hospital. Here my phone wasn’t my connection to the outside world – it was how I connected the dots within. It enabled me to contact five of my physicians, all of whom are attending physicians at your institution, when my resident was unable to do so. When the resident insinuated I had not established care with hematology, I was able to call the hematology department and connect my hematologist to the resident in under 15 minutes. At the time of admission, I had given this resident a typed list of my specialists which included the same contact information I used successfully; as such I find it difficult to believe the resident attempted to verify I was an existing patient.Continue reading…