I had crazy week last week.
On Monday, I went to NYC for the day for work, and was overcome by a strange dizzy feeling. Walls spinning; hard to concentrate; nauseous. I thought — maybe I’m just dehydrated. I took a rest during the middle of the day; I drank a lot of fluids. I made it back to Boston that evening — barely — and went straight to bed, assuming all would be clear the next morning.
When I woke up, the walls were still spinning, just as they had been. I started googling. Now — it’s important to note that I don’t have a standard health profile — 5 years ago, right after our son was born, I discovered that I had several large blood clots, in my intestines and in my head, and I’ve been seeing hematologists, neurologists, and rheumatologists, and have been on blood thinners, ever since. As you can imagine, the intersection of “dizziness” and “blood clots” is not a good one.
So I headed straight to the ER Tuesday morning, and ended up being scanned, tested, and admitted overnight. Turns out I did not have a stroke, but rather I have Vertigo caused by an enflamed cranial nerve (likely due to a virus of some kind). Vertigo is a really strange thing: first, it’s amazing how much we take for granted our brain/body’s ability to understand and interact with the space around us; when that stops working, it’s very distressing. And second, it’s (perhaps even more) amazing how well the brain can adjust, adapt, and re-learn, when certain things stop working the way they had been — I’ve been doing PT to re-train my brain, eyes and ears to understand what’s moving and what’s not moving, and where I am — and it’s been surprisingly effective.
But that’s not the point of this story. The point of this story is about how much effort, charm, and determination it takes to get effective medical care — even in the best case scenario with excellent health insurance, great hospitals, and top doctors.
One of the toughest things about last week was getting all of the doctors on the same page with one another. I’ve got a PCP, a rheumatologist that I used to see in NYC, a history of cat scans and MRIs (from NYC and Boston), a hematologist in Boston — and now as of last week, a Neurology team in Boston following my case.
All of these doctors — each of whom knows a piece of my story and has expertise to offer — do not have a way to talk to each other, and their method of sharing information is outdated at best.
The result of this situation is a mad scramble. Trying to get record requests initiated. Trying to compare new images to old images. Trying to get the specialists to weigh in with each other or at least communicate at all. Trying to figure out where the PCP is. Waiting on hold. Leaving messages for doctors that don’t get returned. Being scheduled for new cat scans and MRIs that may or may not be necessary — if only all of the doctors could communicate with one another, and work off of the same set of information.
For instance, the day after I was discharged from the hospital — and we headed to Cape Cod for what remained of our attempted family vacation — the Neurologist in Boston called and said they noticed something new on the cat scan from two days prior — and I needed to come back in for another scan. That meant a 4 hour drive, finding someone to watch the kids (luckily both sets of grandparents were with us), another night away, and another day worrying about what could be. And it’s altogether likely that better communication among doctors — and easier use of past records — would have made this unnecessary.
Luckily for me, I have a secret weapon. My wife. When it comes to medical issues, she has been through a lot — in particular, a decade of dealing with Chron’s disease and Thyroid Cancer. She has learned — the hard way — what it takes to get through the confusion, uncertainty, bureaucracy, under-communication and fear of having a complex medical situation. She know that you not only need to get connected with the right care at the right time, but you have to be a quarterback, pitbull, and snake-charmer at the same time to get things to happen.
In her words, you need to be the sweetest pitbull.
Never ever go away or let anyone off the hook, while at the same time, get everyone to like you and care about you.
My attitude is a bit different — I try to avoid being a burden, and tend to assume that people will do their jobs correctly if you let them. I leave messages.
Frannie’s approach is different. On Thursday when we went back for my additional cat scan, we showed up in person at the Hematology unit and the Neuro unit — unannounced; no appointment. We tried to make friends with the receptionist (critical). For a moment, it seemed like she would brush us off, but then she said “well, let me call the head nurse and see if she can come talk to you.” Bingo.
The head nurse (an angel if there ever was one) came out and saw us. Carved out a few minutes to talk. Mid-sentence, as I was explaining my situation, she ducked out of the room and came back with record requests forms for NYC. With her other hand, she dialed in the scheduler for the next possible appointment and got me set up. With her other hand, she took down the Neurologist’s information so she could coordinate with him. With her other hand, she had NYPH records department on the phone. With her other hand, she scribbled down her direct line, her pager number, and the Hematologists cell phone number. She had a lot of hands and she was using them all at once. Because we were sitting there.
When we were done I gave her a huge hug and actually cried a little. The difference between having a person who knows you, sees you, and can move the gears of medicine for you — and a person at the end of a phone line or email — is astounding.
And I would never have gotten there were it not for the sweetest pitbull gnawing and smiling our way in.
I guess the point of this story is that it shows me how broken the medical system is. Even in the best case, there is such a lack of communication, coordination and information sharing. Data is everywhere and nowhere. Decisions are slower and harder to make than they should be. Expensive diagnostics are over-used. Every patient needs their own sweet pitbull to help pry the doors open and get the system to pay attention them and care about them.
Thinking about this in terms of apps and data — it showed me, crystal clear, that there’s got to be a better way to do medical collaboration. What I wanted, throughout all of this, was a simple private chat room for me and my doctors — all of them — that provided easy access to my history of records, diagnostics, and care providers, across locations and hospital networks. A place that let me — and them — ask questions and get answers, and keep everything in one place that everyone could work from. Of course, there are untold barriers to this vision: insurance, risk/liability, data security. But it seems obvious to me that that’s the future we should be shooting for.
In the meantime, we can simply hope to recruit the sweetest pitbulls to have our backs. I know I am super thankful to have mine.