Being seen as a human being

I was just a year or two out of college and I was not getting anywhere in finding relief for Ulcerative Colitis. The GI doctor I had been going to just gave me the same story every time, I never felt like I was being heard. He was not even open to trying different or newly approved treatments. I ended up switching to our local teaching hospital when I was running out of mental and physical energy to keep fighting. They were able to get me into a last minute appointment. During that appointment, we went through my disease and medication history and all of the normal things, and then the doctor looked at me and told me "You deserve to live your life." and I cried. I had never heard anyone, let alone a physician, recognize that. I had been so wrapped up in the daily task of managing symptoms and trying to manage life, that I had barely recognized it myself. It was the first time that a doctor had ever recognized that I was a whole person, not just a vessel of symptoms.

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Being seen as a human made me feel SO much more validated, and also I was able to trust that I was in much better hands with this team. And it was true, they worked with me to find the treatment that I am on now, and I've been in remission for years. It has made all the difference.

Everything is going to be fine.

I remember the whispering sounds in the surgical suite. I remember looking down and saying “everything is going to be fine.” I knew if I could just get back out on to the race course everything would be fine. 

Everything wasn’t going to be fine. I woke up with a traumatic brain injury that made my bipolar disorder widely volatile. 

Everything wasn’t going to be fine. A year later, I sought admission to a hospital with profound depression & catatonia. That was a fateful admission as I met psychiatrist who knew how to reach me when others couldn’t. He had kind words.

My psychiatrist told me that we would use all of modern medicine, mostly I remember him telling me that I was pure, perfect & whole. I didn’t know what those words meant, but I felt them deep in my soul. It reminded me that my soul was a vast part of a whole. It reminded me that I wasn’t alone. That loving reverence for me as a whole person made all the difference. I wasn’t afraid.

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Unfortunately, I wasn’t responding either. My doctor told me that I was protecting my heart from what was happening to me. Five weeks later I agreed to a course of ECT treatments, that luckily worked for me when all else failed. I could move on with my life.

Cared for the whole of me

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In college, I had the university’s PCP take care of all my diabetic needs. She was always encouraging me to take better care of myself and maintain a stable HbA1c. I talked about it but struggled to reach my goals. After two years of trying, I finally hit my goal and she called me after she got my lab results, cheering for me and was super happy about it. I’ve never seen anyone be so enthusiastic about my results and it truly stuck with me. That doctor truly cared over my well being.

The second was during my high risk pregnancy with my daughter. I was referred to a perinatologist to monitor my insulin pump and dosages. He immediately ordered a continuous glucose monitor which truly changed the course of my diabetic management. And despite all the worries and the panic of the occassional high blood sugars during pregnancy, he kept me calm. His guidance and instructions continue to help me maintain my health. I’ve truly learned a lot in the nine months under his care. When baby was born, I was truly sad that I don’t get to work with this doctor anymore.

The view looks bad from both sides

The following story was submitted by a doctor who found himself in a caregiving role for his parents.

I've been on vacation to visit my parents (both 86).

Got a call from mom on the way that my dad got admitted for a GI (gastrointestinal, or somewhere between your mouth and your intestines) bleed. Met him at the hospital. The facility is large, elegant, and spotless. Employees all well dressed and polite. All the paperwork is legible and voluminous:  but it isn't helpful at all.

Later that night, my mom came by ambulance to the same large hospital with an ACS (acute coronary syndrome, otherwise known as a heart issue). She hasn't been a patient since her last child was born. Both are fine now and home.  

Both discharged after very slow care, rarely saw a doctor, and waiting 4 hours for a "discharge order". My dad almost signed out AMA because they wouldn't let him leave the floor to visit my the same hospital.

Both had more than 4 significant medication errors with no medication reconciliation. (This is when a clinician reviews and confirms all your medications to make sure they know what you are on and can look for possible problems or likely problems.) We did hours of "dining room table medication reconciliation" yesterday. No one shared tests results until we asked.

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We followed up with my dad's PCP (a very nice guy in a run down, rural, private office.  There, we found "kind care". Here is the posted "opioid policy":  shorter and much more sensible than in our practice, I think....and more clear. One could argue it is not "kind care" but at least it is clear.

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Nothing is more helpful in seeing how broken our system is than being a patient or being with a patient.

Reading the book "Why We Revolt", by Victor Montori, made me realize I could add a couple chapters. Medical care is in very sad repair.