My first appointment with my new primary care doctor, Dr. Horf was just about a week and a half before my 26th birthday, on July 2nd. Jeff’s 41st birthday was nine days later on July 11th. Jeff was my best friend in the entire world. I was secretly in love with him and he was secretly in love with me, but we were each terrified to tell each other the truth and upset the balance of our friendship even though it was obvious to everyone else around us that we were already like an old married couple.
We were planning on celebrating together at a lake nearby called Onota lake. We had invited Nan and Jackie, my two PCAs (personal care attendants). Jackie’s boyfriend Jay, and his dog Bruno, and Greg, the lawyer I wrote briefs for and studied Jewish texts with, and some of our missionary friends that visited us at Side By Side routinely and took us out to their farm or on other outings. To his credit, Jeff was trying really hard to be nice to Greg, even though I knew he couldn’t stand the man because he was afraid that Greg was creepy and after more than just intellectual company. It didn’t matter how many times I reassured Jeff that Greg was happily married and just wanted a study partner, he would not be soothed around this issue. Luckily for Jeff, Greg moved to Arizona several months later and our only communication became shooting each other a quick text every once in a while.
All I had to do was meet my new primary care doctor and get through that appointment then on July 3rd we would be celebrating birthdays and then celebrating Independence day the following day back with everyone at Side By Side Assisted Living. The place Jeff and I currently called home.
It seemed simple and straightforward enough, but every time I thought about the upcoming appointment with my new doctor, my whole body got hot and cold at the same time. My heart began thudding really heavily and quickly, resembling a running linebacker, and the air got too thick to breathe, whether I was using oxygen at the moment or not.
It was pretty much understandable, after all, my original primary care provider (my nurse practitioner Karen that had been caring for me for the last seven months, since I left Hillcrest Commons) had just tried to ship me off to a nursing home because she thought I went in and out of the hospital and emergency room too often. When I wouldn’t go with that plan, she pawned me off on her supervising doctor who made plans that would have killed me. When I didn’t go along with those lethal plans either, he fired me as a patient from the whole office. Now I was going to meet a totally new primary care doctor with a chart that said that I refused to listen to recommendations by my last two doctors and who knows what else. Plus who knows what my paperwork was already in my chart from Hillcrest Commons?
The ride down to North Adams the day of my appointment was tense.
“You seem quiet,” Rich commented as we bounced up and down in the chairvan on the way down the road. The liftgate (part of the van that lowered down and allowed my wheelchair and I to get on and off the van) was making clattering noises as the wind hit it going fifty-five miles an hour plummeting down the road. The engine certainly was never very quiet either. Plus, the air conditioner was roaring away as well.
Despite all of the typical chair van noise, I normally chatted away with the chair van drivers on the way to my appointments, but this time I was too nervous to even talk. I kept thinking back to my last appointment with my old primary care doctor’s office. Karen’s supervising doctor, Dr. Hammet, had insisted that I was suffering from polypharmacy and that I was going to die in the next couple of years unless we drastically cut down on the number of medications that I was on.
His comments had not stopped cycling through my head. Was I really on too many meds? Was I really in danger of dying from this? Was there a way to cut down on my meds without killing me by taking me off everything for two weeks? What would Dr. Horf’s position be on all of this?”
‘I just have a lot to think about,” I explained to Rick. “Don’t mind me.”
Dr. Horf’s office was in a very modern-looking building. Everything was all sleek black marble and glass and mirrors and was on the first floor and spread out into big handicapped-accessible rooms. All the doors had automatic door openers where I could just push a button to open the door. I really appreciated that. The offices even had modern abstract art copies of paintings and sketches hanging up in the exam rooms and everything was very bright white fluorescent lights and smelled like clean Cal-Stat hand sanitizer and was organized with labeled drawers and closets. Not one item seemed out of place.
The waiting room was as big as most people’s entire one-bedroom apartments, but it was all one room. It was also brightly lit by those very white fluorescent lights. The typical health and wellness, drug abuse prevention, and AARP magazines were carefully placed and fanned out on end tables between lines of chairs along the walls of the waiting room. There was a lot of empty space in the waiting room. The chairs were sleek black and individual, each one with a separate seat and arms and armrest and black seat cushion that almost looked like memory foam. I stayed in my wheelchair though, as there was no one to help me transfer into one of those chairs, and by that point in my life, I could no longer transfer independently. Plus, I didn’t think I’d be in the waiting room long enough for it to make sense for me to get out of my wheelchair.
One of the medical assistants at Dr. Horf’s office came all the way out into the waiting room when they called people’s names. When the young woman called my name and I responded she immediately took in that I was in a manual wheelchair and came over wheel me back to the exam areas.
Dr. Horf was a younger doctor, she had to be in her late thirties or younger. She had a friendly smile and long dark hair pulled back away from her face with a headband and some clips. She asked me some questions about my various diagnoses while pulling up all my medical records on a computer screen.
I was quite relieved when she didn’t bring up any ideas about putting me in a nursing home or stopping any of my medications, she just said that she that she wanted all of the names and numbers of all of my specialists so that everyone could be on the same page. That’s all I wanted as well, so I happily went through my phone and gave her numbers of the Nerve Injury Unit, Neuroendocrine and Pituitary Tumor Center, Neurosurgery, Comprehensive Neurology, Psychiatry, Urology, Gastroenterology, Infectious Disease, OB/GYN, Psychotherapy, Nephrology, Pulmonology, Interventional Radiology, Hematology, and Oncology.
Then she told me about a special program that her office and the insurance company had where a special case manager would follow me in between appointments and make sure that I had everything I could possibly need from my primary care doctor and from my health in general.
“The case manager’s name is Izzy, I can have you meet her right now if you’re interested.” Dr. Horf told me. “I think she could be very good for you. You can call her whenever you need to and she will try to keep you out of the hospital by planning to get you whatever health needs you have, met in the community.”
“That sounds great,” I told Dr. Horf.
This plan was light years ahead of anything Karen or Dr. Hammet had ever come up with. I was a little wary of case managers after people prying into my life in childhood and making some decisions that had harmed me and made things worse instead of better. But that had been more because my parents had been the ones talking to the case managers and they had presented a twisted view of the situation that was quite far from accurate. This time I would be the one directly dealing with the case manager, so I was hopeful that this would be a more positive experience.
From the moment Izzy first introduced herself to me, I knew I had made the right decision.
Izzy was a tall woman, at least 5’9. She had a long gray ponytail she wore in a French braid down her back with a velvet purple scrunchie tying it off at the bottom, and a comforting smile that was enough to immediately put anyone at ease. Her hands were large and she had no nail polish on, but her nails were neatly trimmed and perfectly filed.
“My job is to help you improve your own health care and get to a better quality of life with your illnesses. I help individuals access housing, transportation, medical devices that they might need, access better care services that they might need help advocating for, I can help you communicate with your providers about any health needs that may come up, I can be a liaison between you and your doctors and provide any education to you on your doctors’ treatments that they are ordering for you and help communicate it to you more clearly or communicate your wants or desires or issues back to your doctors. What I can do for you can be very flexible.”
“That sounds really cool,” I said.
“Well if you are interested we would sign the paperwork today and then set up a time for me to do a home visit and then I would sit down with you and we would put together a care plan.”
“Okay, I can do that,” I agreed. It sounded like something that could actually be really helpful. Sometimes it was hard for me to get a hold of my doctors. I had to wait on hold forever, and then they didn’t always call me back in time and by the time they did, I would have deteriorated so much that I would have no choice but to go to the hospital.
Maybe she would be easier to get a hold of. Maybe we could make plans to keep me out of the hospital. That would be so amazing. Maybe she would have input into the whole polypharmacy thing, and Dr. Horf, Izzzy, and I could figure out how to do something about it. I was started to feel a spring of hope bubble up, but I was afraid to get too excited about it and have it sink back into the ground.
Izzy brought me over a packet of paper, and Dr. Horf handed me a clipboard, scanning the usual typical boring legal documents to make sure I wasn’t signing anything too crazy, I looked it over quickly and then initialed and signed and dated in a few spots. Both women smiled at me. We were in this together. So, this is what progress felt like, it felt like an ice cream sundae after winning a gymnastics meet, I thought to myself thinking back to my childhood days so long ago.
Dr. Horf made a one-month follow-up with me, and Izzy scheduled a home visit in a couple of weeks. I had them fish out my planner from my backpack slung over the back of my wheelchair so that I could write the appointments in, and then Izzy herself wheeled me back out to the huge waiting room so that I could call for my ride.