What I Wish My Doctors Would Have Known When I Was A Patient and Caregiver – Part 1
This is part 1 of a 5-part series. To read the next posts follow the links at the bottom.
We’re Human – Make a Connection with Us
I can’t emphasize this enough. When you make a connection with a patient, they will see you as human instead of a superhero. This will help them listen better and be more likely to ask questions. It makes for better understanding by the patient and improved outcomes.
A few months after our first trip to KU Medical Center Mike was seen at home by a provider who told him based on a CT scan and blood tests that he had lung cancer. He’d had a chest CT done at the Mayo Clinic in late July – this was early November. He’d seen the pulmonologist at KU Med Center a little over a week before. The pulmonologist felt since he had just finished antibiotics for pneumonia and that the doctor at Mayo had suggested a repeat CT in six months that a scan didn’t need to be run that day – we’d wait until January. He also told Mike to seek help from his primary care if he felt like he needed something. So, he had.
Everything got way out of hand. His primary care nurse practitioner had told us he had lung cancer and then sent him home. The next morning, she called him and said they were going to fly him to KU Med Center. He told her no. He called me at work, and I asked if he had talked to my dad, a retired doctor, to whom we had shown the images and report the night before. Not yet. So, he did. Then he called me back and said they wanted to send him via ambulance. Again, he said no. If he needed to go to KU Med Center, I’d drive him.
What ended up happening was dad found a surgical colleague that they met where he was doing surgeries that day. They did a thoracentesis to remove the fluid around his lungs and got him set up with an oncologist at KU the next week. I never did understand why it was urgent the next day when it hadn’t warranted a hospital stay the night before.
When we saw the oncologist the first thing he said to us was that he knew where we lived. He had grown up in Goodland, KS about 60 miles west of us. Then he showed us his notes saying that he had read all the notes leading up to this appointment and would normally have a page of notes that had all his patients for the day on it. This one was front and back with only Mike’s notes and his handwriting was tiny.
He asked if we could stay and have a test run the next day. He set up the test and an appointment for the next week to get the results. He called the day before the appointment, told Mike that they hadn’t found anything and that we didn’t need to drive to Kansas City for those results. He would need to talk to Mike’s team to see what the next steps were. We drove to Kansas City six times in the next eight weeks to try to find cancer. They never did.
On our last trip to KU Med Center in those eight weeks, we met a thoracic surgeon. At that point, we had no idea how important this surgeon would be in Mike’s care. At that appointment, he told us that the PET scan that had been done that day showed that both strategies he had would be overkill and wished us well.
I met the thoracic surgeon again when Mike was hospitalized the following April. He had done a lung biopsy. The nurse who was checking on people in the waiting room came around and asked if the surgeon had been in to talk with me. He hadn’t and she said maybe he had taken the biopsy to the lab – that was something he sometimes did. He had and came in to talk with me and tell me again they hadn’t found anything.
The next time we met him they had discovered a hole in Mike’s esophagus. The surgeon didn’t remember me until I reminded him. Then it started coming back. On that trip, he removed the stent that they had placed a few weeks earlier and placed a feeding tube because Mike’s esophagus needed to heal. After that, he did several dilations on his esophagus, and we got to know him well. He listened to Mike telling him about going to truck pulls with his uncle and said his grandfather did similar pulling with buffalo in India. He would give me hugs when I needed and told me to be sure to take care of myself. Then when I was diagnosed with breast cancer, he was one of the doctors who I asked for advice. He gave me the name of my breast surgeon.
Then there was Mike’s primary care doctor who he started seeing in December of the year they were looking for cancer. The next February Mike got the flu and spent 10 days in the Colby hospital. He came home for two-and-a-half days then we were back at the ER, and he had a different strain of flu, so he was back in the hospital. They started talking about sending him on to KU Med Center on Friday evening. On Saturday morning Mike called me and said they were taking him to Hays. I was very confused. I drove to Colby and the minute his doctor saw me he left the people he was talking to, came over, gave me a hug, and explained why they needed to transfer Mike somewhere else this time.
These are a few examples of the good experiences we had with Mike’s doctors. They helped Mike and me connect with them. We listened better and weren’t afraid to ask the questions we had because they related to us on a more equal level.
Do you have something that you wished your doctor knew? Share it with me in the comments below or send me a message here. I may add it to my list.
Whether it’s your patient or doctor remember it’s Somebody’s Daughter or son.
Make a Connection in the comments below.
Onward!
