I was hot.
I was furious at Wendy’s endocrine practice. This had been the third time in four years that I couldn’t get Wendy’s school orders without multiple phone calls that required phone trees and leaving messages on answering machines and waiting for someone to get back to me, multiple times. Every delay each year was for a different reason: wrong address, new medical management system, most schools start after Wendy’s school. But I had had enough.
I decided that I needed to look elsewhere for another place for Wendy and for me. This just wasn’t working for us. This divorce has been a long time in coming, but like real marriages, there are positives and negatives to a medical relationship. It’s when the bad outweighs the good, that you can safely feel like it’s time to walk away and join another practice.
But I didn’t want to do it just because I was angry, and it wasn’t because I had gotten bad news that I just couldn’t accept. An important thing I learned is that in medical relationships, as in most relationships, you can’t expect perfection, but you should expect to feel satisfied with the way you are being treated. And I didn’t feel like we were being treated well.
Add to this the fact that Wendy’s actual endocrinologist was leaving for another opportunity, so we felt like if we were going to make a move, that now would be a good time, because we were going to have to meet and use a new doctor anyway, so we might want to consider going to another facility all together.
Luckily we had many other options, living in a city like Boston. Not only do we have our hospital, but there are two other pediatric hospitals in the city. Additionally, we have the Joslin Diabetes Clinic, the oldest and most prestigious medical center for diabetes in the world. We had a lot of choices, and Michael and I really weighed them, because all of them were good options.
We decided to go with Joslin, because like Mass General Hospital, Wendy could transition from a pediatric patient to an adult patient within the same institution. Also, since Joslin is a clinic and not an inpatient facility, Wendy’s hospital home would still be Mass General (as she would still see nephrology there.) Finally, with Joslin there was an opportunity to possibly be part of new and interesting clinical trials that used a large sample size available to Joslin. Taken all together, it was worth a try.
To be clear, we did not go down in a blaze of glory, when we left the endocrine practice, we just called Wendy’s primary care doc and stated that since Wendy’s doctor was leaving that we’d like a referral for a new doctor at a new clinic. We made the appointment at Joslin with a new endocrinologist, a new Nurse Practitioner, and a dietician. We were told to expect to be there all day and to bring Wendy’s records.
The night before the appointment, I was really nervous, because it was the first time in a long time that we were dealing with new doctors in a new place. I may have punched the printer in the morning using colorful vocabulary because it wouldn’t print Wendy’s labs from the patient gateway.
Ok, I may have punched it twice.
And the drive there was awful, it’s in a super-congested part of the city, there’s no good way to get there. I thought to myself, “This better be amazing, because to drive here four times a year is really going to suck.” Parking was just as bad, and there ‘s no coffee shop, no food of any kind in the building.
But the nurse practitioner was great. She was patient and she answered all of our questions. Wendy liked her right away. She looked at Wendy’s numbers and made a few small changes, and then gave us all of her information as to how we could get a hold of her personally, not through multiple phone trees and receptionists and answering machines.
Wendy said that she felt like she knew this nurse practitioner more in the fifteen minutes we spoke to her than in the many years she knew the endocrine nurses at Mass General. She also admitted, later, that she might have felt better about the new nurse because she wasn’t super sick when she met her, and because we already knew about diabetes. Both observations were astute especially for a teenager.
When we met the doctor, who had been a fellow at Mass General, she complimented Wendy on her video for the Emergency Department, because she had been at the Grand Rounds where Wendy spoke about it, and she remembered to say something to her about it. This had an instant effect on Wendy. It was a great way to build rapport.
We broke for lunch and walked around the corner for sandwiches, and Wendy was excited to go to a new place to eat. When we go to Mass General, we often go to the same restaurants, as if in a rut. Partially it’s because it’s easy and it’s comfortable. But Wendy really liked trying somewhere new and said so.
We arrived back to the clinic in time to meet the dietician. Wendy really liked what she had to say. They went over her daily intake, each meal, each serving. She helped Wendy come up with a plan to eat a little more calcium, a little more protein, which involved a cup of high protein chocolate milk with dinner. Wendy was thrilled. I gave in to the pressure and we now have it in our fridge. It’s a little treat that makes Wendy feel like she’s in more control of her life. Oh, and it’s chocolate. At dinner.
After we got home, and after dinner, we all sat down together to debrief the day and figure out if we really wanted to make the change. We decided we did. Wendy liked the staff and felt heard. I felt like Wendy was getting positive messages from adults that weren’t just me and her dad about her diabetes. I also liked that Wendy was taking a little more control of her health, even if it included extra protein chocolate milk.
I called the old endocrine practice and cancelled our next appointment. I just said we have decided to go with Joslin instead since Wendy’s doctor is leaving. I need to decide if I’m going to write a letter to them explaining that we just didn’t feel like we were getting the attention we needed with hard to attain answers to questions, no meetings with dieticians, and no real transition as Wendy got older. I need to figure out the right tone, because we were grateful for the care we got when Wendy was younger, it just didn’t feel like we were being supported as she was entering her teenage years.
I’m still thinking about that part.
Divorcing your doctor is hard because you’ve built a relationship and sometimes it’s all you know. But if you don’t feel like you’re being heard or taken care of, it’s worth it to look elsewhere. You already know what you have, you don’t know what is possible. So go find out, gather your data, and make a decision.
I wish you luck, whatever you decide. It’s not easy.
It’s harder, I think, when it’s your kid, because you want to do the best by them, even when you’re not exactly sure what the best thing is. Hopefully, you can decide together.