There comes a time when you just know that things aren’t going smoothly anymore. I had been working with my doctors several weeks to no avail. It was becoming more apparent that the doctors that I had just didn’t know what to do. And that’s ok. So how do you know when it is time to move on and where do you go from there? I knew it was time to move on when I started to get very conflicting recommendations from my team. “You need to get your spleen out vs. I think we should wait…” “We need to change this medicine and that medicine and increase this one vs. Stay the same and wean off this one…” And then I would tell them what the other specialist told me and ask if they had talked… sometimes they had and sometimes they had not. And their reasoning for doing what they wanted to do regardless of how it conflicted- were very valid. I understood that they were doing what they thought was best for me, but they really just didn’t know what that was anymore. This was a very scary time for me (like the rest of it had been a cake walk). Some very smart people with lots of letters after their names, and who are very respected in their healthcare community- were scratching their heads and avoiding my stare when I talked to them. And you know who was instrumental in helping me keep my sanity? My GP (PCP), my family doctor. She is not a specialist, her job is to coordinate my care and keep things in focus. And that is what she did. I would often call her very distraught after talking to a specialist and she would help me refocus. And because she was outside the picture just enough- she also could make a valid recommendation- time to move on. But where to move on to? Your local hospitals (especially in smaller cities and towns) are great places to treat common diseases (horses), but I needed someplace that wasn’t looking for common, we were now looking for a zebra (this is a medical slang term- When you hear hooves, don’t think zebras, think horses). I needed a place where they actively looked for zebras. These are usually your universities and research institutions and fortunately I live near the “Harvard of the South” Vanderbilt University. There was one particular afternoon where I was crying after hearing once again that “You most likely have an infection… No you most certainly have cancer”. Her very simple answer to this, “We are going to Vanderbilt. Stop listening, and focus, we are going to Vanderbilt.” It took a couple of weeks, but that is where I went- Vanderbilt and met one of the best physicians I have ever worked with. He is my Yoda.
I know that one of the hottest conversations in healthcare is how much time you spend in the physician’s office and how much time he/she spends with you. The average “ill” visit to a provider is allotted 15 minutes. 30 minutes if you are there for a physical. About 5-10 minutes if you are there for a follow up visit. This is the time that the insurance company will reimburse the provider for no matter if that office visit really took that long or not. So on a rainy January day I took my entire medical record, a CD full of images and a lot of hope to my new doc. And we sat and talked. And talked. And talked. For close to 3 hours. His computer would not open the CD images, so he walked to another office in the rain just to look at them. And then he came back and talked some more. And then he gave me a truthful answer about what he thought was going on. And very kindly he looked right at me and said with a calming confidence that you need to hear after many weeks of uncertainty, “You have waited long enough, we are going to get this taken care of. You most likely have lymphoma. We just need to find it. We will start there and I will also draw some additional lab work, because I am not completely sure, but we are going to figure this out.” Even though there was still some uncertainty, his transparency and confidence made me feel like we were on the right track with this doctor. So as I left his office I sat down and cried.
Well, we all know that isn’t the end now don’t we? But the relationship and trust that we built during the first visit allowed me to build confidence in my doctor and it was going to be needed, because we were going to continue to confound even some of the sharpest minds at Vanderbilt.