A medical team that works

It is no secret that Gessner and I had many struggles with our medical teams throughout his life. It seemed like the clinic systems we visited were so broken in so many ways and we found ourselves fighting to get the care the we thought was necessary. I have many, many examples of times when that medical system failed Gessner, including failures that put his life in danger. My experience with the medical system was stained by trauma and a seemingly adversarial process.

So, when I was diagnosed with cancer and knew that I would be interacting with a medical team on a regular basis, I was nearly as scared of that prospect as I was of the cancer itself. I remember having so much anxiety related to talking to my surgeon about my decision regarding surgery--I was afraid that he was going to disagree with me and that I was going to have to fight for myself. This was not because of anything my surgeon said or did, but rather because of my experience with Gessner's CF-related care.

My cancer team has been amazing and I think that my story is an example of how medical care can and should work. It gives me hope that for future patients and support networks. I hope to take what I have learned in this journey and advocate for changes to the CF care paradigm, at least as it relates to care of adults with CF. Of course, I have to focus on surviving myself right now, but I am excited about the possibility of sparking some change in the CF community.

One of the things that makes my team so amazing is so very simple and fundamental: The doctors interact with each other. I have many different practitioners on my team, each with his or her own specialty. My doctors actual read the notes from each other and if appropriate, speak with each other about my care. This seems so basic, but it is quite the opposite of what I experienced with Gessner. We would often show up to an appointment with a new specialist only to be asked why we were visiting, with the doctor knowing next to nothing about Gessner's situation. Thankfully we were informed and usually knew why we were seeing a particular specialist, but I am sure that is not always the case. When Gessner was evaluated for a lung transplant, his team of doctors did sit down and speak, but I know that more discussions could have been useful at other times. I understand that logistics and sheer volume of patients can make this different, but it is critical that the doctors who are caring for a patient work together and to do that, there must be good communication.

Today I received a telephone call from one of my doctors to check in with me since I had missed our appointment last week. But before she called she looked at the notes in my file and saw that I was having a lot of problems with nausea. So, when she called, she already knew some of what was going on. The fact that she 1) called to check on me and 2) took the steps to investigate before calling amazed me, again, because of my prior experience. This communicated to me that my doctor actually cares about me and my well-being and that she has an active role in my care. Again, I know that there are a lot of reasons that this sort of thing might not happen in other arenas, but I think that it is something that should happen, especially when someone is dealing with a serious, life-threatening disease.

I love my cancer team and find that working with them is helping me heal from some of the trauma of my prior experiences. Too bad I had to get cancer to do this, but for today, that will be my silver lining.