Good Doctors

I've been reflecting on the many doctors I've been blessed to have known in my life.

My first doctor—and the one I saw for the longest amount of time—was Dr. Brunworth. He wasn't a perfect doctor, but he was a darn good one.

I will always remember the compassion and care I received when going to his office. I remember the way the door used to swoosh open, the striped seats in the waiting room, the kids corner with toys and books, the way you used to walk down a hallway of files and charts, the various rooms with semi-themes (especially the room filled with all the baby pictures, mom and I used to comb through those seeing if there were people we knew.) I remember the chemical smell of the x-ray room, used to develop the films.

The staff over there knew us well. Mom and I were over there frequently enough due to my CF. And they were so accommodating with that. There was barely a room in that place I didn't see, because if the waiting room was full or it was winter and filled with colds and flus, they'd let us wait elsewhere so I wouldn't catch something. I sat at their nurses lunch table, I waited in the hallway in the back, I'd sat in the doctor's office, wherever they had some space and could get me away from people, they graciously let me.

Thinking back on this, it really seems of another era. I can't even imagine being allowed to do this at Mercy now. Nothing against Mercy, they're fine and all, but in a world with so many more rules and policies—not to mention, a non-existent relationship with anyone on staff—this seems like a request that would be denied. Or would require a lot of explanation. Maybe I'm wrong, but I truly feel that Dr. Brunworth's practice was a special thing.

In my CF specialists, we started out with Dr. Kemp, who was good. Dr. Mallory was pretty good, even though he gave me a bit of a scare when I was young. Then we switched to Cardinal Glennon and were graced with knowing Dr. Albers and Dr. Noyes. Albers was wonderful, and I'll always remember how assuring he was when, after my first visit with him, we were suddenly having to admit me in a hospital we knew nothing about.

I may have shed a few tears when it was my final visit with them. I know there is a picture somewhere of me with everyone there. Judy, the nurse, was wonderful too. I felt such a bond with them that I even called one day after I got married, just to let them know I had. I knew they'd like to know that, since marriage for CF people is not a given. They knew Jarrod, too, since he'd been visiting me in the hospital since I was 19. And a few weeks later, I received a wedding card, signed by everyone on the team, congratulating me and Jarrod. That was a pretty special thing too.

I left them to transition to "adult care" once I graduated college. I transferred to Barnes, and the only doctors I really don't have many good things to say about are the ones at Barnes.

But my most recent doctor in Columbia, Dr. Kouba, was one of the best. She started out as a family medicine doctor, and was not a pulmonologist by training, as most CF specialists are. However, at some point many years ago she took an interest in CF and immersed herself into learning and treating the disease. I truly feel her background gave her a more well-rounded approach to everything, instead of such a focus on the lungs. Yes, the lungs are a BIG part of what makes CF difficult, but they are not the whole picture. Not by a long shot.

Unfortunately, I had to say goodbye to her recently too. I received a letter in the mail saying she was retiring at the end of April. When I called in early May to request an appointment because I was feeling worse, I was fully expecting I'd be seeing the new doctor, Dr. Chairman. Turned out Dr. Kouba was 'technically' still there, and also turned out: she wanted to see me one last time.

I was glad to hear it, because I wanted to see her one last time. Once again, we had developed a great relationship as patient and doctor. She truly, truly cared about me, and how Jarrod and I were doing. I had an appointment in January, and there was no mention of her upcoming retirement. I was very puzzled by the announcement, wondering if she was okay and if something unfortunate had come up. I wanted say a proper goodbye.

During my appointment, she told me she had, ironically, lung disease. And this was a forced early retirement, because she could no longer be in a hospital setting like this. She didn't elaborate on this "lung disease" of hers, and I didn't want to ask too much. But I had a hunch things may not be looking too good for her, because she kind of alluded to how she didn't know what the future would hold.

During my hospital stay, I talked with someone who used to be on our CF team. She told me Dr. Kouba has what is called "interstitial lung disease" and... she would eventually need a lung transplant. Wow...

At my appointment with her in May, it was so sweet because she was like "Yeah, you called and I was like I wanna see Jamie one last time!" She said, if I'd let her, she really wanted to give me a hug. I had been hoping the same thing! And as our visit concluded I asked if she'd be willing to give me her address, I said I'd send her a Christmas card. It was a little hard to tell, since she was wearing a mask, but I think she was tearing up a little. She said she'd love that, and provided it to me.

I am so saddened to hear of her diagnoses. I'm certain I was not the only patient she cared so deeply about. A great doctor like her does not deserve something like this.

As of right now, I am technically under the care of Dr. Chairman, but he will be handing off the CF patients to a new doc there. I'm not sure about all that, but really CF is not our primary focus as of right now.

Dr. Kouba does not know about my cancer diagnosis. I've wanted to reach out to her and see how she is, but if she asks how I am, not including this new piece of very important information would feel wrong. And I don't want her to feel guilty because, in truth, she did misdiagnose me. I don't hold it against her at all, though, and I hope no one else does. And really, she wasn't the only one, if you recall, because even when we went to see an oncologist, the doctor who specializes in this, he didn't suspect this to be cancer. And even when we were doing the test workup with Dr. Chairman, none of them felt this would turn out to be cancer either. No one expected this to be cancer because I don't present any of the usual symptoms associated with this, and because I am so young. Yes, a part of me will always wish that we could have found this sooner (who wouldn't?), but even if we had found it the first time I told Dr. Kouba about this 'lump' near my scar, it would have already been stage four because it would have spread.

Now I'm meeting a whole new team of doctors with this cancer process. I've been told by multiple people that Dr. Tan, from Siteman, is really good. So I'm thankful to be on his radar. Back when we were thinking this was ovarian cancer, I was briefly under the care of Dr. Hunter and he was amazing; I so wish he could have continued to be my oncologist, but his specialty was gynecology.

I hope you have also been blessed with good doctors in your life. And if you haven't, I encourage you to do something about it. Even though it took a little bit of pushing from Jarrod, switching from my doctors at Barnes to my awesome doctor at Mizzou was the best thing I ever did. And it probably saved my life, because I know with 100% certainty I would not be sitting here as healthy as I am right now if I'd continued on at Barnes. Part of that is me, and that I am a different person with a different outlook on life and on my self-care now, but still: we all look to our doctors for their background and experience. Like I said, it can feel like a gamble, but sometimes switching is worth the risk. Your health is the most important thing in your life, don't settle for mediocre care if you feel there might be better options out there.