Lupus And Your Doctor: Starting over with a new doctor and Developing the Doctor/Patient Relationship

Where to begin?  

It’s been awhile, and while I’d like to fill in the details since I last wrote, I’m not ready yet. I thought I was when I sat down to write, but now, I’m not. So I think the easiest way to begin is to start with the present, and work backwards. But I have a lot of fun things to focus on already in 2023 and I’m anxious to share, so let’s get started with blog post #1!

Biggest news in my life with lupus is that I started with a new rheumatologist,  after spending more than 22 years with my beloved Dr. Stahl, who retired in the fall.  He was known as Dr. S in my book, and I practically dedicated a whole chapter to him, or rather, to the effective doctor/patient relationship that we cultivated over the years.  The chapter was titled, “What’s Up, Doc”, and to this day, it’s one of the chapters in “Despite Lupus” that prompts the most questions. “How did you get your doctor to listen?”, “How did you have time to tell him everything?”, or “How did you even know what to tell him?” The answers, while relatively simple, take some work, but definitely get easier over time. The strategies I’ve used are sprinkled throughout the chapter, but also on my blog. This past post and this earlier post really highlight the keys I found to fostering a great doctor/patient relationship. And not only was it a great relationship, but a constructive one that brought me health, wellness, and healing.

I definitely plan on applying all the same tactics with my new doctor, and prepared a few things in advance of my first appointment to highlight. I made notes about my napping over the years, my Raynaud’s, my history onCellCept, and then any new symptoms I was experiencing, like my recent, though minor, weight loss. The weight loss is most likely due to the experience of caring for my sweet mom last year (See? Opening up already…), but I figured it was worth pointing out because this new doc, Dr. T, might not know that I never fluctuate in my weight…unless I’m sick, or apparently under stress. But little did I know that Dr. T would need a FULL, 20 year, health history. Turns out Dr. S had exactly four entries in my file from the last 22 years. Four! Can you believe it?

Before we all judge, it’s important to consider that Dr. S. had his own practice for 21 of those 22 years, and he never converted to EMR (electronic medical records). So when he closed his practice and moved into this new one, he made short notes about each patient he brought over and those are what were entered in electronically. Technically, all of my history is available – but only three summarizing notes made it to the EMR from my early years with lupus. The fourth entry was from my last visit – and he had everything in there – about my mom, about our discussion about seeing an ophthalmologist if my blood shot eye didn’t resolve (which it did), about my urinalysis results, etc. So new Dr. T wanted to hear it all – and I actually had a hard time filling in the blanks! It’s been so long since I’ve told my lupus diagnosis story – I actually found myself mentally going through popular blog posts to remember all my ups and downs! Biopsies, lung taps, lupus-induced pancreatitis, blood transfusions, joint pain, swelling, pleural effusion, pericarditis, photosensitivity – I tried my best. I ended up forgetting to tell her about hair loss (duh!), and about leaving my full time job because of my health (double duh!), but there's time for that. As I said, developing the doctor/patient relationship takes time. I already have both hair loss and quitting my job on my list for the next appointment, and I’m sure I’ll be adding more over the course of the next few weeks. Her office already called post-appointment and said I’m low in Vitamin D and made a prescription change, so I love that she’s proactive about lab results. I think we’re going to get along just fine. (And the fact that she’s younger than I am makes me think she won’t be retiring any time soon!)


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