One year ago, I asked my nephrologist to refer me to someone else... and it's not at all what you're thinking.
There was never a problem. We had a good relationship. But I had more to gain.
I'm sharing this story because it was a great, healthy step to take on my journey with polycystic kidney disease and I gained a lot just from one meeting with a new doctor.
Here's a little bit of background:
My name is Ciara ("Kee-ra") and I'm a 35-yr-old mama of 2, living with chronic kidney disease.
I had been working with the same nephrologist since my PKD diagnosis at the age of 17; his team knows all the intricate details of my family's history, and I felt like I was always in good hands.
Over the course of the pandemic, the clinic shifted to virtual appointments and it became more challenging to book time with the team. I am grateful to be healthy and in a position where I don't require regular care, but after some time, I realized how much I enjoyed check-ins and discussions around proactive healthcare.
My nephrologist was located in a large hospital, working with patients with far greater challenges than me. The appointments were usually quick (very efficient) and never left much time for chit-chat.
But you know what... I like chit-chat!
So, I wondered if maybe a community nephrologist could be a better place for me. I wanted to meet someone with interest in (and knowledge of) PKD who would have a little more time to sit with me, answer all my questions, and give a fresh perspective. So I asked my nephrologist if he could refer me out, and he made sure to send me to someone who was well-respected as a PKD specialist. I appreciated this immensely.
Here's how the first meeting went with the new nephrologist:
Firstly, to my delight, I arrived at a doctor's office not too far from my home, with free parking. I was used to driving to a large hospital, downtown, that had [very limited] paid parking. I already felt more calm going in.
The nephrologist was NOT wearing a white coat and his office was warm & welcoming. I felt a sort of sense of relief as I sat down across from him at his desk. We chatted about history and current health stats and I found that he listened well and was genuinely curious about my story. I came prepared with notes and made sure to cover everything on my list (and never felt rushed of flustered).
This became my longest, most in-depth PKD appointment ever.
This was not a 2 min check in where he told me to drink more water, re-consider Tolvaptan (tried that already! read about it here) and reduce my salt intake. This was personal, this was detailed and this felt much more impactful.
Of course there wasn't anything new for him to say (there is no cure for PKD), but it was the way he spoke that really left me feeling optimistic.
He encouraged me to live my life to the fullest, to continue to prioritize my health and try to work WITH the diagnosis. He reminded me to take things in stride and not stress over all the details. His fresh perspective was comforting because it more closely mirrored my own, personal perspective of PKD and the message I try to share with our community.
The best part: the validation I received for my efforts in being proactive. Rather than focusing on the massive size of my kidneys, or the scary number of cysts, or regurgitating cookie-cutter advice, he looked at me and simply said "you're doing a great job."
That hit different.
I've often been told "you're doing all the right things," and I've found that frustrating and even discouraging. This new phrase had me feeling proud, rather than defeated.
My takeaway from this appointment was that words are powerful, and good conversations are what I need most right now. I've now found a wonderful doctor who I can see being more of a mentor (for this chapter) than a clinician, and who I will enjoy working with over the next many years.
A message to other patients:
Pease know that your care team is not set in stone. You can make changes, you can look elsewhere, and it doesn't have to be if/when there's a problem.
Surround yourself with people who lift you up and support you in the ways YOU need!
Registered Holistic Nutritionist (RHN), real food advocate, PKD warrior & advocate