March 19, 2017 by Leah
I’m getting the idea, from contacts in the local medical community, that my local nephrologist might be a worst-case scenario guy. When I leave my appointments with him I feel stressed out and like I’m doing everything wrong, even though he’s outwardly likeable. It’s the exact same way I felt with my children’s previous pediatrician and I’m so glad we switched, because my children are actually and have always been doing fine and I do much better when everything is not a crisis.
One of the things about being a kidney patient is that it has turned several situations that would have normally been routine into high drama. Like when I was in the hospital with preeclampsia, the OB hospitalists were freaking out about my kidney failure, and my nephrologist in Spokane explained to me that kidneys freak out everyone who is not a nephrologist. This proved to be the case for one obstetric nurse practitioner, two ER doctors, and one urgent care doctor over the following weeks as I got through the initial post-surgical transition period (and all the medications that went with that). Getting back to my regular OB after baby M was discharged was completely fantastic because she is “brilliant but reasonable,” to quote a local labor and delivery nurse, and she doesn’t freak out about or sugarcoat stuff.
Because of the kidney disease, I now feel like I’m high risk for everything and a giant headache, so I waited out a sore throat for three weeks before going to see my primary care doctor a couple of days ago. He was like, “Dude, don’t do that. I’m not going to freak out. I’m not really a freak-out sort of person.” He was also pretty surprised by everything that had happened since my last sinus infection a year ago and made it clear he would like to help. And I thought, “Yeah, like that’s going to happen.”
Ever since this ridiculous saga started, doctors and nurses in my circles have been politely wondering (or encouraging my own wondering) if perhaps I should get a second opinion. I’ve had two different prognoses from two different nephrologists so far (granted, at different stages), and I feel like my care has been really fragmentary because of the sheer number of different providers I’ve seen in the last six months. I also feel frustrated with the way my current nephrologist seems to just be waiting for things to get bad enough for him to swoop in on his white horse with his shiny pharmaceuticals and surgeries and brushing off my wanting to try to help myself first.
The general consensus seems to be that even if I felt like my care had been seamless, a second opinion would be warranted when faced with something like chronic kidney disease that will permanently impact my life.
So. I got some recommendations for people to go see in Portland and finally got up my courage and called the OHSU nephrology office. The lady there was really nice and told me exactly what I need to do and that the doctor I want to see (well, the entire staff) is booking out to April at this point. It turns out my primary care doctor CAN help me, since I need a referral from someone, and it needs to include notes and lab results from my current nephrologist’s office, so I’m waiting on a call back from him and I should be able to actually set up an appointment for a second opinion early next week. I’m trying not to hope for the best, but I so badly want to hear something different that it’s hard not to.