February 7th

It was a year ago today that I was diagnosed with this kidney disease, and just a month shy of two years ago that I first started experiencing symptoms. I still have to read the diagnosis from my phone when I’m asked what it’s called. Otherwise, I always leave out one word or another.

Proliferative glomerulonephritis with monoclonal igG3 kappa deposits

It remains a mouthful.

Since the onset of my symptoms, I’ve had multiple kidney ultrasounds, an echocardiogram, a PET scan, a bone marrow biopsy (ouch), two kidney biopsies, wore a heart monitor, seen two hematologists, a cardiologist, a fake nephrology physician’s assistant, four nephrologists, numerous amazing nurses, an ophthalmologist, scores of other radiologist-types, traveled 3290 miles round-trip for treatment, received eleven doses of chemotherapy (and counting), been prescribed 14 different high blood pressure medications or doses, been prescribed four diuretics, been hospitalized twice spending 10 days in the hospital, been on various doses of prednisone since May 1st that have clearly tried to kill me, and have had literally countless vials of blood removed from my arm.  

What a ride. And it ain’t over yet.

What have I learned through all of this? Hell if I know. I mean, I’ve definitely learned that having a rare disease sucks. It particularly sucks when you live in a health care wasteland like New Mexico.  Initially it was surprising to me that I couldn’t get good care here.  We have many hospitals, including a teaching/research hospital. But… they know what they know, and this disease they don’t know.  Long before my diagnosis I was known to bitch to anyone who would listen about the doctor shortage and turnover here. And the wait times to get an appointment.  But I never gave treatment for serious illnesses much thought. My eyes have certainly been opened to that.

I also know we have to speak up for ourselves, be our own advocates, and NOT get intimidated by doctors and, in particular, specialists. As I said before, they know this one thing—doctoring—well. That doesn’t make them perfect or brilliant or godlike.  Get your questions answered. Don’t leave the exam room until you do. And if it’s a fight every single time to get information, time to get a new doctor—and make sure he/she knows why you’re moving on.  

I could launch into a whole thing about not taking your good health for granted because you never know when it will be snatched from you, blah blah blah. That’s true of course but we ALL take our good health for granted. If I were “cured” tomorrow, I’d probably just go back to not questioning my health.  I mean, what are we going to do? Dwell all day long on the fact that we’re not actively dying? That sounds like fun. I think it’s just human nature to not think about this stuff until we’re forced to. Some sort of self-preservation mechanism.

I could go off on a rant about our broken health care system, which *I* believe to be true, as evidenced by the cost of medical care, the number of people who don’t have insurance, health disparities in minority populations, people who’ve gone broke due to one stroke of bad medical misfortune, and on and on.  And I think we’re all partially to blame for that (some more than others), from politicians to insurance companies to drug manufacturers to doctors and yes, even down to patients.

[Quick story: back in 2016, I attended a debate of the candidates vying to be the city council representative for my district. We were able to submit questions on a note card so I asked “What is your plan for attracting and retaining qualified health care providers to address the shortage of such professionals in Albuquerque?”

When the moderator received the card, I saw her nod and mouth “Good question.” When the question was asked, I was particularly interested in the response of the guy who pretty much had my vote at that time, a younger up and coming community activist. But he just kind of scrunched up his face in apparent confusion and said, “*I* don’t have any problems getting appointments for medical care.” And literally that was the end of the discussion.  HE didn’t have any issues getting care so apparently no one else did either. Alrighty then. I guess it’s not really an issue.  I’m just making it all up. Eyeroll.]

Back to my point:  We’ve all played a role in letting it get to the disaster it is right now. But… while I have my opinions about how things could be improved, I’m way too ignorant to take that task on.  I’ll leave it to the people far brighter than I am to figure this one out.

I would, however, like to be more involved in this instead of just complaining about it. There is a work force committee here that I’d actually like to look into and join if they’d even want my input. The issue is time and energy. At present I have neither. But maybe some day I will. As I said, I have ideas. I might even have some useful insight as both a rural health care provider and a person who’s had to navigate the system far more than I ever wanted to. So maybe that’s a goal if my health improves. It’s definitely of interest to me.

Also of interest: February is “Rare Disease Awareness Month.” And February 28th is “Rare Disease Awareness Day.” How fitting that I was diagnosed in February! There is a whole movement around rare diseases, with websites, events, public awareness campaigns, appeals for funding/research, etc. And according to the National Organization of Rare Diseases, “The zebra is the official symbol of rare diseases in the United States” because of the commonality of its black and white features and the uniqueness of its stripes.   Who knew?

The symbol of rare diseases

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s