There’s a good chance I’ll delete this post at some point, but for now here it is…
It’s been a tough couple of days.
Backstory for the uninitiated: I’ve been fairly severely overweight for most of my life, but it’s gotten significantly worse in the last five years or so. I’m also not as young and resilient as I used to be, so my body is starting to show signs of the long-term effects of obesity (namely high blood pressure and severely fucked-up lower joints). Back in August I decided to get really serious and do something about it. I went to an appointment at my family doctor’s office, and since my doctor was out of the office I saw one of her colleagues, who recommended that I try my local hospital system’s weight management center.
I went into the first meeting bound and determined to make this my one shot, to really get my act together and get my weight under control. The program, which I now refer to as The Shake Diet, basically consisted of giving up all real foods for up to six months and replacing them with meal replacement shakes. I figured it would be worth it, that I could handle six months of nasty shakes if it meant making a huge difference in my health and well-being. I did pretty well, despite the shakes tasting awful and being horribly expensive. I made it three weeks.
The program is medically supervised, meaning you see the program nurse once a week for a health evaluation, and once a month they do a battery of blood work to make sure your system is handling the changes okay. I had my first blood work three weeks in, and the next day I got a panicked phone call from the nurse. My kidneys (well, kidney–I only have one, but that’s another show) had almost completely shut down. I stopped the Shake Diet immediately, and what has followed has been six months of constant blood work, doctor visits, new medications (including a six week adventure with Prednisone which I hope to never repeat). My nephrologist* was optimistic, thinking that my kidney had suffered some temporary trauma and that with time and medications I’d bounce back.
*that’s a kidney doctor, for those of you keeping score at home
Here’s the thing about being a chronic kidney disease patient: I have a standing lab order on file at my local lab, and once a month I get tested. It’s like my Big Monthly Exam, and it’s basically pass or fail. The big test is the serum creatinine test, the major test used to measure the function of your kidneys. A “normal” creatinine level is 1.5 mg/dl or below. Over the course of this journey my creatinine has spiked as high as 4.1 mg/dl, and last month there was a glimmer of optimism as I dipped back to 2.6. This month I spiked back to 3.7. In other words, I failed my Big Monthly Exam.
Three months ago my doctor sat me down and gave me a dose of brutal honesty: I’m probably headed for a kidney transplant. We’ll do what we can to stave it off as long as possible, but she’s been honest that I need to start preparing myself for the inevitable. I’ve been asked to start saving the veins in my right arm for dialysis (no blood draws or IVs in that arm, no blood pressure cuffs on that arm, etc.) and to start identifying potential donors. I’ve also been told to prepare for up to 2-4 kidney transplants in my lifetime, as a transplanted kidney is likely to fail after 7-15 years and need replacing again. Also, apparently the State of Michigan only allows 2 kidney transplants per person, so I’ve basically been told that I need to be prepared to establish care at the University of Wisconsin transplant program–one of the top transplant programs in the country–because they don’t have the 2-and-done rule.
Here’s the bizarrely ironic part: at this point no one will even consider me for a transplant evaluation because of my weight. Yeah…I can literally hear The Fates laughing at me.
This is all well and good. There’s nothing I can do to change it, so I’m just kind of rolling with it. It’s big and awful and scary, and I’m probably doomed to spend countless hours of my life wandering the halls of various doctor’s offices and hospitals. Ya gotta do whatcha gotta do, as the saying goes.
More backstory: Last spring I had a chronic cough that basically took over my life for about two months. I didn’t have a primary care doctor–a few years ago my primary doctor went through a family crisis and ended up having to skip town and move back to Montana in a hurry, leaving his patients hanging. I went to urgent care and had my cough looked at, and the physician’s assistant basically shrugged, wrote me a scrip for Tesselon and sent me on my way. Ze Tesselon…it did nothink. So I made a bunch of phone calls, and finally ended up having to throw up my hands and call my insurance company for help. The rep at the insurance company was surprisingly helpful once she heard the hopelessness in my voice, and she connected me with the office of Dr. Krista Hillman, my new primary doctor.
I can’t even tell you how much I love this woman. She’s a third-year family medicine resident fresh out of med school (she’s actually younger than I am) and she’s amazing. She’s so much fun to talk to, and refreshingly candid and honest for a doctor. Her office staff is equally awesome. I mean, I’ve never been able to walk into a doctor’s office and have the receptionist just know who I am and say “Hi!” They’re organized and efficient, they communicate well with their patients, and they’re fun to deal with–pretty much the antithesis of every healthcare entity ever.
But yesterday, something Earth-shattering happened.
I went in for a two-month “Hey, what’s up” meeting with Dr. Hillman (and to get some paperwork completed for HR at my employer), and we had a pretty lengthy talk about my kidney stuff and my weight loss needs, and we had a pretty candid talk about my failings at weight loss and strategies to combat them. Dr. Hillman acknowledged all my failings as being completely normal and expected, and never once did I feel shamed or embarrassed. I felt like a human being, dignity and pride intact.
Then she asked me the magic question. “So how are you dealing with all of this stuff, emotionally?”
Not well? What ensued was a long conversation about how I’ve always felt like I’m living my life as An Other, and how that feeling was now more intensified by the impending medical drama I’m about to go through. We also talked about how I’m not a big believer in psychotherapy or counseling, and I felt totally validated. But I was downright shocked that she was able to pick up on my lack of emotional well-being without me even talking about it. And then she offered to help. She wrote me a scrip for Zoloft, and she’s going to keep checking on me monthly-ish.
So that’s where I’m at.