So, after a really sucky (clinical description) renal biopsy, and a few consultations, I settle on a great doctor at Cedars-Sinai. We discuss Prednisone and I cry. You will come to find that this is my go-to reaction in most situations I find the least bit upsetting and doing so has earned me the self-administered nickname, “The Fragile Fleur.” In case you are not all that familiar with Prednisone (and why would you be?) it is a horrible drug with terrible side effects. Instead of Googling it yourself, I shall sum up what WebMD will tell you: SIDE EFFECTS- YOU ARE FUCKED. It’s everything that can go wrong probably will go wrong and please don’t forget the weight gain AND the side effect known as MOON FACE wherein your whole face just swells into a big circle!!
I am already tragically round, I don’t need to weigh more, but MOON FACE! I just can’t…So, I cry. Fragile Fleur. However, I do have an Ace up my sleeve. I am getting married in a week and even the doc thinks it’s cruel to start me on this med before the wedding as the last side effect I didn’t mention is…psychosis!! Apparently, my labs are good enough to let it go for another week or two before beginning the treatment, so that’s what we agree to do. I am happy. I stop crying, finally.
I slide into the driver’s side of the car and there is only one thing I want to do: blast Black Flag as loudly as my speakers will allow. Machine Gun Kelly. Not too long before I found out I was sick, I saw this amazing show called Roadies, I love all things Cameron Crowe, and my favorite character was Wes. I found out the actor was named Colson Baker a.k.a. Machine Gun Kelly. I’m immediately taken back to a group I did at the drug and alcohol treatment center where I work as a therapist. It was a music group and a kid picked a song that was helping him get through his addiction and stay in new sobriety and it was called, “Lead You On” by an artist called Machine Gun Kelly. I had never heard of MGK but was immediately taken with the lyrics and the video-there was so much raw emotion and beautifully voiced struggle in that song.
Now, several months later, I’m struggling and I’m wrapping myself around what Machine Gun Kelly offers and melding what he means to me, especially now in a time of great uncertainty. I often find myself wondering why I am turning to a 27 year-old guy from Cleveland, Ohio when from the outside it would seem we have nothing in common? What is to be gleaned from a stranger in the middle of a storm who is standing somewhere so far away from me in life?
But there is connection to be had and felt and I will be exploring that here…with you.
When I conceived of this blog, it was as an exploration of my newly diagnosed illness, and the revolution from within that I feel I am experiencing (some days) and the unlikely role that the music and personality of the artist Machine Gun Kelly appears to be playing along the way. And then I realized…to be about those things, it’s going to have to be about everything and it’ll be big and somewhat sloppy and not always pearls of wisdom from the possibly dying. And if that’s okay with you, l’d love to show you around…
So, of course the question is where to begin? Rapid onset kidney disease that came out of fucking nowhere and all of a sudden my kidney function is fucked; the inner battle I’ve been rolling around with as to exactly what kind of sick person I am or how in the world MGK got in the mix?
I guess we start with the ol’ kidneys. It was September 2016 and I was diagnosed with a blood clot in my left thigh that required immediate anti-coagulation, so I received a shot at the ER and pills from my doctor to thin my blood. It turns out she gave me too much anti-coagulation for too long and I began to lose too much blood. When my new doctor ordered labs on a Wednesday morning, I got the call that afternoon that I had to go to the hospital and receive three blood transfusions to replace the missing blood. They took labs all day long and my kidney function was off, but thought to return after a few weeks of my body adjusting to the new blood. It never did. In January, I was diagnosed with IGA Nephropathy which is a little autoimmune disease that fucks with your kidneys’ filtration abilities. I was put in class 3b kidney failure, there are only 5 classes. 5 is End Stage Renal Failure-dialysis and death. Yes, I feel sorry for myself.
I did not receive this news gracefully. I would love to say that I immediately vouched to fight valiantly and utilize every Whole Foods and vitamin store along with whatever USC had in store for me to beat this disease but that was…um..how shall I say..not the case? My face flushed red hot and tears just poured down my face as my treatment options were reviewed with me, Cortico steroids that cause horrendous side effects or chemo, maybe, and a painful kidney biopsy stat. All for treatment that might be effective and if it weren’t then I’d be prepped for dialysis and put on the transplant waiting list. I looked at the floor spinning out beneath me. “Jesus fucking Christ, what is happening here?” I feel my chest constrict and suddenly air is short supply. I tilt my head back and gasp. “I think I’ve just been broken.” I can clearly remember thinking that to myself. “This is the moment I don’t come back from.” I start to wail harder in the doctor’s office and she looks askew at me.
My mind goes back 14 years in time to me sitting on my best friend’s stairs after I’ve found his dead body handing in his closet waiting for the paramedics to come and being so traumatized and just knowing in that moment that a part of my soul would forever stay on those stairs, trapped in horror and grief. I am wondering if I will be trapped in this office too? Am I being told that from here on out it’s a slow decline to death. Is it going to hurt? Will there be good drugs? What are the odds I get a kidney? Can I get one of my best friend’s? She’s like a foot shorter than me, does that mean her kidney is Barbie sized?!? The thought makes me laugh and I start to come back to the doctor’s office and I schedule the biopsy and leave.
And this was the start of my whole big adventure that’s got me writing this blog for the relief of being able to get it all out and in case someone out there is going through it too.