Dear Cleveland Clinic and Kaiser Permanente (and all others who failed to do their job),
It’s the night before I go in for yet another procedure, where I have strangers poke and prod me with metals, and cameras, and dyes. Where I trust my body in the hands of people I really don’t know, hoping that they don’t treat me like I’m just another malfunctioning piece of anatomy. It’s been a fifteen yearlong journey...and I’m writing because I’m tired. I’m so very tired. See, had things been handled differently 15 years ago, I may not be having yet another procedure. I may not be as tired as I feel today.
Fifteen years ago. It seems so long ago. And yet, I remember the day like it was yesterday. I was 17. I was vomiting with a high fever and doctors were staring at me in wonder. I was just a baby and I remember some male doctor (whom I’d never had before) ask my mother to leave the room so that he could make sure that whatever was wrong wasn’t a “female issue.” I was a very Catholic girl, a devout virgin with a fear of sex that did not plague any of my friends who were actually having sex, and yet, the mystery of my symptoms meant I needed a gynecological exam. That was the beginning of a long, long, long line of doctor’s who (bless their hearts) wanted to think they knew the answer. I remember the ambulance trip I took from that office to The Cleveland Clinic. I remember vomiting while in a moving vehicle. It was surreal. I couldn’t understand how I wasn’t at home, with my mother’s hand on my forehead, on my bathroom floor. What a mystery it was. What a mystery I was...and all medical mysteries find their way to CCF. I remember the ultrasound, the doctors whispering, “Do you see it? No, I don’t see it. Do you see it?” as if I was not in the room, as if I could not hear them. I was 17, and that was a very, very scary moment. And I don’t think they realized that, cause for them it was more excitement...it was the thrill of finding something odd in someone’s body. I may have been a frightened girl, but to them I was purely a medical conundrum. Sometimes the person gets forgotten in the diagnosis and this is where I first felt that...I realized I wasn’t looked at as a complex human being, but rather a scientific, medical specimen.
The mystery unfolded in this diagnosis: a solitary kidney with a UPJ obstruction (a severe infection on top of a complex anatomical scenario.) And this is the moment where all of you (Kaiser, CCF, and others) changed my life forever. And I think you did it, like you do every day, without probably ever looking back on it. You collectively made a decision that changed the course of my life. In light of suggestions from some CCF doctors to follow up with surgery, the unanimous decision was to treat the infection, and have me follow up with a nephrologist. Kaiser doctors secured my mother’s heart by telling her that surgery wasn’t necessary. And I followed up with Dr. M. (I’ll spare your name, sir...but I hold you most responsible).
I saw Dr. M for the next five years, and despite the fact that I continued to have severe bouts of pain and numerous ER visits that kept directing me back to you, you repeatedly told me that everything was normal. “Yes, you spill protein in your urine, yes you have pain...but everything is okay” (although spilling protein is not okay, and we all know pain is not okay.) Dr. M, I’m not sure if you were being negligent. I’m not sure if you really believed there was nothing wrong. I’m not sure I have any idea what you really thought, honestly. But I do know this: I trusted you. I trusted you as most teenagers and young adults trust doctors—you are the educated, gifted, dedicated people who are committed to saving lives and we are meant to trust that. So never, ever did I imagine in those five years that my kidney function was being severely damaged by the condition that you and others said was stable. Never, ever did I think I would hear words like Stage Four Chronic Kidney Disease.
Is it worth it to go into the details of how my life has been affected by your decisions? Yep. It is. I was an active actress and director who was actually pretty successful in Cleveland. With my diagnosis, I couldn’t get health insurance because, well you know how those pre-existing conditions work--a solitary kidney with a UPJ obstruction doesn’t last too long on the cutting board of insurance lenders. But I was getting by. I was on tour, following my dreams with theater, in love. Life was great. But one little trip to an ER while on tour in Cincinnati (with the same symptoms I had had numerous times before) found me to be in renal failure. I needed immediate surgery. It’s kind of ironic--that doctor scolded my mother and my partner for having ever let my condition get to this point (as if it was their fault.) I could go on and on about the medical bills I had to pay for 5 years after that surgery...but money means nothing next to the reality of how my health and life have been affected. I have had 3 surgeries since then—two minor, one major. I have had to get a job that gives me the best health insurance possible and it turns out that it’s not really what I want to do, but do because of my need for good benefits. I’ve been faced with the bitter reality that pregnancy is too serious a risk because of the stress it would put on my single kidney. There’s probably a lot more. But really, the kicker is this: the one kidney I have that was functioning at 80% when I was 17, now functions less than half of that. I currently have a GFR of 30 (ish, give or take a few numbers depending on my health) and in the past 3 years it has declined at a rapid pace. Once it hits 20, dialysis and a kidney transplant are on the table. And this, doctors, could all have been prevented had you decided to do things differently.
So...what do I want from you? Why am I writing this letter? It’s not like you have a magic wand that can make it all better. And legally a lawsuit isn’t possible because we’ve past the statute of limitations. What do I want?
I want to trust doctors again. I want to go into this procedure tomorrow and feel like I’m in the hands of people who won’t make the same mistakes that other doctors have made before. I want to know that regardless of the medical journey that lies ahead of me, I have doctors who are going to do everything in their power to protect me...who will work proactively, not reactively. I want you to hear my story, not because my story is so unique or important, but because maybe it will make you consider the guidance you give other patients so they don’t end up facing unnecessary medical journeys like my own.
I want to forgive you. I want to move on. I want to feel like I’m more than this disease when I walk into your offices. I want you to know who I am...that I come from a huge, loving family, that I write music and love to connect to strangers through my music, that I am a sensitive, but strong young woman with a hell of a lot left to do on this Earth and I’m not going to let the affects of your poor medical judgments keep me from doing so.
I’m not bitter. I just want medicine to be better. I want people who are reading this to demand more from medicine, because we only have one body to work with in this lifetime and we need to demand the best from doctors so that we have it for as long as we possibly can. If the doctors we have aren’t doing their job, then we need to challenge them to do better. You don’t need a medical degree to hear the messages your body sends you--be responsible and respect those messages and share them with people who can and will do something about them.
Sincerely,
Tired yet FULL of LIFE
