April 2015. Picture yourself, a young recent college graduate, just started working, making a decent salary, and suddenly you’re told some of the hardest words you will ever hear:
“You have Kidney Failure.”
Up until that moment, I thought I had ulcers or food poisoning, but Kidney failure? It was a surreal moment for me. Everything literally stopped. In fact, by the time I was going to the hospital, my blood count had dropped from a normal of around 14 to 3.8; doctors were amazed I was still coherent. To break the tension in the room, the doctor asked me some questions;
“Do you know what the kidneys do?”
“They filter toxins out of the blood.” I reply nonchalantly.
I recall I had been feeling sick most of March, but I didn’t think it was that serious. Doctors flooded into the room trying to figure out how a seemingly healthy young man could end up here? Part of the answer is misdiagnosis. After a laborious bout with many other doctors, and a getting diagnosed with Ulcers, I was very shocked the real cause was kidney failure. I’ve heard several stories of people who actually have kidney failure, and they got misdiagnosed with typhoid.
Typhoid. Let that sink.
Misdiagnosis increases the time it takes the patient to get the required treatment, so much so, many kidney failure patients die without knowing what disease they have.
I lived to tell my story. I am here today not by my own strength, but by the strength of the medical team that received me at the University of Alabama Birmingham. Healthcare is like a tightrope and we the patients are the tightrope walkers. Even before I made it to that ER room, the tightrope was already set. This tightrope is a bio-mechanical mesh of the biological i.e. the doctors, and the mechanical, equipment they have at the hospital. Equipment that doesn’t work, or inadequately trained doctors make the tightrope loose. Once the patient is on that rope, if it doesn’t hold, the tightrope walker will tumble to their death.
There are two main variables when it comes to walking the tightrope. The walker and the tightrope itself. The walker, also known as the patient, shouldn’t be the focus. We shouldn’t have references of a patient being strong, or lucky, especially if the tightrope they walk on is flimsy; when standards that govern the tightrope vary immensely, patients are left searching for the best tightrope. This is frustrating and it passes the buck back to the patient. Ultimately it makes the patient feel the brunt of their illness, and instead of people asking for better standards of healthcare, a lot of them ask irrelevant questions like;
‘Why are you on the tightrope’ which translates to:
‘Why did your kidneys fail?’ Or
‘How did you get that?’
Kidney failure is difficult because I can’t change that my kidneys failed, or that they will never come back. It’s even harder because sometimes I feel like a helpless, reluctant roller-coaster passenger terrified of the ride I will have to endure the rest of my life. But the hardest thing is the irrelevant questions. Instead we should ask:
‘Why is a transplant so inaccessible?’ Or
‘Will there be more Renal nurses added to your dialysis clinic?’
‘What dialysis options do you have as a young person?’
Kidney failure. To me it’s a turning point in my life. I have discovered who I really am, and what having a positive attitude can do; you can decide the impact an event has on your life and I decided that this is going to build me. Kidney failure has made me appreciate life even more than I did before; however, its also made me ask the right questions, like:
‘If a tightrope is loose, how many people must fall before it gets tightened?’