I will say it now and I will continue to say it--YOU are your best doctor!
When it comes to our wellness and receiving medical treatment, we tend to place our entire lives in the hands of medical physicians because of the mere fact that they have studied, trained and took an oath to provide us with the best medical care.
Now I’ve been in and out of the hospital for almost nine years dealing with Lupus and Kidney Disease. Please let me be the one to say that throughout all the years, one thing that I have been able to take from my journey is that at the end of the day, YOU ARE YOUR BEST DOCTOR. You know your body best and it is crucially important to advocate to receive the best medical care if you feel like you’re not receiving it.
Here I am in the hospital, again, writing from my hospital bed. This time I tried not to get aggravated or frustrated because I’m more worried about getting better and getting the hell out of here. Being mad won’t do anything but spike my blood pressure and possibly cause additional issues that I really don’t have time for.
Back in October of last year, I had a nephrectomy which is the removal of the kidney. Bobby was rejecting and it was making me sick so after the Cleveland Clinic did “all” they could do, I went straight into surgery to have him removed. The pain afterwards was one of a kind and honestly, out of all the surgeries and needle sticks that I have experienced, that nephrectomy was the worst pain I think I’ve EVER felt. I cried like a baby and felt that the Cleveland Clinic wasn’t providing me with meds that took the pain away. Imagine, you had an entire organ removed where they cut through not only the skin but also the fat and muscle; and the only thing they provided you with to comfort your pain was two weak Percocet tablets and a damn muscle relaxer. You know I was hot. Not only that, the air condition was broken/off because of the new ER building and they were trying to link everything together. Eventually they gave me a personal fan and the A/C began working again. However, you know I was hot.
As a patient, I try to be very understanding because I look from both sides—a business/professional (what I learned in school) and from a patient standpoint. Now once my nephrectomy occurred and I felt better, was I was released and things haven’t been right since. I am constantly walking through the doors of Good Samaritan Medical Center trying to understand what is really wrong with me. I keep losing my appetite, having fever spikes, and fatigue which makes me only want to lay in my bed in fetal position. I kept ending up with infections and abscesses that formed in the spot where Bobby was located. I had a drain placed to drain the pus and boom! I felt better. However, I had a CT scan done before the procedure and the Radiologist asked me if the entire kidney had been removed and I’m like yes! I ain’t go through 26 days of pain for nothing at the Cleveland Clinic! The radiologist here at Good Sam Medical Center looked at me confused and stated that from the CT scan it looked as if a piece of kidney was still there—badly beat up but was there. I kept explaining to the doctor that the surgeon at the Cleveland clinic explained that the entire kidney was removed. So, we proceeded with the procedure and boom! I felt better. I got discharged and over time I began to get stronger and ready to take of over the world.
So why the hell am I back with the SAME issue? I now have that answer people. So apparently when I was getting Bobby removed, I was losing a LOT of blood, which obviously isn’t a good thing so the surgeon decided to remove a large chunk of Bobby and he left a piece of the kidney in my abdomen. However, the surgeon said NOTHING! Now that I have all these issues, my nephrologist is calling and finally getting the full story. I understand that I was losing a lot of blood and he didn’t want me to die in his hands but he couldn’t let me know about the piece of kidney that was left behind? To fast forward, I kept getting infections and people swore it was ME. People swore it was me being non-compliant and not taking my medicine and/or not taking care of my dialysis port. Hell, I started to question myself like “Brie, what’s good?”
However, it was NOT me. It was that piece of kidney that was left behind. That piece of kidney has now turned into mush, causing my body to go in fight mode (because it is foreign). The left over kidney pretty much has caused a very bad infection (E. Coli) where I had to be hooked back up to a drain; fatigue, that “gaggy” feeling I kept complaining about, headaches, pain in that area and nausea. Do you know that people die from that!? I have been in the hospital back to back about FIVE times since I had the nephrectomy! Do you know I just had a CT scan done at the Cleveland Clinic about TWO weeks ago and nobody said nothing about this? But the Cleveland Clinic is a renowned hospital known nationally right? So how did this happen? This is why it’s so important to use your best judgement. I believe that sometimes hospitals and doctors are so quick to do procedures and get to the next patient that they screw up, which could be detrimental to the patient! Now don’t get me wrong, I’m not trying to knock on the accomplishments of the Cleveland Clinic because I do believe that they are a very prestigious hospital. But it just proved that even the most renowned, top notch hospital can mess up as well. If you feel that something is wrong, it probably is! Many times, people go to the hospital explaining their issues and medical staff take a brief look and send the patient home, where it gets worst, possibly resulting to death of the patient—Kim Porter is a prime example.
As a patient, you have rights and you have the right to execute them. Medical staff sometimes like to draw their own conclusion about you without taking anything you say into account. If I specifically told you that I took a Tylenol and Percocet at home and it didn’t work, why would give me that same drug and charge me for it!? I get it that they want to be sure but look at the patient’s history! Ya’ll, I’m on TEN because it really pisses me off. Think about the older patients who can’t advocate for themselves or they have no one to advocate for them? That’s why nursing homes are the worst because medical professionals rush and overlook. They only care about money and not the actual care of the patient. As long as they have bodies in those beds, they could care less! They hire medical assistants, paying them little to nothing—affecting employee satisfaction and then they no longer care, rejecting the needs of the patient! Now look at me, I’m in here with a drainage bag connected to my abdomen, taking Morphine every 3 hours along with Benadryl because it makes me itch, all because something that could have been taken care of MONTHS ago.
If you don’t feel well and you go to the hospital and they try to send you home and the issue hasn’t been resolved, turn around go back! You don’t even have to go to another hospital, have them fix it. Also, it NEVER hurts to have a second set of eyes. If you feel like that physician is giving you the runaround, go to another one because just like the Cleveland Clinic overlooked this mess sitting in my abdomen, Good Sam is the one who caught it. Woosah. Breathe. Inhale. Exhale.
Did You Know?
An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.