Petra in her fight with Kidney Sarcoidosis failure

My name is Petra Johnson originally from the Bahamas but now I live in Canada. Firstly, I would like to thank everyone who has stumbled on this page to read my story. I'm 20 years old, in 2019 at the age of 16 I found out I had sarcoidosis (kidney disease). Sarcoidosis is a disease that affects the kidneys and sometimes may lead to kidney failure. Symptoms of kidney problems include inflammation, the formation of sarcoid “granulomas in the kidney and the formation of the kidney stones made of calcium. When I found this out my life has never been the same as a young lady, supposedly to be a vibrant adult, eager to begin a life full of purpose. It has now been all taken away from me because of this disease that has drastically become a big deal and a big life changer for me.

Thinking of life and where I am in my progress, I have suffered silently daily until I begun to have suicidal thought whiles I sank into more depression as my mental health begun to take a toll on me. I began to isolate myself away from family because it was too much for me to be around people and see others living their best life, while I looked at myself deteriorating from these life threatening diseases, at this point I already started slitting my wrist, arms and thighs plotting to take away mines. As I got more ill, I relied on my family more because they have the strength I needed along with persons who know my story to go through this traumatizing moment so I didn’t feel I am doing it alone on my own. I had already mentally and emotionally given up many times and couldn’t wrap my mind around why this happening to me, why can’t I be normal? So many questions with no answers.

This journey with this disease brought a lot of hardship and struggles and a lot of financial setbacks for me and my family. That is why I was prompted to do this to fund my account in search of help and that my story can be heard. I'm a college student with high hopes of defeating this disease. Since my diagnosis, an update on one of my kidneys one is severely shrinking and the other is half way gone. The doctors have already placed me on the list for a kidney transplant. I hope it has already been 4 years and I am still waiting to be donated because my need is great. Still trying to battling these odds and trying to know I can live in this world and become some in life, to feel a smile of accomplishment although it can be impossible most days having to go do dialysis 3 times a week.

I've been on dialysis for 4 years, the pain oh, God the pain, to sit there and literally watch my blood leave my body and return, to feel the pain that you feel even if you are not on the machine the thought of will this be my last time? What if something goes wrong? All these thoughts that get in my head and drags me down the mental drainage of depression and fear of losing my one life but I keep a little mustard seed of hope that I will live and not die and no matter how hard it gets I keep saying it to myself and take the encouragement from my support that I will be ok and I will make it. I have cried a river of tears for pain, frustration, confusion and desperation to get new kidneys.

My body is getting weaker and weaker and I'm trying to be strong but it's hard. I just want my life back. I just want to be a young adult again. I just want to live and have fun, maybe even travel the world before I die. All I’m trying to say is that it's hard being the only one in my family with this disease and having to avoid them so they don’t always feel sorry for me. Having to go to the hospital watching your blood recycle in a man made machine is not easy. Not being able to know how long you have to live these things haunt me. Having a weak immune system catching infections begin in the hospital 2 months to a year is really depressing.

When I first found out I had dialysis I had to get a tube in my chest, I couldn't take a shower. I had the tube in my chest for a year and it kept getting infected. Thel tube also fell out of my chest and I had to get a skin graph on my wrist so that I could get my treatment.

In November 2023 due to an unstable slope in front of a facility as I was leaving I lost my stability in a unknown step and ended up falling, when I fell popped the tendons in both of my knees and was hospitalized for 3 months while in the hospital I’ve been very depressed because this was now another infliction laid on me like how much can I take, it’s been two weeks since I left the hospital, I’m using a walker to move around in my house and trusting the processes to which I am thankful. My mom also helps a lot and I don’t think I would still be here without her by my side, but she is getting tired as anyone would, I never thought I wouldn’t walk again but I am making good progress. I don't like depending on people. I like to do things for myself, I already know what it felt like embracing my independence before but now it is none. My mother does all she can to support me and the bills are piling up. This is my hope that my story touches you the reader no matter how big or small I appreciate it. I just want to relieve the burden I put on her and give her a moment so she can breathe and catch herself and not worry how I will get my medicine or how she will find ends meet or maintain overhead bills and other stuff, as I continue to seek ways to get help. Thank you for your time and donation.

Your Truly,

Petra Williams