THE JOURNEY BY KEVIN VERMAAK
I live with Primary Schlerosis Cholangitis and this is my Story. You will read about Hospitals, Recovery, Family, Friends and products I used to fight back.
What is Primary Schlerosis Cholangitis
PLEASE NOTE THAT "THE JOURNEY" CONTAINS SOME GRAPHIC CONTENT AND VIVID DESCRIPTIONS ON DAY TO DAY LIFE WITH PSC. VIEWER DISCRETION IS ADVISED.
PSC is a rare condition, affecting approximately 1 in 10,000 people and typically occurs in middle-aged adults. The exact cause of PSC is not fully understood, but it is believed to be an autoimmune disorder, in which the body's immune system mistakenly attacks the bile ducts. PSC is a progressive disease, meaning that it tends to worsen over time and it can eventually lead to complications such as cirrhosis, liver failure and bile duct cancer. While there is currently no cure for PSC, treatments are available to manage symptoms and slow the progression of the disease.
PLEASE NOTE THAT MY JOURNEY STARTS ON THE HOMEPAGE! CLICK THE BUTTON BELOW FOR QUICK ACCESS TO THE BEGINNING!
My Livingston Nightmare
When my brother first noticed my eyes had turned yellow, I had to go see what was wrong with me. I had no medical aid and so made arrangements to go to the Livingston Government Hospital.
I had to stand in a queue to make an appointment to see a Doctor and after +/- 6 hours, I eventually got to see the Doctor. I must mention, before Livingstone I had already seen 2 General Practitioners who confirmed I had Yellow Journders. The Doctor at Livingston was the 3rd to confirm that I was in fact Yellow and needed to go for a Magnetic Resonance Imaging (MRI) scan. A MRI was scheduled but to make sure that I got the scan, I had to book my place. There were a lot of patients waiting for a scan and to ensure I got the scan, the Doctor said that I have to stay over.
My wife was happy that it was not cancer but unfortunately had to drop me off on the Monday morning. Monday had arrived and pillow in hand, I booked myself in.
Four nights in Livingstone just to have a scan done. What a shit hole. Livingstone is a place people go to die. Its sad actually.
Anyway, those results got emailed to a Specialist and the Doctor informed me that I would probably have to go to a Specialist in Cape Town as there are no Doctors that Specialise in the treatment I need here in Port Elizabeth.
The next day I could go home. Not too long therafter, I was diagnosed with Primary Schlerosis Cholangitis.
The Start of the Change in my Life
I was religious and still am, I think even more so now. Look, I’m not getting in to the whole religion thing but I personally do believe in a power that is so great, its unexplainable. God saved me, my wife, kids, family and friends helped in this journey so much. I could not have got where I am today without my family and friends.
My whole life had changed and whatever I was trying to fix, my arm or my leg or my mind. Trying to do exercises just so I could build muscle to lift the kettle or help my wife do the dishes. I would ask God for the help, and help I got. It could have been in the form of me getting a weight from a friend to going to visit a pal down the road. The walking just to go say hi was the exercise to strengthen my leg. I took a broom stick and added the weights from the dumbbell to make a bench-press for my arm.
Guys the Coloscopy bag on the side of my body was horrible. Every fourth day my wife would have to clean it. Change dressings, clean the wound (I had a drain with a pipe sticking out my body).
In the beginning I didn’t even have a bag. I just had a dressing and that was being changed every night and on some days that leaked and it was disgusting. Wow life was crazy.
Thinking of my Family made me fight!
We are building at the house and the bricks and cement in a wheel barrow were my deadlift. It was tough but I knew I had to do it or I would wither away. I was trying to gym, trying just to do normal things and this bloody wound on the side of my body was so irritating. The one morning I woke up and my entire shirt that I was wearing was yellow and green from the oozing. I knew when it was infected, then the liquid stuff was thick and creamy. I love my wife not only because she is the mother of my kids and a good wife but because of what she had to endure. It is not easy doing what she did and still does. She doesn’t have to do it but she does. Thank you, God, for my wife.
Shit man, it was horrible and it stank so much. We didn’t hide this from the kids and did dressing changes Infront of them. Shame, they would always ask questions. “Dad, why is it green”?
“I’m a super hero, like on the justice league guys. That’s why my blood is green and I have a pipe sticking out of me”.
They believed me and still do. By the way every Tuesday night I go and fight crime. Hahaha.
Gym became easier and the tablets became part of my routine. Everything got normalised and life carried on.
I had a few infections regardless of how clean I kept the wound. That meant a night in the emergency ward at Greenacres Hospital. Sometimes I would sit there for hours waiting. All I wanted to do was go in get an antibiotic and leave. Fuck it was hard. Four hours would pass and this is a private hospital. I did understand that there are more patients in a lot more pain. But wow 1 box of tablets 4 hours. Let’s say this is how I learned patience and understanding. My political views will most definatly be shared later in this story.
Nice nurses and doctors I just think the system and the way things are run should change. Still look after the really sick and hurt first but make it easy for those needing small things better.
After the waiting I would see the doctor and get what I need. Off home I go with my meds and sometimes a new bag and a better perspective. Things were always changing around me, the kids are getting so big, so school challenges, my wife’s work challenges, covid was rife, times were tough for everyone.
I learnt to live with the bag and always wore baggy clothes. But as one problem goes away so another problem arises...
The pipe that was inside me was getting sucked back into my body. Peristalsis. Oh, how I wished I payed more attention in Biology class. Anyway, that pipe was getting shorter and shorter on the side of my body.
Now it started to hurt a lot. There was a part that you can screw on and that was hitting the part where the cut was. That part was thicker than the whole/ incision was so it was pressing so hard against it I had to pull it out and hold it out for a while just to relieve myself from the pain.
I would shower and slowly pull on it so I could get some relief when It was back out to the same length it started I would shower. Just before I finished, I would hold it for a while and psych myself up to get dried and dressed before it got sucked up by my body again. Time was of the essence and I for some reason always made it. Took pain killers and went about my day.
I even tried to wrap a whole lot of cotton wool together like a stopper with soft edges to alleviate the pain. I was so glad the doctor up in Cape town said “come here so we can remove all that stuff”. Finally, the next week I was on a plane to Cape Town.
Bad Things are Going to Happen
If life was perfect all the time, we would find a way to cause kak. We would get bored, depressed all those things. If you in your 20’s any nothing bad has happened in your life, then you are in your own right a miracle.
Life is supposed to be uncomfortable. Like the saying goes, it’s how you get up. Well, I’ve been knocked down so many times.
- Lost both parents young
- Lived with my granny until I was 10. Our mom could not afford myself and my twin till we were older.
- We lived in the poorer side of town
- We walked most places
- How do you make sure your stomach is full, you put your macaroni on bread.
- I never got anything new, it was always passed down.
- Christmas and birthdays were 1 present
- Casual day at school was still school shoes day because that was the only shoes we had.
I believe some bad things happen to people to make them stronger in preparation for what is still to come. So that when it does come you can handle it. God will not put something in your life if you could not handle.
Everyone will experience challenges. Please don’t give up.
The Night my Life Changed
It was a great day and I felt good. I had breakfast and was going to have a braai that night. The day was pretty normal. I went to shower to get ready for the braai…………. I remember getting into the shower and that is it. My wife knows the rest.
I woke up
I remember seeing my ex- boss in-front of me, he was smiling and talking to me. I realized I was in the hospital but for what, I could not tell you. I started crying, not sure why. I spent a couple of months in that hospital. I had my doctors but what all the doctors used to do was walk around as a team of doctors assessing patients. I like this because there were more than one professional looking at your health.
My doctors were great. I also had physios, occupational therapists and speech therapists looking after me. Every day they would show up and I was not keen at all.
Dialysis had to be done on me and I will say this. The person doing the dialysis at the time was horrible. Defiantly one of those,” I’m here for the pay-check only” type!!
Life was waking up to draw blood every morning. So much so that the nurse wouldn’t even have to find a vein, she just went through the scar tissue of the previous hole. I had 3 Friends that would try and visit every day in Cape Town.
They would take turns to visit. I believe my wife had a WhatsApp group that certain people were a part of. This was her support structure and they would share videos and picture.