An update

Its been a while since I actually did an update on my health. If you follow my blog, you will know that I am on peritoneal dialysis. This means I have a port in my stomach, which allows me to do my dialysis at home. This port is roughly by my bladder. About a month ago I started feeling ill. I was coughing a lot, throwing up and I was constantly exhausted. I ignored these symptoms. I assumed I was getting the flu or something.

A few days later (Thursday), my eyesight started going. This was actually quite a scary experience but thats a story for another day. I went to my ophthalmologist (an eye specialist) on the Friday. I stupidly decided to drive myself there and found that on my way back home, I actually could not see anything on the road. Like I said, it was a scary experience.

The following  day (Friday) my ophthalmologist called my nephrologist (my kidney doctor) because he was concerned about my deteriorating eyesight and my high blood pressure. Since my neph was going on holiday, we agreed that I would see his partner first this on Monday morning.

The weekend was when things started to get a bit rough. I noticed that my ankles were quite swollen and that I was coughing constantly, resulting in me throwing up all the time.


By the time Monday came along, I was struggling to breath. The neph examined me and decided immediately that I would need to be hospitalised because I was overloaded with fluid. I usually weigh around 59kg-60kg. On this particular day, I was weighing 64kg. Which is quite a lot for me considering I barely have an appetite these days and that I throw up a lot. My creatinine was 1600. This number should usually be around 80/90 if you have healthy kidneys. Although, a month ago mine was 800. So it had gone up by 800 in the space of a month. I went home after the appointment and sorted out a few admin things at work before heading back to the hospital at about 3PM. While there, they monitored my dialysis fluid output. It was not looking good. I had the following tests done while I was at the hospital.

Heart echo- this was clear although the doc had a few concerns about my heart rate.

Chest xray- this showed fluid on my lungs, which is why I could not breath properly and why I had a constant wet cough

Abdominal scan/ultrasound- this confirmed that my PD catheter had moved from my bladder to my liver

This is what I looked like, being wheeled off to my tests. The hospital was ice cold and I had forgotten my gown at home!


After all the tests on Tuesday and after being put on a drip of Lasix (medication used for fluid retention- basically, it makes you pee a lot), I was still not showing any improvement. I still felt horrible and I could not breath properly. The doc decided that I needed to start emergency hemodialysis. Since being diagnosed, I have avoided hemo an any discussions around it. Hemodialysis  is when a machine does the work of your kidneys. It cleans your blood for you. The process is pretty traumatising. I had to have an emergency port put into my leg. And I was awake. They only used local anaesthetic to numb the area. This was a slight disaster. But this blog post will become way too long if I get into that. In a nutshell, the port ended up in my left leg after they could not place it in the right leg. I had issues walking for two weeks after that. As soon as the port was in, I had my first session on hemodialysis. This was rough. It was four hours of blood going out, being cleaned and then going back into my body. I felt quite tired by the time they were done and I fell asleep immediately afterwards. That evening though, I ended up fainting in the bathroom. My body was not keen on hemo.

Wednesday and Thursday

My hemodialysis continued for these two days. All I did was sleep, throw up and continue with dialysis. The dialysis was helping in terms of my water retention. Slowly but surely I started breathing properly but the dialysis came with all its own side effects. I was dizzy, throwing up and passing out. I don’t really remember much from these two days. What I do remember is having absolutely no appetite. I had an amazing nurse (Kim, if you’re reading this, you’re amazing!) who helped me through it all. She literally sat by my side through all my dialysis sessions.


Surgery day! They went in and fixed my port. I have nothing to say about this day except that I remember absolutely nothing. Apparently I had a ton of visitors and I was quite hilarious to talk to. All I found on my phone the next day was this selfie…

Ok then Amina


Once again, an uneventful day. I slept and kept asking for painkillers. The surgery on my stomach meant I could not move much and the port in my leg made it very awkward to walk. I was miserable. The one good thing though is that my appetite came back.

Sunday + the following few weeks

The day I went home! This was slightly scary and daunting. I finished up my last dialysis session and was told that my numbers looked stable. My BP was down and the water retention was sorted. Remember when I said I weighed 64kg? 6 days later and I weighed 56kg. The 8kg was all the water I was retaining. Being home was a bit hectic at first. I struggled at first to get in and out of my bed. Bathing was a mission. Everything just seemed wrong and I felt as though I would never go back to normal. I needed help doing everything. Including simple things, like putting on my socks. I spent the following two weeks recovering and going for dialysis at the hospital. I had to have someone drop me and fetch me whenever I went. One week after being discharged, I went back to work. The only advice I have for post stomach surgery is that you WALK. It helps so much! Every day I woke up and took a walk up and down my house. And every morning I could see an improvement.I am happy to report that I am now completely back to normal… well, if we ignore the fact that my kidneys decided to fail :). My eyesight is back and I am driving again. My stomach port is healed and I am back to doing my dialysis at home and my BP is under control.

All is well.

3 thoughts on “An update

  1. Hi there Amina I’m so glad to stumble across your story. Read about you and your dad. My name is Michelle Thomas and I am the mother of a special young man, Duran 6yr’s. He has End stage kidney failure and also on PD. He’s a Red Cross Hospital patient. We live in Worcester, just ordinary Afrikaans speaking people. This morning I’m reading through a lot FB post’s of children suffering from this disease and feeling so emotional. But it helps me to cope to know that we are not alone. I wish you all the best with the upcoming transplant. Your such a beautiful girl!


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