I was diagnosed with Stage 3 focal segmental glomerular sclerosis (FSGS) in 2012, just a few months after our oldest son was born. This came as a massive shock to us because I had never felt sick.
It was during my pregnancy (around the 32-week mark) when the doctor could no longer ignore the signs that something might be wrong with my kidneys, that she advised me to see a specialist as soon as my baby was born.
As a precautionary measure I was treated with steroids, a course of treatment which was to be repeated in a few weeks. But instead, I went into labour in week 35. We arrived at the hospital at around 8.30pm and my son was born the next morning at 5.20am. The epidural had failed, so the night was a long and painful one. There were signs of pre-eclampsia as my blood pressure was through the roof and contractions were constant.
Three weeks after the birth, I found myself back in hospital being tested to try and determine a prognosis. This went on for four months and I had seen every doctor / specialist imaginable before finally having a kidney biopsy done to confirm the diagnosis. I immediately started with a renal diet and treatment for four months.
The treatment was first line steroids in very heavy doses. I was on the heaviest dose possible – 12 tablets a day (60mg), then seven tablets to counteract the side-effects of taking such high doses of prednisone as well as tablets for high blood pressure.
The effects of steroids
The treatments took a toll on my body. At times I felt as if I was having an out of body experience. My body was as weak as that of an 80-year-old. I could scarcely walk up a staircase without feeling short of breath. The mood swings were intense, so much so that people did not want to be around me. I am not sure if that was worse for my poor husband or me. To make matters worse, a side effect of the prednisone was that it caused me to blow up like a balloon and I looked as if I had been stung by a bee and suffered a chronic allergic reaction. It affected my self-esteem badly
Apart from the awful effects of the treatment I responded well and was in almost 90% remission, so I was slowly weaned off the steroids. Although I would never reclaim the kidney function that I lost I still had a reasonable level of function left that I was able to maintain.
But almost three weeks away from becoming treatment-free, a clot formed in my leg. It was then back to hospital for me, and I found myself on blood thinners for the next six months. After that everything seemed to be in check and I thought I was home free.
Before my eldest turned two, we decided to grow our family. Given my history, we weren’t sure it was possible, but surprisingly, we received the go ahead from both the gynae and nephrologist. On our son’s second birthday we were excited that a pregnancy test returned a positive indicator, but unfortunately, the baby was miscarried at around six weeks.
We tried again with no luck. As the song lyrics say: ” I get knocked down but I get up again“. I chose to live by this motto. We moved to Botswana for a short while and lost an early pregnancy there too.
I returned to South Africa to consult with the nephrologist. My condition had begun to deteriorate and it seemed I was to be put on another a course of treatment, but then we discovered I had already conceived our second son. Considered high risk due to my history and condition, I was given daily injections to prevent clotting and help prevent a further miscarriage.
Bruising caused by daily clexane injections.
Until week 33, I enjoyed a smooth pregnancy with no complications. I was being monitored closely and when it was found that baby had stopped growing, delivery was induced at 35 weeks. We did spend a few days in the neonatal intensive care unit, but our baby thrived. We took him home and soon after, moved back to South Africa.
We knew I would need a follow-up appointment with the nephrologist, but only got around to it six months later when I found myself pregnant again. At eight and a half weeks, I was admitted to hospital with hypertension. The pregnancy was not progressing well. Poor kidney function was having a taxing effect on my body, and both the nephrologist and gynecologist told me it would be ill-advised to continue with the pregnancy as I was already at high risk and chances of the baby or I surviving were slim.
With heavy hearts we let go of our baby. This was one of the hardest decisions we had ever been faced with. I couldn’t help but wonder if by some chance, we might both survive. It was a difficult time for us. Initially, I ignored the fact that my health was steadily declining, but in time, I realised my boys and husband needed me and that I have much to live for, so I decided to refocus and do whatever was necessary to ensure I would be able to look after the boys, watch them grow and make memories.
I went back to see my specialist when I was in end-stage renal failure. Extensive testing began again and my kidneys had to be flushed. After the first day of flushing, things were looking up.My glomerular filtration rate(GFR) had increased to 16 and my creatinine had come down to 319. The doctor was determined to get me to at least sub 250 and to try and maintain that function before considering dialysis. But after four days of flushing, my levels kept increasing and my glomerular filtration rate (GFR) decreased. This left no choice but to prepare for dialysis.
I had already made peace with the fact that I might have to go on dialysis and was even open to the idea of a transplant, though I did not expect I would need one.
Preparations were made and I had an arteriovenous fistula (AV Fistula) inserted for when dialysis started. An AV Fistula is when a connection or passageway between an artery and vein is made. The surgery was completed in mid-June 2018 and then started the strict renal diet to aid dialysis / transplant in case a cadaver donor was found.
We also took to social media to put out a plea to friends and family for a possible living kidney donor and made a plea for funds in case we were charged with anything out of the norm or that might not be covered by medical aid. The main aim of the fund though, was to pay for possible testing that might be required for the potential donor.
At the St Augustine Transplant Clinic
My husband has the same blood group as me, so he was the first one to be tested. He was a 33% match, and considering that a 20% match is acceptable, that was great, but when our blood came into contact, my own antigens rose to unsafe levels.
Desensitisation procedures could have been arranged, but that would have resulted in me being monitored every two weeks to check my antigen levels to see if they were dropping and to get them to an acceptable point. This is very costly, and there are no guarantees that it will work, meaning my body could reject the kidney anyway. We would only consider this route if there were no other options.
The following months were fraught with disappointments. Family members of the same blood group were ruled out and others were not in the same province, making the logistics of a transplant impossible. I did not know anything about transplantation prior to requiring one and I am still learning every day.
I have been on dialysis for nearly six months now. I go twice a week for three hours at a time. This has been extremely challenging, especially considering I have two young children and a demanding job. Choosing a time convenient for work and home life is a constant juggling act. While I am passionate about my job, I am obliged to to give up evenings with my children so that I can have dialysis, and feel I am being robbed of my time with them.
Shortly after starting dialysis, I had a few complications where the tissue was infiltrated but it quickly settled and now, seems to be going well. I am always under my dry weight so for now the process is mostly concerned with clearing toxins. I understand dialysis is a means to staying alive, but I cannot accept it as the only alternative. A transplant offers not only a better quality of live, but would allow me additional time with my loved ones.
Bruising from an infiltration
I would like to take this opportunity to thank my amazing husband, who has done so much for me. He takes care of our children, from feeding, bathing and putting them to bed, to making their school lunches, and fetching and carrying to school. He is one of a kind. The boys and I are truly blessed to have this legend in our lives.
A massive thank you, also, to my family and closest friends whose unconditional love and support keep me going. They are all worth the fight.
My husband running the comrades in a Hero777 shirt to help raise awareness.
To give up a kidney is a big ask, but depending on the complexity of the kidneys and how many arteries there are, they may be removed laparoscopically, which involves only a tiny incision and leaves barely any scarring.
I would have become a registered organ donor many years ago had I known then what I have come to know since this experience. It is so important to talk about organ donation as it saves lives. I encourage you to become an organ donor. May God Bless you all. #shareyourspare
My facebook page https://www.facebook.com/groups/591625741208339/
Leanne White
