I don’t think anybody was prepared for the curveballs that 2020 has thrown at us! The current situation we are facing is almost surreal – and quite terrifying. Trying to protect a vulnerable child – from both the virus and also any illness or injury that would require hospital admission during this time is exhausting and frightening.
Tanya is one of the ‘high-risk patients’ who are especially vulnerable to COVID 19 as her spleen was removed and she has chronic renal failure. (Although the spleen is not essential for survival, some of it’s functions include filtering of blood and helping the body fight infections so people without a spleen are more prone to infections) As a family, we are taking the lockdown rules very seriously as it is literally a life or death situation to us.
Since we shared Tanya’s story in 2019, we have learned that her dad, Paul will be her donor, which is great news as cadaver donors are very scarce. Unfortunately we also now know that Tanya’s little sister, Mia (13) also seems to be affected by the rare genetic condition; Mia’s renal ultrasound remains abnormal, some of her liver enzymes are raised but her overall kidney function is still ok. Her pediatric nephrologist sees her every few months, so for now we follow the ‘wait and see’ approach with her.
Tanya’s liver enzymes remain abnormally high and our nephrologist called in the help of a leading hepatologist in Cape Town. She suggested that they repeat the liver biopsy. This was done in January and the results of the biopsy, unfortunately, showed signs of fibrosis and mild hepatitis in her liver, but we were still given the green light to proceed with the transplant!
In February Tanya’s fistula failed unexpectedly. At the time it was her only dialysis port and a non-functioning fistula meant no way for her to receive the life-sustaining dialysis. Until the transplant, Tanya remains dependant on dialysis, which is done 3 times a week and takes about 4 hours at a time.
Luckily Tanya is under the care of one of the best vascular surgeons in the country who is always just a WhatsApp away. Tanya had emergency surgery to repair her fistula but unfortunately was back in the hospital a week later with wound infection. The vascular surgeon also implanted a perm cath in Tanya’s neck again and at the moment she has 2 available dialysis ports.
At the beginning of March we were due to see Tanya’s nephrologist for a routine consultation. He called us about an hour before our appointment and told us not to come to his rooms as there was a potential COVID 19 patient at the hospital where his rooms are and he did not want Tanya exposed to even the slightest risk. A week later he called again, this time to tell us the transplant will be postponed indefinitely as the risks involving transplant – especially being severely immunocompromised following a transplant – are simply too high. Needless to say at the time we were devastated as the transplant has been our number 1 goal and focus since we learned Tanya has end-stage renal failure in 2018.
Not long after his call, the hospital where our amazing nephrologist works – and where the transplant was going to be done was closed down as a large number of people who can in some way be connected to the hospital tested positive for the Coronavirus, more than half of those were staff members. And later we learned a few dialysis patients at the same hospital also tested positive for COVID 19.
Looking back we can see how every single delay was meant to protect Tanya. And so in spite of the current situation and uncertainty we can declare, we are blessed! Attempting to fit a renal transplant into the current mayhem was just not possible and we have resigned ourselves to the fact that our long-awaited transplant will just have to wait a bit longer.
For now, we are blessed to live in what can only be described as paradise! A remote area where our little house borders on the beach and a lovely coastal forest where we can go for long walks and enjoy nature without the risk of exposing Tanya.
We also learned that faith, family, and friends are what keeps you going, and we rely strongly on all 3! We continue to tell Tanya’s story to spread awareness for the desperate need that exists for organ donors. A ‘yes’ from you and your loved ones can save up to 8 lives. So please have that discussion with your family now – and then let everybody know you decided to be somebody’s hero.
So why not consider donating your organs and give life to someone like me? It really is simple. You can register via this website www.hero777.co.za , it will cost you nothing to do so and you do not need any medical tests. All testing will occur when you are no longer with us. Please be a Hero and give someone an incredible gift one day.