We’ve kept something pretty big off social media for the past few months, but after visiting the Doctor’s rooms a few weeks back, we decided that it was time to share it with the Mother Muses Fam, and anyone else who might be going through a similar journey.
My husband was diagnosed in October 2018 with renal failure – meaning that his kidneys had stopped working as they should, and he would need a transplant. Your kidneys do a lot of what I like to call ‘the dirty work’ in your body – they remove waste and filter liquids. They also control chemicals and fluids in your body, help control your blood pressure and help make red blood cells. There is no cure for this – if you’re in renal failure, the only way around it is a transplant, or dialysis (which has various complications, and cannot function as a kidney would anyway).
Since he is diabetic, he was also offered the possibility of having a double transplant for both kidney and pancreas. This sounds daunting but is a secret silver lining for us – if he can have both successfully, his diabetes will be cured, thus avoiding future diabetic-related complications with his other organs and tissues.
The process of getting onto a transplant list in South Africa is exceptionally complicated. Everything has been centralised, and there are a bunch of rules and regulations that hinder the process. Test after test after test must be done, with monthly check ups and numerous doctor meetings. You have your referring doctor, then your ‘testing’ doctor (yep, super scientific term), a bunch pf doctors you’ll never meet, and a bunch more that assess you like a processing plant. The costs involved are exhaustive, and I wonder why this is something that is not Government funded? Or perhaps only those on medical aid are charged the Coco Chanel prices, and those that are not have access to the system for free? Afterall, it was centralised to avoid the ethical issues of paying for organs, yet our medical bills beg to differ this point of the argument. I have yet to touch on the emotional side of this experience, but that I will leave for another day.
The journey has been both extensive and rapid, shocking and exciting, disheartening and joyful. With every new curve ball thrown at us, a fresh wave of emotion follows. Dimitri’s life is literally in the hands of a few panel members of Johannesburg’s Donald Gordon’s institute, and there is nothing more than anyone can do about it. It is by far one of the most challenging waiting games we have had to play in our lives yet! And this is, as they say, only the beginning.
Over the next few weeks I’ll cover other aspects of this journey, starting with the emotional Sturm und Drang we have been on. It took a lot for us to decide to share this news, it wasn’t something we planned to do, especially on social media. The can of worms it opens can become a tsunami. However, having said that, the reason we decided to open up about this news was as a means of educating, connecting and supporting, not as a means for gaining sympathy, attention or (my favourite social media backlash) for ‘likes’. Sometimes, you share something so publicly for a higher cause than yourself. This experience is showing us that there is little education or support out there for people going through this, and if documenting this journey helps even one person, it is worth doing so.
Pray & Slay,