By Lara Wahab
To say that I’m familiar with the NHS would be an understatement. Living with diabetes for 25 years will take its toll on your body: I’ve nearly gone blind, suffered from a bone infection and been hospitalised for a month as a result of my condition.
But it was still a surprise when, last April, I was told my kidneys were failing, and I was in desperate need of a transplant. I remember feeling angry about missing work and feeling anxious about getting back to continue with my day. I left feeling numb, confused and without hope. It’s been difficult to come to terms with the fact that diabetes, the condition that has denied me of so much over the years, was now taking these vital organs away from me – and threatening my entire life.
People like me waiting for a kidney transplant have a couple of options: receiving a living donor (often a family member), or waiting on the national organ list. But I found myself being put forward for another kind of transplant: an SPK (simultaneous kidney pancreas) transplant. It would mean waiting for a deceased donor (who would need to be the perfect match for me).
While agonising to wait longer, I was strongly advised that my best chance for long-term survival would be curing my diabetes with a pancreas transplant and addressing the small problem of kidney failure at the same time. That way, diabetes could never again threaten the new kidney. The thought of living out some of my life without Type 1 diabetes seemed like nirvana – as if I was able to go back to my seven-year-old self, and tell her that everything was going to be okay. I felt incredibly lucky – honoured – to be given this second chance.
I’m still looking for answers as to how they can define a life-saving operation such as my kidney transplant as ‘non-urgent elective’ surgery
Three months of rigorous testing later and I was finally accepted for the double organ list. Most days I feel like I’m hanging on a knife’s edge; never thriving, just surviving long enough to try and make it until I get the phone call. There have been a few wobbles over the last six months on whether to accept a donation from my mum or stick out the wait, but time and time again, my amazing care team have convinced me that the long-term benefits of the operation will be worth the crippling anxiety. Go science!
Then, a plot twist: coronavirus.
I started to fear the worst back in December, knowing that when the virus hit the UK, having Type 1 diabetes and end-stage chronic kidney disease, I was in the vulnerable category. Something niggling away in my mind, I logged onto my patient portal to see my transplant status: ‘SUSPENDED’.
Panicked, I got in touch with my care team. The words “I’m afraid all SPK transplants, and kidney transplants are being suspended for the time being” rippled through me like a shockwave.
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