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. The letter with the words ‘limited number of ICU beds available’ and ‘poses a risk to other patients’ arrived the next day, like a bitter afterthought.
Off the record, I had already been told that I was spot on about the government’s underinvestment in the NHS for a decade leading to the shortage in ICU beds, and therefore the suspension of various services across the board. 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.
As we self-isolate and get further into this, people like me will need support, love and kindness.
Waiting for an operation of such magnitude is difficult. Waiting for the waiting to start again, with no idea on timeframe is unbearable. Will I still have a chance to find love? Will I see my sister achieve her dreams? Will I be around to support my family in times of need? Will I see my friends get married and have children? Will I live, or will I die?
It’s incredibly difficult to contain a disease like this, so I understand the NHS needs to take drastic measures to handle the crisis. Our wonderful NHS workers can only do so much without the support and resources that are required to deliver the care system necessary not to endanger lives.
But, sometimes, living with a chronic illness can make you feel invisible. We carry on with daily lives hiding our internal struggles, constantly striving for normality, while our necessary care and treatment is cancelled left, right and centre. I want people to know that this is the real fallout of a virus like this, and this is the reality of a government who are not honest with us. And above all, this is the reality of underinvesting in the NHS.
As we self-isolate and get further into this, people like me will need the support, love and kindness of those around us. It doesn’t take a lot to check in if you have friends or family in a vulnerable situation. A text, a call, a FaceTime. Don’t underestimate the power of the smallest gesture to give people like me the will to survive.
Please don’t let us disappear.
Lara Wahab is an account manager at Wieden + Kennedy London. Follow her on Twitter at @wahabning.
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