Heather Bluer’s life changed dramatically when she was left totally bed-bound and in constant agony after initially believing she was just experiencing intense anxiety
A mum who had regular panic attacks and was always been prone to chest infections thought she had anxiety – but she actually had a rare and life-changing genetic condition.
When Heather Bluer began experiencing mysterious symptoms similar to panic attacks during the Covid-19 pandemic, Heather knew something was amiss, an she was right – it turned out she had alpha-1 antitrypsin deficiency, which affects both the lungs and liver.
“I shielded very strictly in lockdown, once it had passed and I began to socialise and reintegrate, I started having what we thought were panic attacks,” shared Heather, a 45 year old solicitor from Bolton. “I’d have them in the supermarket, for example.”
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She told the Manchester Evening News: “I felt as though I couldn’t breathe and assumed they were being brought on by challenges I was having in my personal life and the shock of reintegrating into society.”
“I had been losing a lot of weight and became very unwell, almost crippled by anxiety, to the point where my boss told me to take some time off and seek medical advice.
“At first my GP treated me for anxiety and depression. I reluctantly accepted medication but rapidly became more unwell with various other symptoms, I was a mess and hadn’t been able to leave the house for eight weeks.
“I told my GP I didn’t feel it was a mental illness and refused to take any more medication, insisting on further tests. I actually said to the GP I think I’m dying.”
Additional tests uncovered the chilling reason behind her panic attacks – she was running dangerously low on oxygen. Following one alarming result, Heather was rushed to hospital without delay.
“After getting a heart scan, by which point I was in a wheelchair because I could no longer walk from the swelling, they told me the right-hand side of my heart was enlarged and leaking,” said Heather.
“They believed this was being triggered by the problems with my lungs. After checking my oxygen saturation levels, which were so critically low they were incompatible with life, I was immediately admitted, placed into a bed and connected to various machines and oxygen.
“The panic attacks hadn’t been brought on by stress or anxiety, it was because I was so physically unwell and my oxygen levels were so low I actually couldn’t breathe which made me panic.”
Heather received the devastating news that she required a heart and double lung transplant. However, it was ultimately determined that with a double lung transplant, her heart would heal itself with proper medication.
Her deteriorating condition meant it took longer than normal to be added to the transplant list. Over the following two years her health dramatically worsened.
Heather became entirely bedridden and needed round-the-clock carers whilst attempting to bring up her two youngsters. “A couple of times I was given 48 hours to live, I caught Covid a few times and life was generally very grim,” shared Heather.
“I struggle to remember a lot of it as I was on such high levels of morphine, but I will never forget the feeling of each day wondering ‘will today be the day I die’. Every day was just a case of ticking another one off.”
“I never verbalised the idea of dying as that would have made it become more real, but I was definitely aware of the reality of my situation – even if I was never outright told I was actually on end of life care.”
Heather’s health crisis devastated her loved ones. She said: “It was horrendous for my family and friends, I knew it was difficult for them but you’re so unwell your view of the world is very selfish as you’re just trying to survive.
“As amazing as they are, they could never fully understand just how it feels to fight for every breath and think is this my last. The demands I put on them must have been horrific, especially on top of other commitments they had.
“My then-13-year old-daughter was regularly drawing up my morphine and called 999 late at night more than once. My parents were my primary support, it’s only now I can reflect and I cannot begin to imagine what it must have been like for them.”
Eventually, at 2.15pm on June 19, 2024, Heather received the life-changing call that a donor had become available and she needed to reach Wythenshawe Hospital immediately.
Heather was being rushed to Manchester’s world-renowned Heart and Lung Transplant Centre. The facility is one of only five specialist centres in the UK offering adult heart and lung transplantation, and the only one serving patients in the north west of England.
Just over 12 hours after receiving the call, she was in surgery. “I have such limited recollection of the whole day, I just remember thinking ‘f****** hell this is it’ – it didn’t seem real,” said Heather.
“I genuinely thought I was being wheeled to my death as I’d always believed I would not survive surgery, despite never verbalising that to anyone. All I remember is the call and then coming round in the intensive care unit to a nurse saying my name and asking me to open my eyes.
“It was only following surgery did I learn I had a matter of days left to live if I hadn’t received my transplant.” It was a really strange feeling, I questioned whether I was actually alive or had instead died.
“But there was also an overwhelming feeling of guilt, someone had to die for me to live, and I carry this with me to date.” As Heather continues to wrestle with the complicated emotions that can arise from having such a life-changing experience, she says her ‘transplant family’ have always been there – even when she was ‘screaming in agony at 3am’. “I was in safe hands, every single member of staff was incredible with me, there is not enough praise I can give them,” she said.
“Somebody said to me at the start of the journey regarding that you become part of the transplant family, which I only now fully appreciate.
“You absolutely do, they’re there for the ups and downs, they’re there when you’re screaming in agony at 3am, they’re the ones holding your hand, wiping your tears, pushing you, washing you and helping you go to the toilet.
“Many of them will know more in some ways than my friends and family as you try not to tell loved ones everything in an attempt to protect them. They get you through the darkest and scariest of times.
“They’re not just doing a job, it’s clear they genuinely care and it’s not a job to those people – it’s a life. How they do what they do I will never know, little things often showed their level of genuine empathy and care, like remembering how you have your tea or how I want the door open at night.”
Heather’s life was transformed by her transplant, sparking a newfound zest for life, but she soon realised that she was at the beginning of a lengthy recovery journey. “Once I had my new lungs, having been on end-of-life care, my attitude was just to get back out into the world and get on with life, so I pushed to leave hospital quickly. I understand now why they wanted to keep me longer,” Heather explained.
“Having a transplant isn’t the cure, it’s a treatment and needs to be managed and cared for the rest of my time. There are restrictions and side effects caused by my medication regiment, there are always hospital trips, I can’t go out in the sun due to risk of skin cancer and so on, it’s a lifelong commitment to a new normality but a very small price to pay for life!”.
“What it has given me is a greater value of the little things, I get to see my amazing children grow up and see milestones I never thought possible.
“Until recently I had never seen my son play football, I can take my daughter shopping, I can enjoy eating without issue, I can see family and friends without them being my carers. I get to be a mum again! 12 months ago I never would have thought this possible.
“I am alive and this is thanks to not only the amazing team at Wythenshawe but the incredible gift of life from my donor and their amazing family, debts that I can never begin to repay.
“I tell my story not for sympathy or pity, but to raise awareness of the amazing job the Wythenshawe Heart and Lung Transplant Centre do and raise awareness on organ donation. If someone reading this can save just one life, it’s worth doing.” Becoming an organ donor takes just minutes – with further details available at www.organdonation.nhs.uk or via the NHS App.