My new lungs don’t work any more — and I can’t bear to tell my donor’s family
Heartbreaking story that reveals the agony of being a transplant patient
There are more than 6,500 people waiting desperately for an organ transplant, and at least 450 die each year without receiving one. Next week, a private members’ bill will be presented to Parliament, proposing a controversial opt- out system, where everyone will be presumed to have consented to organ donation.
Stacie Pridden, 26, a student from Swindon, waited for three years before undergoing a rare heart and double lung transplant two years ago. In heartbreaking diary extracts, she reveals her agony and what she thinks of the new proposal. The voice on the other end of the phone gently tells me to take a deep breath: ‘We have a match, Stacie. We’re sending a car and it will be there in 20 minutes.’
I’ve been waiting for this for 889 days. I’ve had this call twice before, and they were false alarms, so I’m trying not to get too excited — it’s difficult knowing this could give me the normal life I’ve prayed for.
I call my twin sister, Megan, and she rushes over, picking Mum up from work on her way. The three of us make the twohour trip to Papworth hospital, where staff rush to get me prepped for surgery.
They take blood samples and fill out tonnes of paperwork — then I wait to be called in, trying to distract myself with my phone. But all I can think about is the possibility that in a few hours, I’ll be able to breathe painlessly for the first time.
Before I have time to enjoy the fantasies of what I could do with my new heart and lungs, the transplant co-ordinator returns: ‘I’m sorry, it’s not going to happen,’ he says, quietly. The donor heart has coronary artery disease and is unusable.
With that, my own heart starts to thump painfully and tears stream down my face — without a transplant, I will die, and I’m deteriorating with each breath.
I’M DESPERATE NOT TO DIE
RECENTLY, someone said: ‘It must be like waiting for christmas?’ No. christmas is inevitable; there are no ifs, maybes or false alarms.
Waiting for a transplant is an impossible lottery. The prize is getting to live normally — but whether you win or not is out of your hands.
I was diagnosed with pulmonary hypertension aged 11, as a result of being born with three holes in my heart. There’s high blood pressure in the arteries in my lungs and it can’t be treated. My life has been filled with hospital appointments, drugs to try and operations. even with these, we knew I would need a transplant one day.
As children, my parents kept me and my sisters, Megan and candice, very active — we’d go for long walks in the hilly countryside. I went at my slower pace, but at least I managed.
Now, I can only walk a few steps, then I need to sit down. I need a lot of help with tasks like washing and brushing my hair.
It’s been more than six months since my third false alarm and my death feels closer than ever. every heartbeat feels like it’s banging against my ribcage, causing pain that makes me wince.
I’m out of breath all the time and reliant on my oxygen tank — it feels like my lungs are too big for my chest. Doctors never expected me to live to see 15, then 18, then 21 — whatever the next birthday was. I thought I’d accepted death, but it is becoming more real. I don’t want to die.
Tonight, Mum has come to say goodnight. She can tell I’m not myself and asks if I’m all right. I burst into tears. She holds me, and I cry in her arms for an hour. She stays with me until I fall asleep.
I’m online a few days later asking people if they know anyone who had a transplant for both heart and lungs. clearly, I like to torture myself. Between 2014/2015, there’s been just one. It’s my only hope of survival, yet here I am, three years later, still waiting. I can’t help but feel my ship has sailed.
I’m not here to tell you to be donors, but I think anyone willing to take organs should give them. When I die, I’d like to donate any organs that are good enough.
MPs are thinking about an optout system where everyone is a potential donor unless they say otherwise. While anything that improves donor numbers can only be good, I can’t help but think it needs to be a personal decision. I’d feel honoured getting organs from someone who chose to save me.
I WAITED 1,135 DAYS
IT’S 4.30am on a Saturday and I’ve just finished an evening of revision for the first year of my history degree at The Open University.
My phone rings. I don’t answer as, at this time of night, it’s probably a weirdo. But it’s a voicemail. ‘hi, it’s helen from Papworth. We have a match. you need to ring me back as soon as possible.’ I feel the familiar goosebumps on my arms and quiver in my chest.
helen says that I have 30 minutes to get ready before the ambulance is here. I call my transplant waiting list friends Bernice and Kath and post a Facebook status telling everyone I’ve had The call and to keep everything crossed for me.
Mum and I are blue-lighted to hospital. I feel fluttery excitement in my gut, but refuse to get my hopes up. I’m petrified it will fail.
After tests, two hours pass and the transplant co-ordinator David comes with a wheelchair and says: ‘We’re going.’ I say bye to Mum, but don’t cry so I don’t set her off. I’m the most scared I’ve ever been. I’ve been waiting for this moment for more than 1,135 days. I lie on the table, grip David’s hand and tell him to take care of Mum. Then I cry as they put me to sleep.
A NEW BEGINNING?
I WAKE after the six-hour surgery with Mum and Dad holding each hand. My lungs were in such bad shape that they had to rip them out in bits. Who knows how much longer they would have lasted?
The day after, I am well enough to stand. I thought I’d be down for weeks, but my body clearly refuses to be held back for any longer. I’m walking around unaided within 48 hours, surprising the nurses with my stubborn will to get moving.
The biggest difference is the pain. Before surgery, I ran at a pain scale of 8/9, but now I’m painfree. I go home after two weeks: it’s the small things I appreciate.
Being able to breathe silently is more exciting than you’d think, as is getting changed without stopping to catch my breath, walking up stairs, and not sitting attached to an oxygen tank for hours.
People keep asking what I’m doing next. I’ve been focusing on staying alive, so I don’t have a clue. I’ll start by finishing my degree and then I want to go abroad, something I’ve never done as an adult.
A HOLIDAY AT LAST
A YEAR after my transplant, I go on a week-long holiday to Portugal with my boyfriend, Mark. It’s unbelievably exciting — I swim for the first time and climb a steep hill. It’s an incredible achievement, all thanks to these new organs.
IT’S ALL GOING WRONG
I’Ve caught a bug and my breathlessness has returned. I’ve lost about 35 per cent of my lung function (I started off with 81 per cent after the transplant). It’s still more than I have had pre-transplant, but it is deteriorating rapidly.
Doctors say my body is rejecting the lungs, but don’t know why. I’m devastated. The only treatment is another lung transplant, so I’m back on the transplant list.
I don’t fancy my chances; only two double lung transplants on top of an already transplanted heart have ever been done. One survived and the other died, so the odds are a bit rubbish. life was handed to me after so long, and now it’s slowly being ripped away. It’s the most awful pain I’ve ever felt.
I can’t breathe unaided, I don’t eat much as swallowing is so hard and even my hair is falling out. I’m in constant pain that only the strongest morphine will help.
MY DONOR’S LETTER
ALMOST 18 months since my transplant, I receive a letter from a man whose wife’s organs I have. I can’t reply. What would I say? I feel responsible for the lungs not working and have clearly failed this family. It’s an amazing letter, though, and she sounds lovely. I know her name, what kind of family she had, her job and what she enjoyed. I hope I can get more time out of the lungs, for her sake.
everything is so hard now. My health is in such a bad state that doctors have taken me off the transplant list, as they don’t think I would survive surgery. I guess donor organs are so precious, they wouldn’t want to waste more on someone as ill as me.
I’m glad I have Mark, Mum and Dad helping me. From taking my list of medicines to getting dressed and showered each morning, they do it all. I said the other day that I wished I could go back to normal and it made me sad that actually being ill is my normal. I know I’m dying, and it’s exhausting.
ADAPTED by JINAN HARB from lifeisworththefight.co.uk Stacie is fundraising for a new wheelchair: crowdfunder.co.uk/ lifeisworththefight
MY PAINFUL FALSE ALARMS