Why I can’t remember the 16yrs before I had heart transplant
Nurse can’t even recall daughter’s birth
DIABETES nurse Melissa Wright spends her life looking after chronically ill patients and has completed two degrees.
Yet she has no memory of the first 16 years of her life – and cannot even remember what she had for lunch yesterday.
Her condition is a result of her being put on a heart machine while waiting for a transplant as a teenager.
While it saved her life, the unit damaged her brain – meaning she cannot remember things the rest of us take for granted.
And that includes milestone moments like the birth of daughter Jasmine, now 12.
Melissa, 32, said: “I have to plan my days like a military operation.
“Jasmine and I went on holiday to Somerset this week but I’ll have to look back at the photos to remember being there.
“I live my life through photos. I look back through photo albums from before we had mobile phones and I store everything on my phone and upload pictures to social media in case I lose it.
Lucky
“I have to take photos of everything I do and everywhere I go.
“I can’t remember song lyrics or even the artist, even if I recognise the song, or films I have watched multiple times.
“I love binge-watching shows but can’t tell you what has happened previously. If I watch it again, there will be scenes that spark recognition.
“It’s the same with books. I love reading but don’t remember them. It is quite good in a way, as I never get bored!
“It’s hard but I am lucky as I wouldn’t be alive without the transplant.”
Melissa, from Newton
Aycliffe, County Durham, was 15 when she was diagnosed with the blood cancer non-hodgkin lymphoma in
May 2005. Her gruelling chemotherapy left her with heart failure.
She said: “My only chance of survival was to have a heart transplant.
“After experiencing cancer, it was such a shock to be told that the treatment I’d thought was helping to make me better had irreparably damaged my heart.”
Doctors put Melissa on a
Berlin Heart machine to rest her own failing organ while she was waiting for a donor. She said: “It was a scary time. I didn’t know if a donor was going to be found in time to help me. My family thought they were going to lose me.”
Thankfully a month later, in February 2006, she had the operation and felt grateful to have a future.
But as Melissa got physically stronger, she realised that she couldn’t remember events from before the transplant.
She was eventually diagnosed with pumphead syndrome – a rare condition affecting people who have been kept alive by heart machines
Melissa said: “It was a weird feeling. I knew who my family and friends were but I couldn’t remember anything that I’d done in my life.
“I couldn’t remember holidays, going out with friends or going to school. There wasn’t a flicker of recognition at all, it was as though my whole memory had been erased. I thought it would get better and my memories would start coming back over the next months, but they never did.
“I had to look back through our family photo albums to see what my life had been like for the first 16 years.
“I was sitting my A-levels and before I would only have to read something once to remember it.
“I had been a clever student, with high grades. Now I couldn’t retain things.”
Despite her problems, Melissa went to university in Leeds to study law, graduating in 2013. She went home at weekends so that her mum could prepare her meals for the week and ensure she had her medication. While her memory was poor, she was able to learn skills through repetition so that they became instinctive, which enabled her to pass exams and drive a car.
She said: “There is a very short window of time that I retain information for, so for my exams I had to stay up for 24 hours beforehand, cramming information so that I could then sit the exam before I forgot it. “I recorded sessions and made lots of notes, which friends used to copy. They couldn’t believe how fast I wrote but I needed to!” When Melissa unexpectedly got pregnant 12 years ago, doctors had to monitor her closely due to her transplant status. While she remained in good health and Jasmine was delivered safely, Melissa cannot remember that period of time. She said: “I just have the
photos. I know it happened but I can’t tell you exactly what happened.”
Over time, she has found techniques to help manage her memory issues – keeping a paper diary and phone calendar packed with alarms and reminders for her work shifts and plans.
Methodical
She has also learned to set timers for every stage of cooking meals and use a memorable PIN for her bank accounts.
She said: “I have notes stuck all over my house and carry flashcards. I put reminders on my phone for jobs to do.
“When I cook Christmas dinner, I am very methodical and keep a list of timings as I can’t remember what time I put things in. But I do miss appointments and forget my medications, it’s hard to keep track.”
The single mum started dating a new boyfriend in April but kept her condition a secret until she was certain about him. She said: “When I forget things, he jokes and calls me his ‘little pumphead’. He is good at reminding me about appointments and medication. But I don’t remember how we met!”
She also gets plenty of help from her girl, saying: “Jasmine asks questions about when she was smaller and I don’t remember. Now she is older, she reminds me to do things. She is like a little mum.”
Melissa’s condition also inspired her to help others. After a stint as a carer, she trained as a nurse, qualifying in 2018.
She said: “I work hard to make being in hospital as nice as it can be for people, having spent so much time there myself.” In April, she started as a diabetes specialist
at Darlington Memorial Hospital. “If I have a complex case, I ring a colleague for help,” she said. “They are very understanding. Sometimes, my older patients joke about their poor memory and say, ‘One day it will be you.’ I think, ‘I’m already there!’” Melissa realised her foggy brain might be something more specific after reading about pumphead syndrome on a Facebook group for transplant survivors a year ago. She got her diagnosis after her GP consulted neurologists.
Unfortunately, very few studies have been done on the rare condition. She said: “When I researched it, it sounded like me. But a lot of people were struggling to get doctors to take it seriously.” Landing her dream job gave Melissa
the push to get answers about her issues and press doctors to find a cure – or ways she can cope better. She is waiting for an MRI scan and will see a neurologist.
“It hit me how hard it was to learn new things when I started my new job,” she said. “It’s a job I love and I always wanted but I feel behind on where I should be. Once I know it, I know it – but it takes a while. I shouldn’t have to just muddle on. I get assessed regularly at work, so it is unfair I might fall behind because of this.”
But despite all of this, Melissa does not regret for a second having had the heart transplant.
She said: “It would be nice to have proper memories and not feel foggy but I feel proud of everything I have achieved.
“And I got a second chance at life, even if I have to remember it through photos, so I’ll be forever grateful to my donor.”
I have notes stuck all over my house and carry flashcards