AN Annan family have shared their rollercoaster heart transplant journey in the hope of encouraging others to become donors and save lives.
Lucy Smith, 22, is now recovering well from a transplant at Glasgow’s Golden Jubilee Hospital nearly three weeks ago.
But it’s been a rocky ride over the last few months as her health has deteriorated.
The first sign anything was wrong was in 2022 when she was found to have high blood pressure, with doctors putting it down to stress and prescribing medication.
Mum Ashley said: “Lucy kind of got used to the way things were for her and compensated life fairly well.
“She worked full time in a care home doing 12 hour shifts, but would then spend the rest of her days in bed or doing very little. This went on for a long time.
“Lucy’s mental health suffered and frequently she would complain of palpitations/racing heart. Some days were better than others.”
Fast forward to the beginning of this year and Ashley and husband Robert noticed their daughter was less bothered to do anything: “When plans were made with friends she would become more anxious as the day approached.
“Her complexion wasn’t great too, she could be very yellow tinged.”
After working 36 hours in three days, Lucy couldn’t get out of bed so Ashley took her to the GP with fatigue and pain.
An ECG detected she had an extra heartbeat and ectopic heart rhythm and Lucy described pain in her side radiating through to her back and when inhaling.
However, the doctors were not unduly concerned as she was so young and signed her off work to rest.
Ashley continued: “On April 3 Lucy’s symptoms were getting worse. She wasn’t sleeping for the pain
and struggling to breath properly without chest pain.”
That night they went to Dumfries and Galloway Royal Infirmary, where it was found her heart rate was 146 bpm.
More ECGs were done and she was given medication but couldn’t keep fluids down and was getting progressively more yellow.
“Things seemed to be getting worse,” said Ashley.
“She was sitting on the toilet floor being sick bile, her pain was off the scale.”
Following an echocardiogram and CT scan, they were given the “most horrific news” that Lucy was in heart failure.
Her diagnosis was dilated cardiomyopathy but doctors hoped it could be sorted with three months of medication.
Four days later, however, Lucy had deteriorated to the point her heart required the support of an IABP (intra-aortic balloon pump) to help pump blood around the body.
At this stage she was added to the heart transplant waiting list and was showing a slight improvement, although she was confined to her bed with it set at a strict angle.
The respite didn’t last and by April 12 her sickness and pain had returned as she suffered a reaction to a blood thinning drug.
Transplant plans were paused and a course of plasma pharesis was given, with a machine used to carry out a plasma exchange.
They were further delayed when Lucy developed two back-to-back infections. Ashley said: “She had so much plastic in her body the risk of infection was always high.
“Each day I would silently break my heart behind my mask and all Lucy kept saying was ‘It’s ok mummy I’m just tired, so I’ve named her journal this.”
The next hurdle was the discovery of thrombosis on her spleen, kidneys and foot, as well as an aneurism in her groin.
Lucy ended up in intensive care as her heart deteriorated further, with Ashley saying: “Blood wasn’t going to all her other organs, she was now the sickest she’s ever been.”
Another operation was necessary for an extracorporeal membrane oxygenation machine to be fitted to do the work of the heart and lungs.
Doctors had done all they could and so Lucy was added to the urgent transplant waiting list on April 30.
She only had four days to wait and her life-saving surgery went ahead on Saturday May 4.
It was the longest eight hours of the family’s life and, once again, things didn’t go smoothly, as Ashley explained: “Afterwards the surgeon called to speak to us. Our hearts were shattered and we dreaded to hear what he had to say.
“Basically the donor heart was stunned, which meant Lucy still needed the support from Ecmo and the balloon pump after her surgery.”
She remained ventilated for six days afterwards but sedation breaks meant Ashley could call her beloved daughter. She said: “As her mum, I’ve never experienced hopelessness like it ever before. I would have done whatever it took.”
Lucy is now on her seventh week in hospital and there’s finally hope in sight.
Her recovery is on track and intensive physio is building up her strength.
Said Ashley: “Soon enough she’ll be ready to go and live her life – doctors are talking about discharge this week, all being well.
“She can’t wait to start living life feeling healthy with a brand new heart.
“We are looking forward with a positive outlook on life and not taking things for granted.”
In future, they might ask about the donor but for now the priority is getting Lucy well again.
“When we are ready we would love to thank the donor’s family, they have given us the best gift in life,” said a grateful Ashley.
“We know someone has had to lose their life for Lucy’s to be saved, but they have given her a new heart and a brand new life.
“There are so many people living and waiting just like Lucy – so make a difference and save lives.”
