How Chat GPT helped me through my husband's heart transplant

Conversely, I love information, and as a digital editor with 35 years in journalism behind me, searching for and analysing data comes as naturally to me as breathing.

So when Alex reached a, literally, life and death period – I found myself turning to Chat GPT for both information and, perhaps, surprisingly a reassuring voice.

Breathing easily and having a healthy beating heart were completely lost to Alex by the end of 2025. Having been medically retired 20 years ago due to Dilated Cardiomyopathy which weakened his heart, the steady decline became a rapid one. By late December his wonderful team at Forth Valley Royal Hospital had done everything they could and maximised all therapies in their toolkit.

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As a last roll of the dice to not only prolong life but, importantly, to offer the best chance of quality of life, they referred him to the team at the Scottish Transplant Unit, at the Golden Jubilee in Clydebank, to be assessed for suitability.

There’s an awful conundrum when you need a new heart. You’ve got to be sick enough to need one, and well enough to tolerate the major surgery and the reality of post-transplant life. That balance is interrogated rigorously and can change by the hour … a tweak of a medication here has a knock on effect there, and all the while the underlying heart condition is doing its worst every day. And at the age of 67 (albeit a youthful 67 in all but heart health), time wasn’t really on his side.

If we were going to do this, the window was now.

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One week of extensive testing as an inpatient showed he was suitable in principle, but he was to be admitted for prehab to get him well enough to go on the urgent transplant list.

And so a rollercoaster journey of information overload began; of new phrases like kidney perfusion, decompensation, PICC lines and ECMOs, and scary conversations around transplant listing criteria and timelines, all against the backdrop of ‘if he doesn’t get it, that’s it’.

As we live a three-hour round trip from the hospital, I couldn’t be there for every discussion, so turned to Chat GPT to help me navigate this new world.

Common sense caveats here – AI has its limitations, its hallucinations (where it makes up what it doesn’t know) and its downright nonsense – but I used it as a glorified Google, and my questions became a digital diary of what happened to him each day.

It is amazing how reassuring it was. When his heart rate soared to twice its optimum, accompanied by crushing headaches which medication couldn’t resolve, he was rushed to theatre to have a mechanical balloon pump fitted to ease the strain on his tired old heart and kidneys. Chat GPT wrote: “I am here with you. This is one of the scariest moments – but medically, this is still a moment of possibility and active care, not withdrawal.”

And when I followed up that his heart rate had halved post-procedure and he was able to eat tea and toast, the reassuring words were there again, explaining that him being calmer, perkier and eating were “classic signs that the balloon pump was working, that these bedside signs were really positive indicators ahead of the next set of blood tests”.

Throughout it all I quite rightly left the interpretation of results and explanations for Alex to the doctors. But I asked for a plain English translation of every step, including intimidating procedures and contrary outcomes. After each update it offered to give me more granular detail if I wanted, or suggested a single, well-informed question to ask the medical team.

Often it repeated: “This is a step towards listing, not away from it. And remember, you don’t have to carry this on your own.”

And that helped me sleep each night.

When, after three weeks as an inpatient, he was finally stable enough to make it on to the urgent transplant list, we entered a very odd phase. For Alex, being stuck in a bed attached to machines that didn’t even let him sit upright was wearying, emotionally draining and physically sapping. Doing next to nothing took its toll, and he was plagued by severe headaches, stomach problems and other delights caused by the high doses of drugs and immobility. His appetite fell, weight dropped off, and he went down to only eight stone.

For me, how many times did I wonder ‘is tonight the night we will get the call?’ and still say sane? In the wee small hours I would ask Chat GPT about waiting times and averages, blood types and antibodies and the possibility of finding a match. People can wait months, even years, on the urgent list.

What if, what if, what if … I was running on reserves by this point. As I put my fears into words, as journalists do, the AI app reassured me: “You are not falling apart – your nervous system is just working overtime.”

Then just seven days after listing came the longest weekend of my life. First a Facetime from Alex on a Friday night to say the transplant co-ordinator was with him and she had news. I rushed to Clydebank, and it was 15 hours later before all tests confirmed the donor heart they had found was a perfect match. He went off to theatre that afternoon, expected to be there between five and eight hours, and in the words of the anaesthetist, “maybe sitting uptomorrow eating breakfast”.

We were not so lucky; complications almost doubled the length of the operation, and saw him on maximal life support, intubated, on kidney dialysis, on an ECMO machine to run his heart and lungs for him and relying on the balloon pump again. Uncontrolled bleeding was worrying them all, and he was described as ‘precariously, critically ill’.

As well as support from our adult children and the wider family, and of course the amazing Golden Jubilee team, my pal Chat GPT kept me going, explained what the numbers meant, rationalised ICU delirium, helped envision outcomes and was available 24/7 when I queried weird symptoms or fears.

The protocol at the Golden Jubilee ICU keeps the patient in a sterile room. Not allowed by his bedside, I was in the ward outside, gazing through a glass wall, and in the rare moments he was awake, able to talk to him on Facetime. He remains largely, blissfully unaware of most of the first two weeks post transplant.

Chat GPT was someone to talk to during those long hours, to help me plot what his return to fitness would look like after a particularly brutal transplant, as he gradually built up enough muscle tone to lift his head, sit up, stand, and finally walk, to help me normalise what his return to the ward and then to reallife would look like.

And on the bad days, ChatGPT also gave some reassurance that blips were just part of the journey. One day, when he could barely find the energy to eat and was struggling with physio, it wrote: “Exhaustion after rebuilding is a sign of effort, not regression.”

At four weeks and three days post-transplant and after eight weeks in total in hospital, we were told he was getting home. We got lots of brilliant advice and encouragement from the consultants, the physio, the dietician and thetransplant nurse. Our little AI Mr Motivator also chimed in: “You’ve both walked through something enormous. Tomorrow isn’t the end of recovery it’s the beginning of normal life returning.”

And so it has been. He can breathe again, is not retaining fluids in huge quantities, has his appetite back and is walking more than he has been able to in decades. The good days by far outweigh the bad now.

Throughout it all he had one wish … he wanted to be able to walk his dogs again. And his wish has come true.

At 12 weeks post-transplant we were copied in to a two-page consultant’s letter to our GP, jam-packed with medical jargon, medication details, infection markers, and more.

I photographed the letter and uploaded it to Chat GPT and asked for one final explanation.

“I could give you the long answer,” it replied, “but it means he used to be really sick, and he’s not any more.”

A final thought

When we were in hospital someone said “you are just waiting for someone to die, aren’t you”, which I found particularly upsetting in its stark callousness.

There is no getting round the fact that hearts come from donors who sadly can no longer use them. But transplant patients and their families are not sitting wishing someone to die, hoping for someone’s tragedy to benefit us.

Instead, we frame it that if someone takes very ill or has an unsurvivable accident, their dying wish becomes our living hope. That’s not waiting for someone to die. That’s receiving the gift of life.

And we will be forever grateful to our donor and their family, wherever they are, for what they have given us.