A lovely holiday in the Mediterranean took a frightening turn for Carole when, over the space of 48 hours, she went from feeling she had heatstroke, to full-blown liver failure. Thank you for sharing your story, Carole
My story is a little different but may resonate with anyone who didn’t have liver disease but acute liver failure and a super-urgent transplant.
Previous to July 2023, I was a pretty healthy 53-year-old with stable asthma and coming to the later end of menopause. I had gained some weight but was active as an off-shore sailor with my husband and enjoyed exploring beautiful places across the Mediterranean.
Then I got sick, very sick, very quickly. Over the course of 48 hours I went from feeling I had heat stroke to full-blown acute liver failure and the cause is still unknown. I was rushed to hospital in Alghero, Sardinia, and onward by helicopter to the university hospital in Cagliari on the south of the island (and a three-hour drive for my husband who was told follow on by road).
Urgent transplant needed
There they tested me for everything they could and found no answers. I was going downhill rapidly and it became clear my only chance was a transplant, either in Sardinia or a medical evacuation to UK. Thank heavens for GHIC (the UK’s reciprocal health agreement with EU) which covered all my emergency care and would have covered a transplant in Sardinia. We had excellent travel insurance and after a few niggles (proving I hadn’t withheld an existing condition) they arranged an ICU-equipped flight back to the UK and I went straight into ICU at Addenbrookes – ironically where I’d worked as a nurse for 20 years!
The team were waiting for me and they were amazing and reassuring. They had all my notes and scans from Cagliari, did more tests and then listed me. A liver was found within 48 hours (my window of opportunity) and I had my transplant.
I spent the next week sedated in ICU so my memory is a bit scattered, but I recommend a follow-up visit with the ICU team once you have recovered – it really helped me piece my journey together. I had two further weeks on transplant HDU due to infections, which included my birthday and I still have the video of the staff singing me Happy Birthday and presenting me with a birthday card signed by them all. It made a tough time just a bit easier, as did the foot massage from a student nurse later in the day, after her shift.
My old liver has been given to research, I am still none the wiser as to what caused my failure as all tests have returned negative results, the best guess is some kind of immune system reaction to a food poisoning virus or toxin.
I had a couple more weeks on the ward followed with physios persuading my muscles back into action before I continued the rehab work at home with a fabulous personal trainer – I now go to the gym three times a week for guided fitness.
I’ve had two episodes of rejection and have just had my incisional hernia repaired. My first rejection episode came only 12 weeks after my transplant and was treated with high doses of steroids, these came with their own side effects so when I had a second rejection this year, the transplant team tried really hard to manage it with adjusting my anti-rejection meds only. This worked briefly but a biopsy taken during my hernia repair showed I needed the steroids again, which are doing the job and the side effects are better managed this time, so I’m onwards and upwards now. I went back to sailing 11 months after my transplant and will be again as soon as I’m cleared after this surgery recovery. I am also back working in a non-patient facing education and coaching nursing role.
Lifesaving donation
My old liver has been given to research, I am still none the wiser as to what caused my failure as all tests have returned negative results, the best guess is some kind of immune system reaction to a food poisoning virus or toxin.
I think of that night – 7th July 2023 – every day, I got a new chance to live while my donor family had to make the most difficult decision to respect their loved ones wishes and allow their organs to save more than just my life.
My family have been absolute stars – they had to watch the trauma unfold and be there and be strong for me every step of the way. The online peer support groups I’ve joined have been a great place to ask questions and find answers. And as for the transplant team, just what can you say, their dedication and work they do is phenomenal!
