Mandy lived well with Primary Biliary Cholangitis for 17 years, until 2002 when two tumours were found on her liver. Thank you for sharing your story, Mandy
I was diagnosed with Primary Biliary Cholangitis in 2007 and didn’t experience any symptoms before that or over the next 17 years. After being put on medication for the PBC my bloods were always normal. I had an annual screening for cancer as I learnt that with my condition I was predisposed to liver tumours. I also went for liver scans annually at my local hospital in Stoke on Trent and was clear until 2022 where one, then two, tumours were found.
I was told a liver transplant was the only route for me which was totally shocking as I felt normal. I underwent chemotherapy with a procedure called TACE to bridge some time while on the waiting list for a transplant and again had little symptoms post chemo (I was lucky, I guess).
I then received THE call early in 2023, four months after going on the transplant list and with a few previous false alarms I went for surgery to the Queen Elizabeth hospital in Birmingham. My donor was a person who had suddenly died and with my previous profession as an intensive care physiotherapist I knew such donors are like gold dust. I questioned the surgeon doing my operation “How come I’m getting this liver?” and the answer was astonishing. He/she said: “Your liver is recycled”. So I was receiving an organ from someone who had been a transplant patient.
Quoting my father as to whether to accept this organ was an ‘an enigma wrapped up in a dilemma’.
What were the added risks? What of the increase in antibodies as this liver had travelled through two other people before coming to me? Have I now three armies of antibodies fighting this organ? No-one could answer the questions easily as available data is scarce as only 10 other people world-wide had undergone this surgery.
Liver tumours
The medical staff were reassuring in explaining that all eventualities could be treated with medication and they would be super-vigilant in my case. My family and I discussed the situation and we all came to the conclusion that I was super-fit for surgery and if there were to be any problems, I was well equipped to deal with them. So we agreed to go ahead. Alarmingly another tumour was found during the operation – my liver was a ‘tumour-making machine’ and so I would have deteriorated very quickly without the transplant so the timing was perfect.
I am reluctant to know how the other 10 patients are getting along health wise. It’s such a low number of case studies and statistically I’m not sure if they are in my favour.
Surgery went extremely well, hospitalisation didn’t bother me as I am so familiar with the environment including ICU. I was totally at ease with the monitors, procedures and if I, as a chest physiotherapist, could not manage my own physio…simply no excuse. So I self-administered all the physical therapy and, quoting my children, ‘You smashed it, Mum’.
I’m not saying it has been an easy journey, the anti-rejection meds have their own risks and this is the price you pay to stay alive.
I have been readmitted with gastro-enteritis, self-inflicted with food poisoning we think, from my French husband’s cooking! There was another admission in August, scarily, I was not unwell at all, but my bloods were not right. A biopsy revealed severe rejection which was treated very successfully with Prednisolone. What a way to spend my 66th birthday! More recently I had a potential problem with kennel cough, but that is another story.
Being the owner of a ‘pre-loved’ organ I am acutely aware of the lack of available, useable organs
Being the owner of a ‘pre-loved’ organ I am acutely aware of the lack of available, useable organs and the process needed to get there. Through working in ICU I have treated heart, lung and kidney transplants (recipients?) and helped ‘keep alive’ people who are potential organ donors by doing chest physiotherapy.
I have since met many organ recipients when I attended the British Transplant Games in Coventry in 2023 as a spectator. I also went to a golfing event at the Warwickshire golf club with my son, where I had the pleasure of meeting like-minded folk all with amazing stories to tell. I have set up a Golfing Society based in the Midlands called the Mulligans – a term used in golf to give you a second chance. We had our inaugural Golf Day in May this year and attendees consisted of transplantees, people who had donated organs as a live donor but also family members who had donated their loved one’s organs when they died. It was all very levelling and not a dry eye in sight. There has been a lot of interest nationally and I would like to set up golf societies to represent every corner of the UK.
The anniversary of my operation rendered me very emotional as I reflected on the families mourning the anniversary of the death of their loved ones, but as one of the consultants said: ‘Remember they volunteered to donate their organs’.
I plan also to rekindle my love for squash as I am a regular racquet ball player and maybe enter the Transplant Games in the over-60s category, paracetamol on hand!
Organ donor wishes
In summary, I would say the case of all people who have received organs there is no easy way to show your appreciation because of the trauma other people have endured. The least I can do is help to spread the word as I also know how many people, young and old die whilst waiting on the transplant list.
I’ve also learnt that despite the National Mandate where we are all donors unless we opt out that families can still reverse that policy simply because they are unaware of what their loved ones would have wanted. The message here is: tell your family your wishes and spare them the heartache of making that decision.
I have been lucky from the start and I will never undervalue the team, the process and the outcome.
On each anniversary of my transplant I will be happy but equally sensitive to the two families who are remembering their loved one. I was widowed 33 years ago and July 21st is still a poignant day for me.
But now, hopefully, I have a long life ahead and a duty to perform.