The care of our minds and bodies needs a lot of trust as we hand ourselves over to the medical professionals. We trust our doctors and their diagnoses, then the referrals, the specialists, consultants. Some move on to surgeons – and anaesthetists, scrub nurses, runners, theatre technicians, and perfusionists. On the other side of the operating theatre is a place of intensive care. Whatever the name it goes by, here is care, therapy, that is just that, intensive, every minute of every hour of every day. It may be a few days or much longer. There is skill and art in paying attention, focusing compassion primarily on the patient, and also on family, friends. The nurses may come from many countries, often with English as a second language, but the language they must all learn, or perfect, is, to borrow the title of a beautiful book by former nurse Christie Watson, “the language of kindness”. Today’s insight is from a member of a team who speak that language with excellence.
I remember witnessing my first transplant, peering from a stool at the edge of the transplant theatre. I watched in wonder as the skilled surgeons carefully, painstakingly removed the old damaged organ from the patient asleep on the table. They connected new arteries to old and this new liver, pale initially, blushed pink and healthy as their blood flowed through this new part of them.
I began working as a critical care, post-transplant nurse 4 short years ago and now work in a Liver Intensive Therapy Unit with post-transplant patients.
When most patients first come to us they are wheeled around by the surgical team straight from theatre– normally an operating department practitioner and an anaesthetist. At this point, these specialists have been operating for about 7 to 8 hours. They must be exhausted but they remain completely focused until our new patient is fully handed over to us.
Our patients are always asleep, sedated with a cocktail of painkillers and sedatives to ensure their safety and comfort at this precarious time. We connect the patient to our monitors: leads for heart rate monitoring, oxygen levels, blood pressure, respiratory rate. They are connected to our ventilators via a breathing tube in their mouth. We talk to them now, calling them by name, reassuring them, having been expecting them since the operation started. We swab them for infections, check their dressings, ensure their medications are just right to help carry them through this momentous time.
We check blood results and replace what might be needed: bags of red blood dripping slowly into cannula, or yellowish platelets to help our new patient make the clots they need to heal from the surgery – all donated by the generous public who so rarely see what a tremendous role their kind donations play.
Gently, we carry them through the next few hours and sometimes days, supporting their bodies to take the time to heal. And now we start to reduce the sedation, allowing their eyes to open. We tell them where they are, why they’re here, how their family are. We use their names, calling them back to wakefulness. Gradually at first, a squeeze of a hand, a nod of the head then brighter and brighter until finally we can take out the breathing tube and we get to hear their voices for the first time.
Swelling reduces now, expanded tummies deflate, wounds scab and heal, while inside with greater and greater certainty this new organ is becoming part of them.
In a matter of days, often, our patients are transferred to the ward to continue their recovery. Sometimes they return to visit us, walking in to us now, heads high, skin clear and glowing, smiles radiant. We barely recognise them, so dramatic is the change.
A year goes by and sometimes a card arrives, marking their anniversary of this new chance at life. Pictures show smiling faces and time spent with loved ones.
This is why we do what we do. This is the miracle of transplantation: the gift of time.
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Despite the almost countless number of times I have delivered post-transplant care, I still find it astonishing. It is still remarkable to me how sometimes, mere hours after a transplant, we can wake someone up, remove the breathing tube and have them sitting in a chair the following day. More remarkable still is the change in patients once the transplant is received. Liver failure has some especially disruptive symptoms: ascites (fluid swelling in the abdomen) can require regular drainage through an incision in the skin, requiring frequent hospital appointments. I’ve heard of patients having two wardrobes: one for when their ascites is present and one for when it isn’t. This fluid presses on a patient’s lungs and makes doing just the normal day to day activities we take for granted exhausting. Patients may develop jaundice, turning their skin and eyes yellow and often creating an unbearable, insatiable itch all over. Sometimes patients can develop encephalopathy, described like a ‘brain fog’, putting these people at risk of falls and making things like holding down a job challenging. The quality of life benefits of receiving a liver transplant can be tremendous, allowing people to re-join society in a way that their symptoms had inhibited. Outwardly, patients are often simply unrecognisable following their surgery. I remember a woman walking on to the ward and calling my name and I had no idea who she was. After studying her face, it twigged and I realised she’d been a post-transplant patient of mine! She seemed a new woman.
I have had many touching moments with the transplant community. On one particularly surprising occasion I was enjoying dinner at home with my housemate and a friend of his, the conversation turned to where we worked and the jobs we do. When I mentioned my role in the Liver ITU the gentleman across from me grabbed my hand, his face full of emotion. He went on to explain that by coincidence his daughter had been a patient of ours a few years before when she received her liver transplant. He showed me a picture of his beautiful daughter, she had been a patient before my time, but she certainly didn’t look like ‘a transplant patient’. And this is one of the things I love about transplant nursing.
We should never feel under any pressure to disclose our health conditions without our wish, but I can’t help but think what a wonderful, ‘walking advert’ transplant patients are.
I was especially fortunate to meet Lucia, the creator of this Live Loudly Donate Proudly campaign, and it was my privilege to nurse her following her 4th transplant.
Tragically, Lucia didn’t survive her final hospital admission but I know that the 12 years she had following her transplants she lived to the full. More fully perhaps than most of us do. This knowledge is a gift the transplant community has given me – to treasure every minute that we are fortunate to have and to make the most of every opportunity. Lucia was not alone in demonstrating this to me. A long-term patient of ours recently attended an NHS demo with me and colleagues, and I am enormously grateful of his support.
My career has perhaps made me more likely to talk about my wishes after death, to initiate conversations and make clear my intentions with my body, should anything happen to me. I am proud to be on the organ donor register and I encourage everyone to have conversations about what this could be for them. It is the most wonderful gift you can give a person and their families: the gift of time.
I know if I can ever give someone that same gift, I will do so loudly and very, very proudly.
Megan – Staff Nurse, King’s College Hospital Liver Intensive Therapy Unit