I went to my GP back in 2000 because I had been suffering from diarrhea for a rather a long time. I was referred to a consultant, Dr. Ellis at the Horton Hospital, Banbury. When he looked at my blood test results, he found that I had the anti-mitochondrial antibody which can sometimes lead to Primary Biliary Cholangitis. And unfortunately for me, it did.
This was confirmed in July 2007 and led to checkups, various tests and scans over the years, which gradually increased as time went on. I was prescribed ursodeoxycholic acid, steroids, calcium, alendronic acid and many other different medications over the years. If I got an illness, it would make me feel more unwell and for longer than other people had it. I did have the itch that can go with the illness at first, but thankfully that side of things disappeared for me. The main thing that I suffered with was the extreme tiredness. I worked part-time, lived with my two daughters (teenagers at the time), had a dog, and a house to run – life was quite tough sometimes! I gradually started to suffer more as the years went on, with 2014 being the worst. I also got ascites for the first time and eventually had two drains. A consultant from the John Radcliffe Hospital in Oxford told me that it was looking like transplant time and in November 2014 my GP told me enough was enough, I just wasn’t fit to work anymore, and he signed me off work. In the December, I went to see a consultant at the Queen Elizabeth Hospital, who confirmed that I needed a transplant very soon. In the first week of January 2015, I stayed in the hospital for a week and had all the tests for the transplant assessment. I was told that I was fit enough to undergo the operation and was put on the list.
I got the phone call during the evening of Saturday 22nd February 2015. After swearing, crying, telling Robyn and Leah (my two daughters) and getting my last minute things packed, Robyn, Leah, and Gary (my partner) set off for the Queen Elizabeth Hospital. After I was admitted, we all decided to try and get some sleep! I was taken to theatre for my liver transplant in the early hours of Sunday morning. My surgeon was Mr. Mirza.
I think the operation went quite smoothly from what I have been told. But in the afternoon of the following day my family was told that the liver was failing, my arterial vein was too small, and half of the liver was without blood. So I was put onto the super urgent list, and again my family was told that another liver needed to be found for me within 72 hours. So just in time, on Friday 27th February I was taken to theatre for my second liver transplant. My surgeon this time was Mr. Muiesan, and he was assisted by Dr. Mergental. This operation was a lot more tricky, took a rather a long time. I had some infection from the failing first liver, I lost a lot of blood, and at a later clinic appointment, I was told by Dr. Mergental that they only just saved me in time.
Then, I started my time in Critical Care. Obviously, at first, sedated, then I woke up to begin my recovery. But I was one crazy lady! I had such detailed ‘dreams,’ which all involved the doctors and nurses looking after me, but were set in different places. Some of them were very scary. But worse than that, for my family, was that I was horrible to them, and I was swearing, shouting, screaming. I was also like this to the doctors and nursing staff, refusing to have things done. I must have made it very difficult for them to do what they needed. This was a result of all the drugs and toxins that were in my body and is apparently quite a common reaction!
After a while, I was moved out of Critical Care to the liver ward. Physically ready but definitely not mentally – I was still crazy there for a while! Then I got pneumonia – a very scary time, I just could not breathe. So back to Critical Care, I went for further treatment. Thankfully I eventually recovered from this, too.
When back on the ward again, and after getting through severe diarrhea, not feeling well and losing weight, I very slowly started to recover. While being pushed around the hospital by my daughters in a wheelchair and watching everyone else walking around everywhere, I can remember thinking to myself that I would never be able to just wander around again. I was so weak. But eventually, after five weeks and five days, I was discharged from the Queen Elizabeth Hospital Birmingham.
Back at home, some days were tougher than others but I very gradually recovered. It took months. I know I am very lucky to still be here today. My surgeons are now my heroes, and I thank all the doctors and nursing staff from both Critical Care and the liver ward, that looked after me during my long stay in the hospital. I am extremely grateful to my two donors and their families and always will be.
I have gone back to work part-time. I enjoy spending this extra time I have been given with my family and doing the ‘normal’ things again that I haven’t been able to do for a long time without struggling. I volunteer in the liver ward at the John Radcliffe Hospital in Oxford and talk to the patients there who are suffering with their own different liver illnesses. And I write a blog all about my journey www.mylovelyliver.co.uk – please do have a read!
In January 2017, I came across the #walk1000miles challenge and decided to take part. I then thought that I might as well try and raise some money while doing this. I chose Queen Elizabeth Hospital Birmingham Charity because that’s where my life was saved. I was chosen as a finalist for their Best in Care Awards 2017 in the category ‘QEHB Charity Supporter of the Year.’
In the November, I went back to the Queen Elizabeth Hospital with Robyn, Leah, and Gary and we all walked my 1000th mile together around the outside of the hospital. As the year for my challenge didn’t end until the beginning of the following January, I was planning to continue with my walking to see just how many miles I could do. But then a disaster happened, while out for one of my walks I very suddenly tore my calf muscle. I never seem to do anything easily! After a month I was finally able to start walking shorter distances again.
It’s now 2018, and I am feeling well. Let’s hope it continues.
All thanks to Organ Donation!
Cliff Conedy says
Thank you for sharing your story!