Diane’s story: “PBC may return. If it does, I know what to expect.”

Diane had Primary Biliary Cholangitis (PBC), a rare autoimmune liver condition. She's shared her liver transplant story to help raise awareness of the disease. Thank you very much, Diane. 

Without a supportive partner, my road to recovery would have been a lot harder.

"At the age of 33, after not being able to put a finger on my fatigue, I was diagnosed with multiple autoimmune disorders. Being difficult to diagnose, I went through numerous tests until PBC was diagnosed with possible autoimmune hepatitis or crossover. For many years I worked, raised children, took prescribed medication and generally tried to get on with life.

"Fast forward to late 2018. It became evident that things were not going well. My colour was changing and my strength ebbing. I went to Queen Elizabeth Hospital Birmingham in January 2019 where the doctor very bluntly and honestly told me that my liver was struggling, my life expectancy was shortened and that now was the time to be listed for transplant.

"All the fight that I had trying to kid folk that I was 'fine' left me that day. I had my one-day assessment in May, then on 12th and 13th June, the two-day assessment. This was all at Birmingham, with my husband as shell shocked as myself.

Liver transplant

"On the afternoon of the 14th, a telephone call came to say that I would be listed. By this time my colour was butterscotch. It was past being a nice holiday tan. The listing went active on 18th June and I had my call on 23rd June.

"My husband drove us there, we didn't even speak, but I had this tremendous calm wash over me. I was resigned to this 'what will be will be' situation.

"The waiting to see if the liver was suitable for me seemed an eternity. It was midday when I got wheeled to theatre after waiting from arrival at 4 am. We were then both in pieces, obviously not knowing if I would survive. I was barely eight stone at that time.

"Five hours later, my husband, to his relief, was told that it had been a success and I was being taken to ICU. After six days I was discharged from hospital complete with a carrier bag of medications, a drain still in situ and a cushion held to my stomach (more as a comfort).

The road to recovery

"It is almost two years now since my transplant and I am now walking distances with my husband, bowling again and, in spite of shielding in lockdown, I am loving and living life as much as possible. It is a different lifestyle nowadays though with the restrictions in place and the vulnerability of being on immunosuppressants for life but it is a calm, healthy and satisfying lifestyle that we as a couple can continue to lead. My family cannot believe the change, especially my strength, as I can run about with the grandchildren, much to their amusement.

"PBC may return. If it does, I now know what to expect. It can be managed successfully but mine had become progressive. I am no longer scared of the idea but just hope that, thanks to my donor, I can be a good custodian to the organ and enjoy life.

"The staff at Queen Elizabeth Hospital have been on the ball at every progression or pitfall, so very supportive. Their team have endless patience. However, without a supportive partner, my road to recovery would have been a lot harder. Dean has been there throughout for me, tough days and happy ones, keeping his encouragement and enthusiasm which helped me literally get back on my feet."

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