Natasha’s story: “My liver was covering my heart and going into my groin”

Natasha was put on the liver transplant waiting list when doctors realised her liver was so large it was covering her heart. She shares her story here. 

"I'm Natasha and I was diagnosed at the age of 23 with the hereditary disease Autosomal Dominant Polycystic Kidney Disease, or ADPKD. This is where a genetic deletion means that my body produces thousands of cysts in my kidneys and liver.

"The cysts grow over the years and eventually it can lead to declining kidney function and to kidney failure. Luckily, the growing cysts in the liver do not effect liver function and most people have no complications. In both cases the organs can become enlarged and cumbersome. In very rare cases, the liver becomes so enlarged that it can press on other organs, limit mobility, cause great fatigue and can seriously affect the quality of life for a person. This happened to me.

"Bedtime was regularly 3pm"

"I first noticed my liver hardening and growing at an alarming rate in 2015. My girth was growing by 2-3cm a month and I knew it wasn't from eating because I was also on a diet. By 2017 I was looking very heavily pregnant and my days were short as I struggled with fatigue, so bedtime was regularly 3pm.

"I had to cancel so many things, theatre and concert tickets, shows, family and friend visits and holidays. My poor husband had to attend things on his own without me as the little energy I did have I needed to use to continue working full time. My employer was great, they changed my role to something more home based and everyone around me was incredibly supportive. I have to say, this was just part of my life and I didn't really think much of it. I am not a "sufferer" so to speak.

Referral 

"With ADPKD we patients are cared for by the renal teams. So complaining to them about my liver fell on deaf ears for a few years. My pointing out its growth to them was met with shrugs and comments such as 'oh yes, that happens, but you have to live with it'. As a determined person who has made a big effort in understanding the disease, I upped my efforts in demanding a referral and eventually in late 2017 I was referred to Queen Elizabeth Hospital Birmingham (QEHB).

"My first appointment in March 2018 went well and it was agreed I was to be seen under them annually until it ever became necessary to be seen sooner. I was given the contact numbers of the department and waved off for a year. However, on May 4th 2018, the weekend of my hen do, a liver cyst ruptured and then became infected. Oh the pain! I was very unwell but I decided to contact QEHB once more.

"Due to some miracle, there was an appointment available the very next day. Within the next 24 hours I went from being a person with a pain in her liver to being told I definitely needed to be assessed for transplant! My liver was now covering my heart and reaching all the way down into my groin. It was huge.

"On 27th July 2018, after a three-day assessment, I was listed and the call came just three months later on 7th November 2018.

Recovery

"Because I am young and otherwise fit and healthy the transplant was a dream. I was in ICU for about 36 hours and let home after only eight days. I've since had no complications and my drug management has been perfect. My liver results continue to remain 'pristine'. Sure, it took several months to recover energy and for the brain fog to dissipate and I'd say I didn't declare myself as completely back to normal until a full two years on, but it's true. I regard my transplant as an operation that happened once and life now is great.

"The pandemic has been very scary, but I don't bow to pressure and I remain home and safe and I will keep shielding as long as it takes. I can work from home, so it's perfect. I'm fully vaccinated and I will definitely get the booster when it's offered.

"I don't know who my donor was but I am forever grateful to the family. And I'm also grateful to my family and friends who have supported me throughout this journey and who continue to do so.

You can read Natasha's blog on Facebook

 

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