Jenette Blackham and Tessa Deakin are now sharing their story as Organ Donation Week gets underway, to showcase the power of organ donation and highlight "the greatest gift that can ever be given".
Twenty-one years ago, Jenette, who is now a medical examiner officer at The Royal Wolverhampton NHS Trust, was pregnant with her son Jamie.
Her condition was picked up during a routine maternity appointment and was later diagnosed as having stage three kidney failure, which she was able to manage with daily medication.
Despite feeling as though she had “kept a handle” on the disease, it had an impact on her daily life.
The 47-year-old said: “I didn’t have the energy to exercise or socialise with friends. The emphasis is on keeping a balanced lifestyle, but it’s easy to do that when you’re feeling well. Everything was a struggle for me.”
With little motivation and severe fatigue, she noticed a gradual decline in her health over the years, despite receiving “brilliant care” from the trust’s renal team.
“I'm a person who pushes through things, but it’s difficult to manage both the physical stress and your emotional wellbeing,” she explained.
“You think something like kidney failure doesn't impact others around you, but it does, as they are continually worried about you.”
Jenette was added to the UK Kidney Transplant list in January 2017 and in the run-up to Christmas that year was advised by her renal team that dialysis would need to start shortly unless a donor was identified.
While the sisters had often discussed the prospect of organ donation from within the family, Jenette still remembers the huge feeling of guilt that came with accepting her sister’s kind offer.
“Despite the 14 years leading up to that moment, the feeling of involving my family in such a serious procedure created emotional challenges,” said Jenette, who has accessed counselling to help her deal with her feelings.
“It was great news that my sister was a match but putting her through the process was upsetting. I had to call my mum and dad on the day of the transplant to say Tessa was going down for surgery and it was so overwhelming.”
The pair were admitted to the Queen Elizabeth in Birmingham in January 2018 where both operations were successful.
Jenette said: “I remember waking up in the recovery room and I could instantly tell there was a difference. It made me realise that I never actually knew how poorly I was. I suddenly felt less tired – I had more energy. Even the nurse said my complexion looked brighter.”
Post-surgery, the Wolverhampton mum-of-one had constant monitoring to check the kidney was not rejected, while on discharge back home her recovery was slow, with difficulties walking and lying down.
As someone who had never been in hospital and was fit and healthy, sister Tessa also felt the impact on her mobility and day-to-day tasks.
“Emotionally it hit me like a ton of bricks – physically and emotionally,” she explained.
“I was overwhelmed with what we had accomplished as sisters.”
Missing the hustle and bustle of office life, Jenette was raring to go back to the trust she has been at for the last 17 years after an “isolating three months off”.
Now, almost six years on, she feels “extremely lucky” to be where she is today. She takes regular medication – immunosuppressants and steroids to keep her kidney supported – and continues to see the renal team every few months for check-ups.
With a renewed outlook on life, Jenette keeps herself grounded through meditation and has started having golf lessons, as this was something she wasn’t able to pursue prior to the transplant.
“It’s like I reset myself – I can finally do the things I want to do,” she added.
“It’s been emotionally challenging at times which is why I took up meditation, but it really helps me to cope with the difficult moments and to press forward.”
Now, thanks to older sister and living donor Tessa, Jenette feels energised and ready to help people in a different way.
“She gave me the gift of life and I want to go on and help other people if I can,” said Jenette.
Now, as the organ donation committee chair at The Royal Wolverhampton NHS Trust, Jenette wants to use her experience to ensure resources are in place so organ donation continues to happen in a timely and effective manner.
The committee exists to ensure the trust maintains best practice alongside national guidance, while also working to promote knowledge and awareness of donation and its benefits throughout the hospital and wider community.
Jenette added: “I’m excited to get stuck into the promotional side of organ donation, including engagement with staff and faith/community groups to ensure people are talking about their wishes.
“I’ll be getting my teeth into the data and understanding any missed opportunities, while also looking at what support we can offer to families to help them to make informed decisions.”
To learn more about organ donation and how to become a donor, visit organdonation.nhs.uk and register your decision today.