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Family members and carers play an important role in supporting patients during an episode of ill health. We are committed to the active involvement of family members, friends and carers during a hospital stay. Family members and carers play an important role in supporting patients during an episode of ill health.
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Date: 02 September 2019
As part of Organ Donation Week 2019, mum-of-one Michele Fallance is sharing her story. Michele lives in Bursledon with her husband John and their 12-year-old daughter Elizabeth. At the age of just 45, Michele was told that she required a kidney transplant after living with hereditary Polycystic Kidney Disease (PKD).
PKD causes a number of fluid filled cysts to grow in the kidneys. If too many cysts grow or become too big, the kidneys can become damaged. PKD cysts can slowly replace much of the kidneys, which reduces kidney function and leads to kidney failure.
Michele inherited PKD from her mother’s side of the family, and ultimately lost her grandfather and mother as a result of the disease.
Michele, now 50 years old, says: “My mum was checked and they found she had PKD. The GP then told me not to worry about it at the time, but in 1997 my mum passed away from a brain haemorrhage, related to the kidney disease. That’s when it all kicked off.
“My brother and I were both checked and we both have polycystic kidneys. We knew that eventually we would end up on dialysis.”
After her PKD diagnosis Michele continued life as normal for a while, marrying her husband John in 2005 and giving birth to her daughter Elizabeth in 2006.
A few years after giving birth to Elizabeth however, Michele was given the concerning news that her kidney function was slowly declining and dialysis would be required, and ultimately a transplant.
Michele struggled with the life balance of dialysis treatment at Queen Alexandra Hospital in Cosham (QA) for two months, and after support from family, Michele made the decision to begin dialysing from home while awaiting a much needed transplant.
Michele says: “When you’re on dialysis you don’t have the energy. The priority was keeping myself alive. You’re in limbo when waiting for a transplant. You’re not unwell, but you’re not healthy.”
The largest part of Michele’s life that was affected by PKD was the impact on family life, especially her daughter Elizabeth.
Michele says: “Elizabeth was around 7 when I first started dialysing. She can only remember me on the machine. Elizabeth knows that the machine is what keeps mummy alive, and she finds it hard when I’m in hospital.”
In July 2018 Michele was called in for a kidney transplant; however this was not possible due to Michele having a hernia at the time, caused by her previous caesarean section.
After years of seemingly endless waiting, Michele was finding it difficult to stay strong.
Michele explains: “I couldn’t see an end, the goal posts were always moving due to my hernia and health. It felt like it was never going to happen…I ended up on anti-depressants during the waiting time. I had times when I just thought I’m never going to get a transplant. If it weren’t for John and Elizabeth I think I would have given up.”
Michele underwent an operation to correct her hernia in October 2018 and after time to recover, she was ready for a transplant. At 2am on 5th June 2019, the life changing call from QA was received.
Michele says: “The hardest part for me has been the waiting, the not knowing…I was really nervous when I got the call. I phoned my bother and he came over, it was the middle of the night. It’s a whirlwind; you can’t quite believe it’s happening when you’ve waited so long.”
The transplant operation took four hours to complete, and Michele can’t thank the staff at QA enough for their support throughout the process during a physically and emotionally challenging journey.
Michele explains: “The staff at QA are brilliant. If you ask them to do something they always do it, nothing is too much trouble. They’re really good. Faces become familiar to you when you’ve been in before, and that helps.”
Michele also has high praise for the aftercare she has received from QA since undergoing her transplant.
Michele says: “The treatment, aftercare and staff have been fantastic. Dr Sangala, as well as Terry and Nikki the home dialysis team, are fantastic and have brilliant knowledge.”
Michele is focussing on the future, and her priority firmly remains on family time.
Michele says: “I constantly had dialysing on my mind, fitting it into my day. It affected anything. Now I can’t wait to go on holiday with family.
“When you’re a parent, you want to see your daughter get married, have children. All those achievements are what kept me going even on my worst days. Now the kidney is working fantastically well!”
Now living with her brand new kidney and beginning to embrace life once more, Michele is hoping to take Elizabeth on the trip of a lifetime to Disneyland and to re-introduce herself into the local community, and Michele has now found another way for her donor to be a part of everything she does.
Michele explains: “A friend of mine sent me a little white teddy bear as a gift, so I called him donor and I said to Elizabeth that we take the bear with us wherever we go, so that the person who didn’t live the life that they should have can do and see the things that we do.
“I say to my daughter that this bear is for the person who gave mummy her life back.”
Michele is sharing her story as part of Organ Donation week, and is keen to highlight just how important organ donation is to those in need.
Michele says: “I honestly don’t think people realise how much if affects you when your kidneys don’t work. There’s no perception of what it’s really like.
“The more people who know about organ donation, the better it is going to be. It people were more aware about how much it does affect someone’s life, and how much the donations are appreciated, it will help. I am so grateful to my donor.
“I’ve told Elizabeth about how I’ve been given this amazing gift, and we’ve talked about organ donation and how it is her choice to consider in the future if she wants to.”
Paul Gibbs, a consultant surgeon at QA, says: “Transplants save lives. As transplant surgeons we can only perform the lifesaving operation after the generosity of donors and their families who continue to amaze me with their kindness at the time of great loss and sadness. It is always important to remember those brave individuals and families that said yes when asked about donation. We thank them all.”
To find out more about organ donation, please visit: https://www.organdonation.nhs.uk/
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