‘I’m desperate to find a live kidney donor,’ says 52-year-old facing renal failure
Sharon Caplan from Borehamwood has had Crohn’s disease since she was 12. She’s had 30 operations and estimates she has nearly died ‘three or four times’
An inspirational 52-year-old mum of two from Borehamwood is calling on the community to help save her life by being tested as a possible kidney donor.
Sharon Caplan has battled debilitating Crohn’s disease since she was 12. Since then she estimates she has had 30 operations. She says she “nearly died three or four times because I’ve had sepsis. It creates a lot of complications.”
Speaking to Jewish News to raise awareness of her race to survive, Caplan says that about 10 years ago she “kept on getting kidney stones, and a week before my youngest daughter’s batmitzvah, I did a biopsy, which revealed chronic kidney disease, stage 3. I didn’t really understand much about it. I just learnt to live with the symptoms – constant urine infections, pain in my side, back pain, water retention, breathlessness.”
Since then, her condition has progressed to stage 5 which, she explains, “means I am in renal failure and I have been told that I need to have a kidney transplant. It has been explained to me that it would be better for me to have a kidney from a live donor rather than a deceased one.”
A live kidney donation will give Sharon at least 20 years of good health before she need another, and it will lessen the chances of rejection. In comparison, a donated organ from someone who had died will last about five years.
Sharon tells Jewish News: “If I get to the point that I’m really ill, and I need dialysis, my doctor doesn’t want me to have it because of my conditions.”
When she’s put on the deceased donor list, she is likely to be waiting years for a donation, which in turn means that she will need dialysis to keep her alive. And if she goes on dialysis, she will “never be be strong enough to have the operation and my life won’t be worth living”.
She adds: “My kids got tested. They weren’t a match. My husband Daniel had a heart attack and bypass and diabetes, so he’s not allowed. My other family can’t for medical reasons. I had a couple of friends who tested. You have to match six criteria, such as blood and tissue types. My kids matched three.”
A potential donor needs a top five criteria or a full match to even be considered.
Sharon doesn’t know who else to ask and admits she has “been trying to live my life in denial”.
In the last six months, at stage 5 renal failure, she’s “having terrible UTIs (Urinary tract infections), peeing blood, waking up in the morning with painful fluid retention and swelling. I’ve got no energy. To look at me, you wouldn’t know. I go out with friends in the evening but I’d have to rest all day.”
Sharon knows it’s “a huge thing to ask a stranger. They’d have to have major surgery and need six weeks to recover. But it’s giving the gift of life.”
She tells Jewish News her daughters are “used to me being ill. They’ve dealt with my Crohn’s since I was born. I had a bowel resection after each of them were born. There is something called a sharing scheme, but I’m reluctant for my eldest daughter to do it. God forbid they got ill, had children one day; they haven’t lived their lives yet. It’s a lottery: the kidney they donate will help someone else and I’d get a kidney in return. My eldest said she’d do it. If I was at death’s door, I’d say yes, but until then I don’t want her to do it.”
Sharon says: “That’s my story. I’m desperate to find a live kidney donor. I don’t want to think about what will happen.”
• If you would like to be tested to become a live kidney donor for Sharon, please email ICHC-tr.livingdonorcoordinators@nhs.net and quote her consultant’s name, Neil Duncan
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