A transplant saved my life... then I had to see my sister die as she waited for her chance
ACYSTIC fibrosis patient who received a life-saving lung transplant has told of the agony of watching her sister die of the same condition because a donor could not be found.
Nicki Williams, 29, held Michelle’s hand as she took her last breath, 10 months after joining the transplant list.
She died from the genetic condition, aged 30 – just months before her planned wedding.
Nicki, who backs our Change the Law for Life campaign for an opt-out system to organ donation, said: “I feel so much guilt that Michelle isn’t here and I am.
“Getting a transplant changed my life. I just always assumed that Michelle would get her chance, too.
“If there were more organs, maybe they could have found a donor in time.”
Michelle was diagnosed with cystic fibrosis at three weeks old. It causes breathing and digestive difficulties, and mostly affects the lungs. Average life expectancy can be as low as 37.
When Nicki was born three years later, she had a 50% chance of having it. Parents Hazel and George were devastated when doctors confirmed their worst fears.
Aged six and nine, the girls had to stay in hospital for two weeks, every three months for intravenous antibiotic treatment to fight infections.
Nicki, of Kettering, Northants, said: “We were in and out of hospital throughout our childhood, so we did miss school. But when we were well, we’d do as much as we could with our friends.”
The health of the sisters, who were raised by their dad after their mum died, deteriorated rapidly when they hit their 20s. Beauty therapist Nicki and Michelle, a nursery nurse, became too ill to work.
Nicki said: “We spent most of our time together after that as we were both poorly and couldn’t do much. It was hard but we had each other.”
In 2012, aged 23, Nicki’s lung collapsed for the first time and doctors started to discuss a transplant. She was placed on the waiting list in May 2013 but had to wait more than 18 months for a donor.
Nicki got a call from the transplant team in January 2015, while driving to her sister’s house. She said: “I had no real quality of life by that point. I was struggling for every breath and just surviving.
“I’d been waiting so long, I didn’t think it could possibly be my transplant call. I was told they had some lungs they thought would be viable, so I turned around and went to get my dad. I’d always kept my bag in the car, in case that call came. He drove me to Royal
Papworth Hospital in Cambridge.” That night she underwent an eighthour operation. Michelle, fighting the flu in another hospital, texted: “I’m so happy for you. I can’t wait to see you.”
The transplant allowed Nicki to breathe properly for the first time in years. Her health improved immediately, allowing her to work part-time.
But Michelle’s condition worsened and the following May her name was added to the transplant list. Nicki said: “She told me she was really frightened but she saw the difference it made to me and I think that helped her.” Michelle and partner Neil Goodman booked their wedding day for August 2017, with Nicki as maid of honour.
Nicki said: “She didn’t want to go down the aisle in a wheelchair but we thought she’d get a transplant by then.
“She booked a venue and picked bridesmaids but that was as far as she got before she became really poorly.
“She knew she wouldn’t have long without a transplant but never wanted to bring the wedding forward as she wanted to be well on her big day.”
But her lung function deteriorated further. On March 5, 2017, Michelle was called to Papworth after a pair of lungs became available but they were not viable.
Nicki added: “They aren’t able to tell us why but something went wrong. That was where she really started to decline. The disappointment took all the energy she had left.”
Tragically, she died 11 days after the Papworth call. Nicki, her dad and Neil, 41, had sat by Michelle’s bed and told her it was OK to let go. They held her hand as her lungs finally gave up.
Nicki said: “I’m forever grateful for my transplant. But I have so much guilt that it was me and not Michelle, too. I’ve struggled a lot with that.
“Now I’m speaking out to encourage people to talk about organ donation. If her story makes just a few people sign up [to the donor register], that could mean a few people will be saved. The opt-out system would make so many more organs available and help people before time runs out.”
In February MPs voted in favour of such a system, with everyone considered a donor unless they opt out.
It will be referred to as Max’s Law after Mirror boy Max Johnson, 10, who was saved by a heart transplant.
There are 6,500 patients waiting for transplants.
We were both poorly and could not do much, it was hard but we had each other NICKI WILLIAMS ON BATTLING CYSTIC FIBROSIS WITH HER SISTER MICHELLE