Jenna Williams has spent the last year of her life living in hospital. She is in desperate need of a new heart so she can return home to her wife, Nicola Williams and two daughters.
It isn't the first time Jenna is undergoing this wait to save her life. She underwent a heart transplant 17-years-ago, in 2006, just a month after being added to the donor list after being diagnosed with cardiomyopathy.
This time, things are a little different, she is being kept alive by a machine at Queen Elizabeth Hospital, Birmingham. In the last year, there have been four instances where a heart has become available for Jenna, but each opportunity failed at the final hurdle.
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Her family from Bargoed have opened up about what the last year has been like for her away from her family, only seeing her daughters for a few hours once a week, calling the hospital a home, and waiting for someone else's misfortune, to save her life.
Kirsty Silcox, Jenna's sister, said that is one of the hardest parts of waiting for an organ transplant. She said: "The thing is, we know our fortune can only come from someone else's misfortune. We understand the impact that is going to have on another family. It is hard."
Jenna, 38, first fell ill in June 2005, at the age of 20. She started to feel out of breath a lot and collapsed walking home one day. After going to the GP, and being rushed to hospital, further tests confirmed she had a rare form of cardiomyopathy, she was told she had a severely weak heart and was sent to Queen Elizabeth Hospital in Birmingham (QE) - a specialist transplant hospital - for an urgent assessment for a heart transplant. She was told she wouldn't last a year without a new heart.
According to the NHS, cardiomyopathy is a general term for diseases of the heart muscle, where the walls of the heart chambers have become stretched, thickened or stiff and affects the heart's ability to pump blood. In Jenna's case, it was discovered she had inherited a mutated gene which made her more vulnerable to the condition.
She was formally added to the list on December 3 of that year, and was offered a heart just two weeks later, but it wasn't viable, thankfully, she didn't have to wait much longer, and she underwent a successful heart transplant on January 5, 2006.
Jenna's doctors advised that her family also undergo screening for the condition, and Jenna's dad, Kevin Silcox, underwent a screening that same year where it was confirmed he had the same condition. His wasn't as severe and could be treated with medication. He was then fitted with a pacemaker in 2010, but he was added to the non-urgent transplant list in 2018, and is waiting for a heart while living at home.
Despite being told she wouldn't have children, Jenna fell pregnant and had her daughter Angel in 2010. She was checked for the hereditary condition at the age of one, and was given the all clear, however has since developed the condition and is on medication. Jenna had a second daughter in 2012, Iliana, who has also been tested for the condition too.
Writing about her experience previously, Jenna said she had never been so scared in her life, upon hearing the news that she had less than a year to live. Talking about her recovery from her first heart transplant, she said: "After two weeks, I was given a pacemaker, but the following week I was sent home to recover with a box of medication. My recovery was perfect, I bounced back to the fit 21-year-old I was and returned to work as a teaching assistant after just five months. Life was good. I had regular check ups and everything always looked good."
However, in 2019, Jenna started experiencing chest pains, dizzy spells and palpitations. She was diagnosed with angina, and described it as the beginning of her "going downhill again".
Jenna said: "I was back and forth into hospital, being admitted for numerous angiograms which resulted in my having stents and balloons. I then started to get out of breath walking just like before and put on a lot of weight, which I later found out was fluid. I was tired constantly and had no energy. I phone the transplant team who told me to attend clinic on March 28, 2022. I attended and had a right heart catheter and biopsy. After getting my results I was told I needed to be admitted as soon as possible as I was in heart failure again.
"My heart was deteriorating. I was assessed for a second heart transplant at the hospital where I'm now waiting for the call. I am now on the urgent list which means I can not go home as I'm on strong medication that's basically keeping me alive. I'm away from my two daughters, parents, wife, sister, nephew and my friends. It is a very hard journey being away from my kids which is unbearable. My heart is breaking not seeing them every day. I've missed out on so much being in here with the children and I pray I have a heart soon."
A year after her admission, Jenna is still waiting. Her sister Kirsty said : “We have had four phone calls now where we have all rushed up, and the last test where the consultant surgeons travel to where the donor heart is, every time they have done that, its been a case of it is no, it is not good. On one occasion she was gowned up.
“We have had to be prepared as it is a second heart transplant, that comes with more complications. The surgery would take around 18 hours and the recovery will take a lot longer. We have to be prepared there could be a lot of complications this time. The first time we had the phone call there was a potential heart it broke my heart, knowing she is alive in hospital, we know it is not going to be easy when that heart comes through, there's so many things to consider. That phone call is the only thing that is going to save her."
Kirsty said that despite living away from her girls, Jenna is so strong for them. They visit her every Sunday for a few hours and are desperate to have their Mam home. Kirsty said: "She is the most brave, inspiring woman ever, all the staff there absolutely adore her."
Jenna's wife, Nicola, echoed what Kirsty said. She added: "The past year has been a nightmare. All our lives have been flipped upside down. But Jenna is doing really good, I don't know how she has been so strong, she is keeping her head together. We are trying to get on with it as much as we can, but it is hard."
Kirsty is urging people to have a discussion with their family about organ donation as ultimately, they are the ones who can make the decision as to whether a person's organs are donated or not.
Everyone has a choice about whether they want to donate. You can register your decision (opt in or opt out) on the NHS Organ Donor Register. If you do not register a decision, it will be considered you have no objections to becoming a donor and your consent will be deemed.
However, relatives and next of kin will always have the final say and can say no to organ donation so it is important to have a discussion with your family to make sure they know what you want so they can support the decision to save lives if it ever came to that point. By adding your name and decision to the register and telling your family, they will be in no doubt.
Fifty-nine people in Wales became organ donors after their death in 2021/22. And 129 patients waiting for a transplant in Wales received a life changing gift last year. Every organ donor can save up to nine lives after they die by giving their organs to patients waiting for a transplant.
There are 228 people in the Wales currently waiting for a transplant. It is quick and easy to join the NHS Organ Donor Register. Call 0300 123 23 23 or visit www.organdonation.nhs.uk
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