Julie Bartlett, aged 58, has advanced heart failure and has been waiting for a heart transplant for nearly three years. She has been an inpatient on the urgent transplant list at Harefield Hospital in Uxbridge since February 2019. This will be her second Christmas at Harefield Hospital, after she spent Christmas 2016 at the hospital following surgery in December 2016 to implant a left ventricular assist device (LVAD), a pump that is used to help the heart circulate blood around the body in patients with advanced heart failure.
LVAD - a 'bridge to transplant'
Over the last three years I have been on the routine transplant list with my LVAD as a bridge to transplant. Over the weekend I celebrated my third ‘VAD-iversary’, marking three years since my surgery to implant the LVAD.
I have been so very grateful for my LVAD giving me my life back in 2016, when I had reached end stage heart failure. It has given me so many extra years of memories, including holding my twin grandsons when they were born in 2018, going on the family holiday to Spain last year, and most of all having a normal quality of life again to enjoy all the lovely things that everyone else does.
Life with an LVAD is just like life with a mobile phone nowadays. It’s permanently with me, needs regularly charging but it’s essential and I couldn’t live without it. Apart from adapting my clothing to accommodate the driveline and increasing my handbag collection to carry it in, it hasn’t ever been an issue. I love my LVAD, but I will be happy to be free of it again after my transplant.
Waiting for the call
I have been waiting as an inpatient on the urgent transplant list at Harefield since February 2019 and I spend that time thanking each and every member of the marvellous team of people who care for me here and make this experience of living at Harefield such a positive one. Harefield is a very special place, the bar is set very high and the friendly, caring staff go above and beyond.
One member of staff said to me this morning: “We are family when you are here.” It’s true, the nurses will give you a hug, just because they feel you need one, and everyone around the hospital you get to recognise says hello.
Waiting for a transplant is like being in a state of anxiety all the time, you’re ever hopeful of the call or arrival of your transplant coordinator to say you’ve got your chance. You try not to let it consume all of your thoughts but it’s always there. It’s a crazy mix of emotions, excitement, sadness, fear, hope, worry and a privilege to be considered worthy of listing.
The transplant club
I’m a positive person and I’ve always got my ‘positive pants’ on. The fact that nine of my friends and fellow inpatients here have had successful transplants while I’ve been here is very inspiring. I supported them throughout their journeys and they keep in touch now they’re home and come and visit me when they come back to clinic. We are a unique club and have planned a Christmas lunch here together this year. They’re all desperate for me to have my transplant, so we can meet up on the outside too.
Sharing my story
I have been collaborating with others to share my story and encourage everyone to talk about organ donation and register as a donor. I set up Facebook and Twitter accounts called ‘Waiting For The Call’ to break the taboo around talking about death and dying, organ donation and consent. The fact is, even with the change in law this spring to ‘opt out’ of organ donation, the family of any potential donor will still be approached before organ donation goes ahead and they should not be left guessing. I’m not convinced that everyone knows this fact and I aim to help spread awareness about the importance of making your decision and talking with your family. It’s sad to hear that families have not respected their loved ones wishes because they hadn’t spoken about it.
A transplant would change my life and free me from the last decade of heart failure and the use of several technological devices I am dependent on, my CRT-D (cardiac resynchronization therapy defibrillator) and LVAD, both of which I have been extremely grateful for. It would be a chance to enjoy my twin grandsons now aged 18 months and visit my granddaughter, aged 5, in Australia. I’d like to continue volunteering for charities, particularly the Royal Brompton & Harefield Hospitals Charity and my participant role on the panel at NHS Genomics. My cardiac condition is genetic and affects four generations of our family, all our family are cared for by the Royal Brompton & Harefield Hospitals together and so genomics is an exciting part of the future of medicine and particularly interesting to me.
Christmas at Harefield Hospital
Spending Christmas waiting for a transplant honestly is no different than any other day, the transplant coordinator could walk through the door anytime of the day or night on any day. I wouldn’t mind missing my Christmas Day for my transplant, a friend here was transplanted on Christmas Day and as I love Christmas so much, it would be the best present ever!
Waiting for my transplant at Christmas in Harefield is like being part of one big happy Christmassy family, we have decorated the tree in the conservatory together with staff and patients and my room is looking like Santa’s grotto. Having spent Christmas 2016 in Harefield with my LVAD recovery, I know that there is a warm and festive feeling at Christmas. Volunteer carol singers fill the wards with carols (the nurses request their favourite, ‘Silent Night’) and we had Christmas lunch in the conservatory with all the patients and our families were invited too. The nurses shared a beautiful Christmas lunch with all the trimmings and games after. I’m sure it will be just as lovely this year.
Looking to the future
My hopes for the future are that this new decade, along with the change in law to ‘opt out’, brings renewed hope for the thousands waiting for a transplant. I hope the numbers of people waiting and the length of time they wait start to fall. I’m hearing about exciting developments about LVAD and the future of organ donation is always evolving with research and technology. The future is exciting.
In 1995, Harefield Hospital began a pioneering 'artificial heart' programme (also known as left ventricular assist devices or VADs). Harefield hospital has the UK's largest VAD service, many patients receive VADs while they wait for a transplant and we have the largest population of patients 'bridged' to transplant with an artificial heart in the UK. Supporting a patient’s failing heart, VADs give patients valuable extra time on the transplant waiting list and have saved hundreds of lives. Find out more about our transplantation services and LVADs at: https://www.rbht.nhs.uk/our-services/heart/transplantation
Find out more about organ donation and how English organ donation law is changing from spring 2020 at: https://www.organdonation.nhs.uk/