Kirston Clulow describes the physical and emotional anguish involved in a heart transplant, urging those who plan to offer their organs to share their wishes with loved ones before registering at NHS Organ Donation
WHEN I was three months old, my dad took my brother and I to see our GP as we were all suffering with terrible colds. The GP picked up something he thought was a heart murmur and referred me for some further tests. Following checks, I was diagnosed with Hypertrophic Cardiomyopathy (HOCUM) and two leaking valves.
At school I was never allowed to take part in sport or go on school trips. Luckily, I always kept myself fit and healthy, enjoyed being outdoors and had a good circle of friends. My poor mum had to manage my expectations and keep me safe.
At ten, I had my first surgery at Newcastle Freeman Hospital to remove some muscle blocking the blood flow in my aorta. The operation was a great success. I still had two leaky values and atrial fibrillation but medication and check-ups kept me enjoying my teenage years.
Despite missing first year at secondary school due to surgery, I did eventually start secondary school and achieved good GCSEs. I even tried out and was selected for school hockey team but doctors later advised that wasn’t such a good idea sadly.
The surgery was such a success my health improved enormously. Reviews were reduced to annual check-ups with the daily medication.
My love of the great outdoors kept me fit; walking and jogging with challenges including the Great North Run, walking the Three Peaks, Hadrian’s Wall and Teesdale Way. I got married and had two beautiful children and qualified as an accountant.
Sadly, in July 2012, aged 39, I collapsed. I had to make some tough life choices. I left my job and with the support of my consultant applied for retirement due to ill health.
Following discussions with heart specialists across various specialist hospitals, decisions were made regarding the best care and next steps. This was when a heart transplant was first discussed and I was sent for assessment at Newcastle Freeman Hospital.
In 2016 I had a defibrillator fitted. Transplant assessments became more frequent and in September 2019, I went on the active transplant list.
You don’t really appreciate the impact on your family until you have to sit down and plan, think and organise what needs to be in place when “the call” comes.
In February 2020, that call came at 3am – a possible donor. It was a crazy mad dash up to hospital as they wanted me there by 6am and ready for surgery by 11am.
Then, following checks, the donor heart was not right and operation was cancelled.
Due to Covid the active transplant list was put on temporary hold, but on May 7, 2021, I was admitted into the Freeman Hospital and put on the urgent transplant list. Due to Covid, visiting was still restricted which meant I could only see my children, through a window. Not to be able to hold your loved ones was very difficult.
After 14 weeks in hospital I was emotionally exhausted and ready to discharge myself. Luckily my husband refused to come and collect me. The transplant team psychologist came to visit me daily.
Then, in August 2021, after 16 weeks and a day in hospital, I was woken in the early hours by one of the night shift cardiac nurses with news of a possible donor.
Transplant co-ordinators sprang into action, followed by visits from anaesthetists, surgeon, consultants and lab technicians (I was donating my heart for medical research).
At 11am it was all systems go. My poor hubby and I didn’t really get much time together and I’m sure I said something stupid like “See you in a bit” before being whizzed off through the doors.
And I don’t have much memory until waking up a few days later in intensive care.
I think it’s fair to say I didn’t make it easy for the surgeons.
My heart was very poorly which caused quite a lot of issues and I had a stroke during surgery. This meant the donor heart wasn’t plumbed in until the early hours of next day.
Due to the length of time in theatre and the pressures within the chest, they could not close my chest until the following day. I spent ten days in intensive care.
Some patients feel an instant improvement following transplant. I didn’t. I felt like I’d been hit by a truck. Due to the stroke, I was on a feeding tube through my nose. I lost my voice due to the tubes.
But four weeks post-transplant, they let me go home (with a small suitcase full of medication to last me until a clinic two days later).
And so, the slow recovery journey began, step by step one day at a time. Sleeping in your own bed was Heaven, but I felt scared being home and away from medical support staff.
I was a blubbering wreck for months afterwards. The emotions such a gesture brings are indescribable – thankful and grateful yet overwhelming sorrow for the donor family all at the same time.
I’ve created a rose garden in memory of my donor which has helped with my emotional recovery. It is a place to spend time and give thanks every day. I know a little regarding my donor – my beautiful angel.
The first six months of recovery were very hard. I signed up at my local cardiac rehab clinic. I was their first transplant patient so we just learned together as we worked through the programme.
My love for the outdoors led to my first challenge post-transplant. I walked up Roseberry Topping and two of the cardiac nurses from rehab clinic came with me. The cardiac clinic gave me the confidence to go outside on my own and I started to drive again.
I still needed a lot of physio due to nerve damage on my left side following the stroke so I started swimming to try to help improve my mobility. Swimming also improved my cardiac fitness as well as strength in my left side.
One year post-transplant it was time to choose my next challenge. I signed up to take part in the British Transplant Games, in Coventry, in July, swimming 50m and 100m.
I learned to swim the front crawl from scratch, swimming with head in water and breathing without swallowing half the pool. Family and friends even more crazy than me came swimming training with me.
Sport, I’m finding, is playing a big part in my recovery and if by doing so I can raise awareness and benefits of organ donation it will hopefully give people the opportunity to talk with their loved ones about their wishes.
I will not recover the level of fitness I had when I collapsed in 2012.
However, my quality of life has improved beyond any dreams. Annual challenges are back, I’m out enjoying our wonderful countryside – just with some little life choice adjustments.
At two years post-transplant I’m already thinking about what challenge to do at the Heart and Lung European games and maybe, fingers crossed, tackle the Yorkshire three peaks again…
When I went onto the active transplant list in Sept 2019 I needed a walking stick and couldn’t walk more than 50m without being out of breath.
I needed help getting dressed and I couldn’t go outside on my own, completely different to the lifestyle I’m enjoying today.
When you are lucky enough to have the offer of a transplant, there is an overwhelming desire to do your best – eat healthy, exercise, live life to the best you can to give thanks and honour your donor and their family for this precious gift.
The emotional recovery can be just as difficult as physical recovery. I think having a health condition from such a young age had given me some important life skills such as having the resilience to handle difficult life changing situations, the discipline in taking medication and the ability to adapt to constant change.
Wow, it has been a long journey.
