In his blog, Andy writes about his late wife Leigh's life and her time spent at Royal Brompton Hospital. 

Leigh’s journey with the Royal Brompton started when she was about 8 years old, following tests and investigations it was discovered she had what was called a ‘hole in the heart’.

Other than her telling me of some of the lung function tests she used to have to go through I knew little about her health story prior to us getting together in the summer of 1998 but once we were together, I accompanied her to the hospital for all her appointments whether as an outpatient or inpatient.

When we started dating Leigh filled me in about her health and make it clear that I understood what was involved before I committed to being with her-but by that point I was hopelessly in love with her! She told me that she had Eisenmenger’s disease, pulmonary hypertension and a ventricular septal defect (VSD), in my eyes none of this deterred me from my desire to be with this inspirational young woman and we went from there and our relationship blossomed.

It was always so humbling to sit in the waiting area of Outpatients West alongside such poorly but courageous people, those Outpatient visits were always memorable as it was good to meet up again with the clinical nurse specialists and doctors who Leigh was under and although she hated doing it she always did relatively well on her 6 minute walking test, an amusing part was the blood test she would always have, the guys in the Phlebotomy department would always be laughing and joking putting patients at ease-we used to call them the vampires!

Leigh’s regular check-ups remained relatively uneventful for some time until it was discovered she had something called Sarcoidosis, to be honest I still don’t really understand what that is.

Back to her PH and Eisenmenger’s her doctors were for some time encouraging her to begin therapy to help with her oxygen and exercise capacity, but Leigh was always of the opinion that she didn’t want to become dependent on medication until she had no choice-she did use home oxygen but didn’t consider that as medication.

It was about 2015 when Leigh started getting irregular heartbeat and it was thought best to come into the Brompton for a few days and she started Bisoprolol betablockers-I stayed with her but was sleeping in a posh B&B in South Kensington! She stayed fairly stable for the next couple of years but then she finally admitted to me that she knew she was getting slower and more breathless, this finally made her admit to her team at the hospital that she was ready to go on the therapy they had been proposing. It was agreed that she would go in and begin the treatment under supervision, as there were no ill-effects she was discharged and we left, the benefits were very quick to see and although limited they did improve her oxygen sats and lowered the pressure in her heart and blood vessels.

In early May of 2018 Leigh began coughing up blood one night and I rushed her to the Royal Surrey County Hospital where after extensive testing it was discovered that she had contracted pneumonia and also a large pulmonary embolism was discovered on her right lung, this really knocked her back and Brompton advised that she needed to go onto anticoagulants to prevent further clots.

Unfortunately, Leigh’s mobility had suffered as a result of the embolism and by the summer of 2018 needed a wheelchair if we went out shopping or anywhere where any amount of walking was involved.

As if she didn’t have enough to contend with she was sent at the beginning of 2019 to St Thomas’ in London who were investigating an issue not related to her heart/lungs and following CT scans we were told that a small tumour had been discovered on an adrenal gland, we were assured that these were usually benign and not a concern although further testing was required to determine that it was benign, weeks passed and numerous tests were carried out and it was in early July that we received the devastating news that the tumour was malignant, the consultant felt that because of Leigh’s PH she was unsuitable for surgery and that in his opinion chemotherapy wouldn’t work either.

Leigh being Leigh and with our full support sought a second opinion on chemotherapy treatment and we were pleased when we were told that a specialist at Kings College Hospital in London had agreed to see her.

At our first appointment he informed her that the tumour was the cause of her severe fluid retention-something he said was called Cushing’s disease, he prescribed a drug to combat the Cushing’s and we left for home.

Leigh had been taking this drug for a couple of weeks when she became ill over the August bank holiday weekend in 2019. We contacted Brompton who felt she should go in immediately and we arrived on the bank holiday Monday, as usual the team on Paul Wood ward carried out tests in the usual efficient manner and they found she had pneumonia again and meds were started to combat this.

It was at this time that Leigh went into kidney failure, Brompton consulted Kings College and it was decided that the meds that Kings gave her were the cause and these were stopped immediately, after a few days her kidneys returned to normal and Kings suggested an alternative, by this time it was clear that Leigh was going to be in hospital for a while so I began staying in Brompton’s accommodation.

Leigh began the second treatment but that affected her kidneys even quicker than the first and she became very poorly-so much so that it was felt she should be moved to Elizabeth ward (HDU) where her oxygen supply could be increased, Leigh was there for about a week before Brompton felt she was well enough to be discharged.

We then returned to Kings where the guy there decided the only option left for her tumour was to start tablet chemotherapy as soon as possible, so Leigh began the chemo and on a subsequent check-up visit on October 25th 2019 she was informed that the dose was very low and it would be some time before it was known whether it was working, that day was so hard on her as her condition had rapidly gone downhill and on leaving the hospital Leigh passed out briefly once we had got her in the car, she came to and after being checked by a paramedic we left for home.

The following day I noticed her oxygen sats were very low and I sought advice from Brompton who said it was best for Leigh to go to the Royal Surrey and await transfer up to Brompton, whilst in the Royal Surrey on the Saturday night (26th October) Leigh’s condition worsened and her oxygen levels were fluctuating between 0 and 20%, the doctors and nurses fought to help her and I sat holding her hand all night, at around 4 am it was decided she needed to transfer immediately to Brompton and an ambulance was arranged.

It was whilst she was being taken to the waiting ambulance that the team noticed something was very wrong and after being ushered into a side room, I was told that Leigh had passed away at 5am (October 27th), she was 2 months short of her 49th birthday.

I would like to take this opportunity to thank all of the staff at the Royal Brompton Hospital for their dedication and loving care given to Leigh throughout her life, they truly are wonderful people and I will never forget what they did for us, truly a debt that I could never repay.

Leigh was a truly wonderful loving lady who was so courageous especially at the end, I am so humbled to have spent 21 wonderful years with, her, 19 years married, I love her so much and losing her has left me broken hearted.

Rest in peace darling, I will love you forever.