Maisie Weir’s Heart Valve Disease Story

During the first national lockdown in 2020, Maisie Weir noticed herself getting breathless while walking in the Yorkshire hills with her friend. After being urged to see her doctor by her friend and her husband, Iain, Maisie was diagnosed with severe aortic valve stenosis and told she required urgent intervention. In January 2021, and despite the pressures COVID placed on the health service, Maisie received her life-saving treatment.

This is her story:

“My story started in February of last year when my entire family were really unwell. I had this constant, dry cough after, and it never really went away. I thought we all had COVID; to be honest, we were so bad. I was in bed for five days in the end, which is totally unheard of, and so was my husband, Iain. After that, it left me with a cough, and that never went away.

I started to notice other symptoms with my walking friend. We go on walks once a week. In West Yorkshire, it is very hilly, and I was having problems on the hills. I was having to stop and tell my friend to slow down. She was saying, ‘for goodness sake, Maisie, will you go and get that seen too.’ And I thought, yeah I suppose this does need checking.

It took me a while to go because I’m normally quite fit for a 66-year-old, and what I started to do was think I was becoming unfit. My walking is my happy place, and it was impairing that, so to improve my fitness I decided in March 2020, during the first lockdown, to do the Couch to 5k challenge. I did it up to Week 7 when you jog for 20 minutes, and I could not break that time. One day as I was pushing myself, having tried Week 7 twice, because I was taking it seriously and was not going to pretend I hadn’t done it and go to Week 8. I had to stop and sit down on the side of the road, clutching my chest. I couldn’t breathe, my chest was tight, and I knew something was wrong here; this was not being older or unfit, I needed to get this sorted.

On July 3rd, I got an appointment to see the Nurse Practitioner at my local surgery, as my GP wasn’t seeing anyone due to COVID. I told her I had been experiencing tightness in the chest, palpitations, a cough and shortness of breath, and I was referred for an X-Ray, which I had 3 weeks later in Huddersfield. At first, they didn’t pick anything up, and I took it as that was ok. I didn’t go back till August 26th, after my husband and friend said ‘for goodness sake will you go back and get it sorted out again!’

The Nurse Practitioner then said the X-ray had shown an enlarged heart and called me to get an ECG and full bloods. The next day, she called me back because the bloods had a raised enzymes in, which she indicated was early heart failure, and I was referred to the rapid access heart failure team.

When I told my family, my sons, Jack and Tom, were shocked and stunned. It was like a time bomb. It was totally devastating. I looked up early heart failure, and I didn’t know where that came from, because just a few weeks ago I was running up and down the road.

I didn’t know what to do for that month. Was I going to have a stroke? A heart attack? I stopped looking after my grandchildren on my own because I was too afraid, not that I was able to see them much because of COVID restrictions.

Then, on September 5th I thought my heart was going to pound straight out of my chest. My heart just seemed to be out of control, and my mental health started to deteriorate. I was between a rock and a hard place, I couldn’t go anywhere, I didn’t know anything about heart disease, and I didn’t know where to get the information from. My friends and family were great, but they did know any more than I did. Up to this point, no health professional had listened to my heart.

On September 10th, I had an echocardiogram at Calderdale Hospital. A lovely man called Tony saw me walk in the door and said: ‘Well, let’s see what’s up with you then.’ After quite a long time doing the echo and letting me listen, he said: ‘There it is loud and clear, your murmur, your valve, your aortic valve stenosis.’ And that was when we realised I had severe aortic valve stenosis.

You’ve never heard anyone woop so high. I was cockohoop that I had something they could fix. It did wonders for my mental health to be given that lease of life. I knew there was a time bomb there, and I need to be treated, but I also knew I could be treated.

6 days later, I saw my Cardiologist as they had a cancellation. He said, do nothing. No lifting, walking, keep calm, don’t rush anything. Yes, you have severe aortic valve stenosis, but we can fix this. They needed to give me an angiogram and a liver scan and do all my other obs to get me ready for surgery.

I saw Mr Papaspyros at The Leeds General Infirmary on October 9th for my preassessment. I got the letter came to say I was on the list, so my heart sank when I realised the list was 16-18 weeks.

In time all my symptoms got worse. I was breathless just talking on the phone, my palpitations were quite pronounced and frequent, and my cough was out of control again. At that point, sometimes, my cough made me sick after eating. It was so bad.

I’d started to look up heart valve disease online and found Heart Valve Voice and the British Heart Foundation. On BHF’s website, I found a number to speak to a Cardiac Nurse. She told me about what was happening and what questions to ask. She told me to say to the doctor that all my symptoms are getting worse, and you need to be seen. ‘It’s very valid. You must tell them. You must not sit there and think it isn’t valid.’ So I did just that.

I phoned the surgery on January 5th 2021 and asked for a face to face because I wanted them to listen to my chest. He said I could come in at 4 pm, and I was seen by a young medic who was brilliant. She was magnificent, very thorough, did all my obs, got her stethoscope out and said: ‘Wow, I can hear that loud and clear.’ She contacted Leeds General Infirmary to get me pushed further up that list.

Leeds phoned with a date for me, and when they called, I hadn’t realised it was the Nuffield private hospital they would be treating me at. They said they had the date for January 27th. To self isolate in preparation, and for Iain to do it too. I went for preassessment on the 12th, where all the swabs and tests are done, and Iain waited in the car for me.

Then on the 15th, they rang and said I was MRSA positive!

And that was quite a shock. They said it may have something to do with my eczema, which was bad on my hands at the time. They always swab you, and if you have MRSA, having heart surgery can be very dangerous. So they gave me a nasal ointment and a lotion to scrub my body and hair with, to treat the MRSA. So because of the regime, they had to put my date back by one day.

Three more MRSA and COVID swabs to do, that was such a white knuckle ride. I just wanted them to get me in there!

I had my surgery on January 28th. Mr Papaspyros came to see me the day before, introducing Mr Javangula, and said he would be back the next day to do my surgery at 1 pm. And said if he couldn’t do it, Mr Javangula would do it, and Mr Papaspyros said: ‘If I was going to have my heart operated on I would want him doing it.’

I had spoken to him about the tissue vs. mechanical valve. I said I wanted tissue because I didn’t want to be on warfarin. He said that if he couldn’t find a small enough valve or it was too difficult, would it be ok to go with mechanical? We all agreed that if the option came, it would be mechanical. I was just so pleased to be here and having my operation!

The first thing he said to me after the operation was: ‘You’ve got a tissue valve.’ Because he knew how important this was to me.

I was amazed at how well I felt after the operation. I was up in my chair on the second day with tubes coming out of everywhere, looking like the starship enterprise with lights and gadgets. I thought they won’t ask me to start walking, but they did, and I was up on my feet that day! It was so good to feel the ground beneath my feet.

The team in critical care, well, there isn’t enough time here for this. Miraculous. Until you’re on the other side of it, you’ve no idea how much they do. They just knew exactly what I needed, they were like medical encyclopaedias. They were just immense. Luckily for me, I had never had to see that before, so to experience it was a privilege.

When I went to the ward, I missed them so much, they were just incredible, and I felt so safe having them around me. They were always there, their calming, soft voices. Even if you are half asleep you know they’re there, and it gives you comfort and the ability to shut your eyes and think ‘I’m in good hands here.’

They phoned Iain the minute I was out of the theatre, and at every move. On the second day apparently, I called him, but it was on a cloud of morphine so I’ve no idea what I said to him, hahaha.

I was discharged on February 3rd. Iain came to pick me up, and the first thing I did was breathe in cold air. It felt like the biggest drug ever, and that I had finally woken up and I think I was euphoric for the next 48 hours, I couldn’t go to sleep at all.

Now I feel huge positivity for a good recovery. I started a challenge on Strava walking around the house, and I put it on Facebook to raise money for BHF for the nurses who helped me so much when I was so unwell. I’m going back to that Week 7 Couch to 5K. I’m going to smash it!!

What can I say about Mr Papaspyros and Mr Javangula? It was so lovely having them at the end of my bed looking after me. I just kept thinking about how lucky I am. Both of them came to see me every day and made me feel safe and looked after. Mr Papaspyros, even though he works at Leeds General, he was at my bedside every day. Knowing they’re so committed, so professional and so caring despite everything they are going through in the middle of a pandemic. It’s overwhelming. I’m so grateful.

Now I’m home with Iain. I am looking forward to seeing Jack and Lauren, and Tom and Becky soon, and start my babysitting duties with Evan and Angus. I miss them so much.

Iain and I have now had our first COVID vaccines. It’s been over six months since we’ve seen our immediate family, and over a year for other family members and friends. It’s been a long hard journey.

I wanted to write this to get the message over to people to get themselves checked with a stethoscope if they have any symptoms like mine. It’s the simplest of checks, and it could save your life.”

Heart Valve Voice CEO, Wil Woan, said “Wow, ‘white knuckle ride’, really sums up that rollercoaster journey. Maisie’s valve disease story highlights the importance of recognising the symptoms of heart valve disease and listening to hearts. People need to know that if you experience breathlessness, dizziness and fatigue, think heart valve disease – and ask your clinician for a stethoscope check. Well done to Mr Papaspyros, Mr Javangula and the extraordinary staff in Leeds, for their continued excellence despite the enormous pressures they’re under. And thank you to Maisie for sharing her incredible story with us.”