My name is Tony Croft and I've got wild-type Amyloid TransThyRetin, (ATTR) which is one of the two classes of amyloidosis: the ‘wild type’- “wt-ATTR”, is the one that I've got. There is also a hereditary form - “h-ATTR”.
My journey started 20 years ago with a lot of issues with my tendons. I've had multiple carpal tunnel, finger and thumb band release surgeries throughout those 20 years. I've had peripheral neuropathy in my feet and hands, I've had bicep tendon issues, where the tendons have ruptured, shoulder issues with the tendons, repeated dislocations and a lot of the symptoms, which now looking back, were wt-ATTR in its early days.
My real issues started in 2018 when I went to Kew Gardens. On my way to the Pagoda, I couldn't even get up the steps to the entrance because it felt like so much effort. I was putting it down to the heat and I really wasn't sure what was going on, I was out of breath, and feeling generally unwell with overwhelming fatigue getting progressively worse. When I returned home I got an appointment at the GP, because I was really feeling very rough. I walked in to see our GP, who just took my pulse, sat me down and he said, ‘I don't want you to panic, but I'm just ringing 999, because I think you're having a heart attack’.
The ambulance came, I was whisked off on blue lights, straight to Glenfield Hospital, Leicestershire Cardiac Emergency Centre. I was admitted and they initially thought that I was having a heart attack, so they treated me accordingly and were very good in everything that they did. I was then admitted to a ward and I still had a fairly fast heart rate, because my heart rate on admission was at 220 beats per minute. My heart rate eventually reduced to about 110 beats a minute, at which point the consultant came to see me.
He went through all the notes and examined me. He said, ‘Well, I don't know who wrote this, but they’ve not quite got it right. There's something going on here that I don’t quite understand. You've got atrial fibrillation, but there must be a cause for that’.
I went to have a cardiac MRI because I had raised cholesterol, suspecting I had coronary artery disease. When I had the cardiac MRI, there was absolutely nothing wrong with my arteries, they were described as ‘pristine’! Next, I had an ultrasound scan and the Cardiac Sonographer doing the scan got the consultant down there because she said, ‘I'm seeing something strange in the heart wall. I can't work out what this patterning is’. So the consultant came and had a look. They sent my bloods off to the National Amyloidosis Centre (NAC), at the Royal Free Hospital in London. Another consultant then confirmed that I had indeed got this thing called ‘transthyretin amyloidosis’.
It was around this time, that the consultant suggested that I contact Cardiomyopathy UK, who I'd never heard of. I thought, ‘Well, what's that going to do for me?’. In fact, it did a lot for me, because I had somebody to talk to. I spoke with one of the Cardiomyopathy UK Specialist Nurses and I also spoke to the CEO, and he just reassured me what was going on regarding drug developments.
The specialist nurse was very supportive and talked me through how I was feeling, because I was absolutely at rock bottom. I was thinking, ‘Well, there's nothing anybody can do’. I felt like I was on my own, there was no hope, and I couldn't get any medication. All they could do was manage the symptoms. The worst thing you can do, as I found, is to go on “Dr Google”, because Dr Google really is a bad place because you're doing it in a very uninformed way and not looking at what's really going on. Every patient is different, each disease is also different. But Google gets the good, the bad and the ugly on there. I've learned that lesson now, it's one of the things that the nurse actually said, ‘Just don't look, because it's not going to help’, and she was absolutely right.
I found a lot of support from Cardiomyopathy UK. I've used the website and contacted the nurses for support in the early days. The more I've learned about my condition, the more I appreciated the comments that the nurse had made. I also joined the Cardiomyopathy UK Coffee & Catch-Up on Zoom, I've met some fantastic people who helped lift my spirits and have become firm friends. The Zoom meetings are sometimes serious and sometimes frivolous. I’ve even met up with a few in-person.
I went to the National Amyloid Centre in January 2020. It was there that I had the opportunity to volunteer in a 3-year clinical trial based in Birmingham. I’ve just come to the end of that trial in March 2024. I don't know whether I've been on a placebo or an ‘active’ drug, but I've had quite a journey in the meantime. I would volunteer again for a clinical trial every time, because at least I'm being monitored regularly (every month). I’m also seen by the consultants who looked after me very well. It’s been a double-blind trial, but I'm going on to a two-year extension now, where I will definitely be on ‘active’ drug and the company will pay for my treatment during that time.
Early in 2021 I suffered a complete heart block when the amyloid had caused disruption of the electrical pathways in my heart. After investigations, I was fitted with a pacemaker in March that same year. This helped to stabilise my heart rate and I began to feel a lot better. I was still restricted by fatigue and breathlessness, but I was back walking 10,000 steps a day.
Unfortunately, COVID struck us over Christmas 2022, and I went downhill very rapidly after that. So 2023 has been a bit of a battle for me. I blame COVID for it, because it's the one trigger point that occurred for me. I'm now in stage three heart failure as a consequence of COVID, along with lots of tendon-related issues again. The National Amyloid Centre have changed some of my medications recently and that has helped considerably. I’m hopeful that other things are going to happen in the near future, as new developments are coming along all the time now.
I've had an awful lot of support from Cardiomyopathy UK. Things like Coffee and Catch-Up have lifted me up in spirit when I was at my lowest point. I just can't thank the people in Coffee and Catch-Up enough. The one thing we all share in common is our heart issues. They have a lot of “heart”, when one person is down, the others will support them. We talk about all sorts of silly things, but it helps lift your spirits because we're all in the same boat. That means an awful lot when it’s somebody who's got an equally debilitating disease of some sort. I’ve made a lot of really good friends through Coffee and Catch-Up, which has helped me psychologically. When you've got nobody else to turn to, you can turn to them.
I’ve also had great ongoing support through the Cardiomyopathy UK nurses and staff.
I must also say a huge “Thank you” to my long suffering Wife of 53 years, Anne, who has supported and looked after me all the way through all of this difficult time.