38-year-old Caoimhe was five weeks away from her wedding, planning furiously while juggling a busy job. Her body was beginning to send her some signals that things weren’t right, which led to a life-changing diagnosis she could have never expected.
“For a little while, I’d been having what I’d describe as heart palpitations. I was always aware there were some heart issues on my Dad’s side and it was something that played on my mind. I’d had it checked out… and had tests on a number of occasions… but nothing serious was identified.
“In March 2023, I started to have a gut feeling something wasn’t right. It was a busy time as my fiancé Eoin and I had both started new jobs and were planning our wedding for that summer. I didn’t feel anxious or nervous about the new role. However, I started to feel really tired and exhausted all the time. I’m usually a very active and energetic person but I began to feel extremely fatigued even after a good night’s sleep. I was even starting to modify my behaviour, like avoiding the stairs in work, to try to conserve energy.
“I had a colleague who’d had a check-up with the company GP and was diagnosed with anaemia… and I started to think, could that be what’s wrong with me? However, on seeing the GP, she was very concerned. She said my heart was beating far too fast. She insisted I go to A&E straight away… I admit I was shocked… I thought it surely can’t be that serious, and that they’d send me home from A&E for wasting their time!
“As I live in Stoneybatter, I went straight to the Mater’s Urgent Cardiac Care. They took my bloods, and took them again with a wider panel, because they looked so abnormal. They wanted me back the following Monday for an MRI. When I arrived that day they kept me for five days… monitoring, testing and looking for a cause. I had two MRIs to investigate my heart.
“I now know that a multi-disciplinary team in the hospital began reviewing my case and on the 20th June there was a breakthrough. I was actually having a pre-wedding facial when the call came through – ‘my colleague wants to bring you in tomorrow morning for tests in an area that he’s a specialist in’. I think even at this stage I thought I was going to be told I had a heart rhythm issue.
“I never in a million years could have imagined the diagnosis I received when Dr Giblin phoned me: I just remember saying to him, ‘Yes I can come in for some tests but I’m getting married in 5 weeks’. He was so unbelievably kind to me but obviously he knew even at this stage that there was no way I was well enough to be getting married in 5 weeks!
“Things moved like lightning from there… I had a bone marrow biopsy straight away… and then Dr. Giblin, who had identified the potential issue, confirmed the diagnosis of AL amyloidosis – a rare condition where a protein called amyloid builds up in your body and deposits in your organs, meaning they don’t function normally.
“I was in hospital in the CCU for 8 days where I was monitored and due to how serious the diagnosis was I had to start treatment (chemotherapy) immediately. Although at present there is no ‘cure’ there are extremely effective treatments which can stop any further damage and hopefully in the future there will be a breakthrough to reverse damage done. AL amyloidosis is an extremely rare condition and mostly diagnosed in people over 60. I’m the youngest patient to be diagnosed with it at the Mater. Most GPs will never see a case of it in their career.
“It was like an out of body experience – I was so scared and struggling to process it. Everything was out of my control. The first weekend in hospital after diagnosis was the worst time of my life. I couldn’t believe that at the start of the week I was finalising the wedding plan and now I was having my entire body biopsied!
“Throughout everything I have to say that the staff in the Mater have been incredible. – I felt really safe there, they moved heaven and earth to find out what was wrong with me… and from the doctors to the nurses, the admin staff to the catering staff, they have an in-built kindness and could just never do enough for me.
“The first weekend in hospital in the CCU, all of the nurses and doctors spent so much time with me reassuring me I was going to be looked after, and they were so kind to Eoin and my family. The Mater is such a special place and I don’t think I could have had better care anywhere in the world 🧡. I am never ever sad walking in the doors of the Mater which is a testament to how special the people working there are. I will be forever grateful.
“My treatment continued with chemotherapy and immunotherapy because amyloidosis is similar to multiple myeloma, a blood cancer as it impacts the bone marrow. After 6 months of weekly chemo, I have now moved to monthly treatment. In September 2023, I had an implantable cardioverter defibrillator (ICD) fitted to control a dangerous heart rhythm that was detected and prevent potential cardiac arrests. I was absolutely devastated when I found out I needed the ICD but now I am so grateful and think of the ICD as my best friend watching over me!
“Of course, the wedding had to be postponed and my whole life changed completely… but through it all my fiancé Eoin, my family and friends have been an amazing support. At the moment, I’m in a positive place. I know there is no cure for my condition but there can be long periods of remission and with new drugs being developed all the time, I remain extremely hopeful and optimistic and thankfully my heart is doing really well.
“For now, I’m back to exercising, and trying to do everything in my power to be as healthy as I can. I feel I’m moving into a new stage, trying to reclaim my life and happily we have been able to finally reschedule our wedding for 2025.”
Caoimhe O’Reilly, Dublin