As a 25-year-old woman, the thought of open heart surgery, for some reason didn’t seem that daunting to me. It was something that had to be done, it was something that, in the end would be the best for me, and after such a long road to my diagnosis and doctors it was a relief. It was a relief to have someone tell me I wasn’t mad; my symptoms weren’t in my head and all my trekking from doctor to doctor was not all for nothing.
My story began when I was 6 years old at the usual swimming classes that I attended. After the class I turned pale and dizzy. My mam, at the time said I had swallowed too much water, as any Irish mammy would think ‘sure you’ll be grand!!’. As the years went on my symptoms were few and far between until I got into my teens. I had been competitively Irish Dancing for a number of years and the training was getting more intense. Almost every two weeks I would get my symptoms, only this time they had intensified. I would turn grey, my chest would tighten, my head would be so light I thought it was detached from my body and I felt nauseous. At this stage I went to my GP who sent me to a cardiologist. Nothing was found only a ‘slight irregularity with the electrics of my heart’, the doctor wasn’t concerned so neither was I.
The final straw for me came three years ago in the gym. At this point I had more and more of my symptoms and they were more frequent the more exercise I did. However, because my stubborn streak got the better of me there was no way I was going to stop my exercise routine. In the gym that day three years ago I decided it had to stop. I had just finished my workout, and as usual didn’t feel 100%. In the shower I go, and on come my symptoms, the worst I’ve had. I remember not being able to stand in the shower anymore and grabbing my towel off the door before I had to sit down. I opened the door of the shower hoping someone would help, sitting in the shower door wrapped in a towel women walked past, 5 women, all walked past while I sat stuck to the shower unable to get up. 5 or so minutes passed and I managed to get myself up and sitting on a bench. At this point my muscles in my arms were weak and I couldn’t see. Thankfully someone asked if I was ok, after explaining, that lady got my phone and I rang my mam to collect me. That was it, it ended here.
I went back to my GP the next day who agreed this had gone on too long. Again, he decided that cardiology was the best place to start, and that’s what we did, 3 times to be precise!!! My first cardiology trip to the Mater was positive. The consultant couldn’t have been more helpful and couldn’t have put me at any more ease. We arranged all the test, ECG & Stress test. After all these tests, and a few weeks waiting I went back to see him. Nothing was found. Another dead-end I thought, another doctor to think there’s nothing wrong. This didn’t happen and my consultant decided to dig deeper and arranged for an angiogram to happen. Another few weeks and I went for my angiogram. Having never had one before I didn’t know what to expect. I was given a sedative before the procedure, however, and this isn’t common to everyone, mine didn’t work. Wide awake, but the edge taken off, the angiogram was done. The nurses kept me talking while the doctors put the wires in through my groin. Don’t panic, it’s really not as bad as it sounds!!!
While recovering, the doctor came to talk to me and bingo! He found something. At this stage, he couldn’t be sure but he said something wasn’t right with one of the veins and we needed to look into it. On my repeat visit with him he was sure that something wasn’t as it should be. All he could tell me was that there was a backflow issue with my vein but he didn’t think it could be too significant so wanted a second opinion. During this visit, I remember looking at my mam and saying, “well I didn’t expect that”. After going to doctors in the past the result is always “mmm we’re not sure but it’s probably nothing to worry about”, after not getting that response we had a new journey to go on. Again, we waited for an appointment for doctor number 2.
After about a month or so we got our appointment, I say ‘we’ because my mam has been with me at every appointment so part of me feels that she has been through this too. With hope and apprehension, we went to see doctor number 2. After stepping into his office, I had a different feeling than the first doctor. He did an ECG, then, in short, told me there was nothing wrong and I didn’t need to be there. With tears in my eyes we left his office. Never had I felt so let down by a doctor, and never had I felt such disappointment. We waited another week or so. At this point my symptoms were happening probably every week and I was ready to give up. Maybe it was in my head, maybe there was nothing wrong, after all the doctor can’t be wrong!!
I had long talks with my mam and boyfriend and they gave me the encouragement to keep going. And in my gut, I knew this couldn’t be the end. So, my GP got another visit from me and he was on my team. He, again didn’t want to stop the cardiology route so I went with him. And this time we found the consultant who would come to my aid. Never had I had so much confidence when first meeting someone, never have I looked into someone’s eyes and heard what they had to say and instantly think ‘he can help’, it was the best feeling in the world, and whatever he said I would do. My consultant agreed that there was something wrong in the heart, but wanted to rule out everything else first. We went to three other consultants on his advice about different things to rule out. As each of them were ruled out we started looking more and more at the heart problem. Another angiogram was ordered, this time I would be awake, and would need to exercise during it.
Honestly this angiogram was the strangest situation I have ever been in!!! Angiogram, fine, been there done that. Angiogram with exercise now that’s a different situation. I got over the uncomfortableness of the angiogram, and then they brought in the bicycle pedals. Two pedals and the end of my bed that I had to scoot down and put my feet in. Cycling I can do, an angiogram I can do, cycling during and angiogram was a strange thing……… did I mention I was in a gown with no underwear on!!!!!! Strangest. Situation. Ever. Anyway, it was done. And we had a result. The doctor came to me in recovery and said the backflow that was first found was too much to leave alone, there was also an issue of a narrowed vein and the vein from my pulmonary vein was routed in the wrong direction. PAPVC, was my diagnosis. Finally, after three years I found my answer. And although I knew this meant a major operation and long recovery, relief washed over me. All this searching wasn’t in vein… pardon the pun!! All my time with doctors, and hospitals and tests wasn’t for nothing, and I wasn’t going mad!