My story began on March 30th 2022 when I was diagnosed with multiple pulmonary embolisms (PE) on both my lungs. I am 43 years of age mum of two older girls. I work full time in retail banking, and I have gone back to college part time every second weekend since Sept 21. I would have considered myself active, I am a non-smoker and regarded myself as healthy and well.
I tested positive for Covid-19 on 7th December 21. I was very unwell from day 1 to be honest, I had a raging temperature, aching body, horrible nausea like symptoms I lost both my taste and smell by day 3 and had ongoing migraine like headaches throughout the three weeks, I was very tired, I could sleep most of the day and night but still felt like I had not slept at all. I had no energy it was a task to make a cup of tea. Christmas came and went, and I still had no sense of smell, but my taste had begun to return all be it in a somewhat distorted way. I still felt extremely fatigued, but the other symptoms had subsided, so I went back to work. This was Dec 30th.
After about 2pm I began to feel very short of breath and this continued for a hour or so to the point where I could not speak to the customers at the counter, I knew something was not right so I contacted my GP who said she would refer me to hospital just to be sure. I attended the acute a&e and obviously a covid test was completed. I tested positive but the hospital were able to determine my results were from my historic Delta covid case, my heart was tracked and bloods were done, a chest Xray was completed and I was told my results were clear and I was discharged on new year’s eve still having the breathing issues. This continued for a few days until heart palpations gradually started out of the blue. I had them for exactly 6 weeks sitting or standing without doing anything excessive, so I returned to my own GP who referred me to a private cardiologist who got me to wear a Holter monitor for a day and a night, he then advised that no significant arrhythmia were found in my tracking. I felt disheartened as I knew I was not right, but at this stage I felt I just had to get on with things, return to work and hopefully these long covid symptoms would ease this was the end of February.
My partner had got us a trip to New York for Christmas and to be honest been unwell I never really comprehended the timeline, so I was nearly on the flight before I knew where I was, part of me wanted to defer the trip to later in the year but the other part was excited to go as I had never been over before. So, we flew out on the 9th March on what I could only describe as a turbulent flight for 4 days of sightseeing packing in as much as we could possibly see and do in the city that never sleeps. We walked a lot each day and at times i felt very breathless but put it down to my ongoing symptoms. I recall climbing some stairs in the Empire State Building to reach the top before sunset and literally holding onto the rail to pull myself up. I was completely shattered. We flew home the morning of the 14th March and I was back into work the following day as it was the lead into the new extended St Patricks weekend. I did a very slow 5k fundraising walk that was on from my local gaa club on 18th March but was really breathless during and after it to the point I had to stop. I then had college on the Saturday, and I was completely shattered. I felt like that for the full week that followed along with having migraine type headaches which I assumed were my ongoing covid symptoms. I decided to try and clear my head the following Saturday morning, so I went to the beach to get some sea air which seems to relieve the headaches somewhat, I visited my eldest daughter at her home and helped her feed her horses. I had a dull type of pain in my left shoulder that evening but just assumed it was because I had been lifting buckets of feed and I was certainly not used to that type of manual labour. It was Mother’s Day, and I went for a bite to eat with my girls but still had this niggling pain. I went to work the following Monday and the pain was still there particularly noticeable driving the car, to and from work. I had started putting heat patches on my shoulder to see would it help, but I woke the following morning after a restless night sleep as I could not sleep on my left side, I just assumed I had pulled something in my shoulder. Tuesday was a busy day at work, and I felt similar. It was a lovely evening, so I asked my dad over to do the first cut of grass and I was clearing away any the small branches of trees that had fallen, but I still had this dull pain. I went to bed but awoke to a more stabbing like pain after 2am assuming I had made the pain worse been out in the garden, I took a pain killer but I couldn’t lie down flat as it seemed worse, so I propped myself upright with pillows. I must have dosed off but awoke again around 6.00am this time the pain had intensified and appeared to have moved further down my side. I called Westdoc, the nurse called me back and I told her what was going on. She said to take another painkiller and contact my GP when they opened as she said I may have pleurisy. I called my own GP and went to her surgery at this stage the pain was coming in waves like contractions, and it was hard getting in and out of the car and walking. I was able to lift my arm up as the pain was coming from my shoulder down my side but after listening to my breathing, she sent me straight to a&e as she feared I had a clot.
I was sent to the acute covid unit again when I reached the main hospital as I had shortness of breath which was from the pain, I explained I did not have covid and the nurse in the acute covid assessment was just so kind but obviously she had to rule it out alongside the standard tests, blood pressure, blood samples, they put me on the heart monitor and hooked me up to a basic painkiller drip, all I wanted at that stage was the pain to subside. The doctor on call asked me if I was taking any medication, I wasn’t other than the contraceptive pill which I had been on for almost 20 years without any issues. He sent me for a chest Xray while they were awaiting my blood results, I had to go in the wheelchair as I was unable to walk, my Xray was clear, but my bloods had shown my D dimer was raised. The doctor asked had I experienced any pains or swelling in my legs and had I been on any flights of late. I said I had been too New York and have been suffering from fatigue since as I had covid in December. He checked my legs for any swelling or pain, and they appeared fine, but he insisted I had a CT scan which then showed both my lungs were covered in small clots, but I had two enlarged clots on both sides left and right. He seemed quite panicked however I was quite calm I just wanted my pain to be relieved somewhat. I was admitted and started immediately on injected blood thinners into my stomach and thankfully they increased my pain medication. I had a negative covid test however I was moved onto a covid pathway and into a ward where i remained for 4 days. The pain was quite severe that first night and i was very afraid in the room on my own. Getting to the bathroom was very difficult and I was in terrible pain. I was for some reason been treated as if I had covid so human interaction was very limited. When the nurses did arrive in my room, they were fully gowned up and it was a quick check of my vitals.
The following morning, I was glad to meet the consultant cardiologist who told me I was a very lucky lady that my clots were very enlarged on both my left and right lungs. He told me he would be moving me onto an oral rivaroxaban on discharge and then I would be recalled and rescanned in three months’ time. He advised I would be having a full body CT scan before I would be discharged just to insure there was no further clots anywhere else in my body. I felt somewhat reassured that he had a treatment plan in place, but I was quite scared as the pain was still very much there. I was not allowed any visitors which in a way was good as I was so exhausted. I wasn’t allowed out of bed, and I was wheeled down for my scan on the Friday eve, this time I was terrified. It seemed to be the longest hour or so until my cardiologist arrived back into my room along with two other doctors. I was frozen with fear expecting the worst news but thankfully my body scan was clear, however my treatment was changed, and I was moved out to a six-month plan by the haematology team with a different anticoagulant apixaban called Eliquis. I was so relieved, however when the nurse arrived to remove my cannula I bled quite heavily, and I was kept in for another night. The following afternoon I was given paperwork about strokes to read and bring home, there was a piece on Eliquis in it. I was asked if I had any questions which I naturally had about bleeding however a lot of the answers were we will have to wait and see which was not very reassuring. I was handed a prescription and discharged. I felt on one hand very vulnerable leaving that ward but on the other very grateful I was walking out the door. It was a very strange feeling as if it wasn’t real.
Since been discharged I have been back to my own GP twice, I have had heavy bleeding which has resulted in me becoming anaemic along with feeling weak, dizzy, having restless legs and extreme fatigue but I am hopeful these side effects will subside over time. I do know I am very lucky, and I am trying to see the silver lining in it all, as it is giving me a chance to allow my body time to heal, to rest and become stronger before returning to normal life. I’m incredibly thankful to the nurses I met in that initial acute a&e unit, to my cardiologist, and my wonderful GP who remained in contact throughout.
As the days passed though I had more questions and needed to know more information on what had happened, and it was then I discovered Thrombosis Ireland and reached out to the number on the page. I can honestly say from that first message from Ann Marie and the subsequent information pack I received, the level of support has been great. To know I am not alone means a lot and to be able to interact with the other members around the country for support.
My journey with pulmonary embolisms is one I never expected to be on but If I can help in any way to raise the awareness of blood clots, I will certainly do that, in sharing my experience and some of my risk factors that were involved in my story.
I am thankfully one of the lucky ones that I am here to tell my story, however my message is simply this, you know your own body, and if you experience any ongoing long covid type symptoms such as any pain in your chest, shortness of breath or palpitations just go and get yourself checked out. It may well save your life.
Andrea
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