Andrea’s Story

My story begins in October 2019. I was 27 years old when I was diagnosed with Bilateral Pulmonary Emboli. My symptoms came on very quickly. I went to bed on a Tuesday night feeling fine and woke on Wednesday morning feeling extremely exhausted. I presumed I was coming down with a bug. That evening I found myself very out of breath going up the stairs, by the time I reached the top of the stairs I could feel my heart racing and needed to sit down. The next day in work I was bending down to tidy up toys when I felt very light headed and dizzy, again I needed to sit down. For ten days I experienced breathlessness and a racing heart especially when going up the stairs and carrying my nieces and nephews. I also struggled to breathe while speaking and found myself coughing at the least exertion.

I knew there was something odd going on but not once did a clot cross my mind. My mother suggested going to my GP which I did nine days later. My GP prescribed an inhaler and said she would refer me to a respiratory consultant and would be in touch the next morning with the name of the consultant. The GP rang the following morning and asked could I go in and see her again. Luckily I was off work that day and went in. She said she was after thinking about me overnight and thought it would be best to go to A&E to get checked out.

When I went to A&E on the Friday afternoon they performed an ECG and took blood. The blood test revealed my D-Dimer levels were raised. I was started on Heparin injections after the results of the blood test. The doctor explained that they suspected I had a clot in my lung but couldn’t carry out a CT to confirm it until the following morning. The doctor sat down and had a long discussion with me and he made me feel quite at ease. He explained if it was a clot that the treatment would be to continue on the injections and then switch to tablets when I was discharged from hospital. He said they needed to do an echo on my heart also but with it being the weekend it couldn’t be done until Monday morning. I had the belief at that stage that I would be discharged on tablets early the following week and advised to take it easy for some time.

My at ease feeling faded the following afternoon when the doctor came with the results of the CT scan. He explained that the scan confirmed I had a clot in my lung but it was much larger than they had suspected with my symptoms not being that severe. He said he was going to ring St. James’s Hospital for an opinion on whether they thought I would need surgery to remove it. This upset me and for the first time I realised the severity of the situation and felt very frightened. I had a very large clot on the left side of my left lung and a regular sized one on the right side of my left lung. I was moved to The Coronary Care Unit and hooked up to a machine which monitored my heart rate, oxygen levels etc. I was told to stay on bed rest and I was wheeled in and out to the toilet. St. James’s didn’t recommend surgery as they deemed it too risky.

On the Monday morning, I had the echo of my heart completed. I was not allowed travel down for this. The machine was brought up to my bedside. The echo showed that parts of the large clot in my lung were present in my heart. There was also part of the clot in a major artery from my heart to lung. The nurses stressed over and over again how lucky I was not to have collapsed. Again things changed after the echo, I was no longer even allowed a wheelchair to the toilet. I was now only allowed minimal movement. As a 27 year old young girl I felt like all my dignity had been taken away and again I became very upset. I had a Doppler Ultrasound completed of my legs and much to my relief nothing showed up. I also had a CT of my abdomen performed which thankfully didn’t show anything either. My heart rate was still very high and when I laughed or ate, alarm bells would go off on my heart monitoring machine.

After eleven days of bed rest and heparin injections, twice daily, I was re-scanned. I had the hope that things would have improved and I would be allowed home to rest by the end of the week. The scans showed there had been no improvement in either my lung or heart. I felt deflated as I had been optimistic that there would have been some improvement by this point. This news upset me once again and I also felt very lonely at this time even though I was lucky enough to be surrounded by visitors, day and night. At this point the doctors looked for an opinion from The Mater Hospital. They advised to continue on injections and rest as it hadn’t been that long from onset of symptoms and they wouldn’t be worried about not seeing an improvement yet. 

I was allowed walk to the toilet after two weeks of complete bed rest and I’ll never forget the strange feeling of walking. It felt so unnatural after only two weeks, my knees even cracked! After this I was slowly allowed go for a stroll downstairs with a portable heart monitor attached to me. I was gaining back a small bit of independence which felt good.

After three full weeks I was discharged from hospital. On the morning of my discharge I had to do a three minute oxygen walk test, which meant my heart rate and oxygen levels would be monitored while I walked very slowly from one cone to another. My heart rate was still very high during the walk test but it recovered quite quickly when I sat back in the wheelchair which they were happy with. The doctors explained to me that it was normal for my heart rate to be high as the clots were putting extra pressure on my heart and I would have to remain taking things very easy. I was allowed home on the condition that I wouldn’t walk up the stairs for at least two weeks. I was switched from injections to Apixaban tablets twice daily on discharge. I felt so happy and relieved to finally get home but on the other hand I felt very anxious as I was still quite frightened of my condition and also no longer being closely monitored by professionals.

Once I got home I felt very content as all I had wanted was to be at home but I also felt quite sad thinking back and processing everything that had happened. I was going from feeling so thankful and lucky to have survived to feeling so unlucky that it happened to me. I still battle with this to date.

I had another echo on my heart in early December and I met my consultant the week before Christmas to be told there was still no improvement. He stated that he wanted another CT of my lung before the end of the year. I had another CT the beginning of January which again showed the clot had not reduced in size. They were not worried about the clot breaking off and moving anywhere, or getting larger, because the tablets were preventing that which was a comfort. I still felt the exact same as I had in October. It took me about ten minutes to get up the stairs, I couldn’t lift my nieces or nephews (or anything heavy for that matter), I still had to pause to take a breath while I was speaking, exhausted, and I also felt a lot of pressure in my chest if I bent down or sat in a slouched position.

Mid-January 2020 I put on a pair of boots and noticed the left one wouldn’t fully zip up. I then went to the mirror and noticed my left leg was substantially bigger than my right. I asked my mother and father what they thought and they agreed that my left leg was larger than my right. Automatically I was terrified I now had a clot in my leg, I also knew the chances of this would be very slight because that’s what the tablets were preventing. Two days later my heart rate had gone very high again so I went back to A&E. I had myself wound up thinking that there had been a clot in my leg and it had now moved.

When I presented to A&E I explained what had happened throughout the week and I also stated that I didn’t know whether I was being dramatic or not. They took my case very seriously and had me in a bed within about an hour. I had another CT of my lung performed which showed there was no new clot but there was still no improvement in the existing clots. It was Friday evening so a Doppler of my legs couldn’t be completed until Monday. My consultant happened to be on call and he came to speak to me and admitted me back to Coronary Care. The Doppler ultrasound showed on the Monday that there was no evidence of a clot. I had a temperature which they said could explain the heart rate once again being very high. They measured my legs and my left leg was 3 centimetres larger than my right. This was a new symptom with no real explanation. I had a cardiac MRI done which showed that the pressure had started to reduce somewhat in my heart. My first bit of good news. I was discharged after a week this time with the same advice of taking it easy. At this point it had been going on for 3 months so I was referred to The Mater.

I had an appointment with a Professor in The Mater in early March and he explained to me that 95% of people clear a clot within 3 months and then for the remaining 1-5% it could take up to a year for their bodies to clear it or their bodies might never be able to fully clear it. He expressed that after the year mark if the clot had still not fully gone the option would be there for me to fly to England and have it removed. I told him how nervous I would be about that option and he explained that it would be fully my choice if I would be happy to live with it, and be limited in some regard, or to go and have it removed. He requested a VQ test and a Right Heart Catheterisation but due to Covid-19 I am still awaiting these tests. I am due to have a Transesophageal Echo in three weeks and expecting there to have been an improvement in my condition.

From around mid-April, I feel a lot better in myself. I am able to go for walks again, I am much less breathless and my heart rate has seemed to settle for the most part. I somewhat feel nearly back to normal. My journey has not finished yet as I am still awaiting tests but I am very optimistic that the tests will show a massive improvement. While I physically feel a lot better, it’s left a very significant mental impact on me. I feel nervous if I get the slightest twinge or if my breathing isn’t as good as previous days etc. I also have a major worry of this happening again and not being so lucky if it was to happen in the future. For now the doctors are undecided if I will remain on tablets for life or not. In one way I would love to not have to take blood thinners day and night for the rest of my life, as that in itself is a worry, but on the other hand I can only imagine the anxiety of going off them and living in even more fear of history repeating itself.

The only risk factor I had was being on the pill. However, the doctors don’t seem to think that this is what caused my clots. My symptoms were never so severe that I could have imagined I was as sick as they were telling me. I urge anybody reading this if you experience any symptoms such as shortness of breath, a racing heart, pain in the chest, dizziness, etc. to get checked straight away. Even if you feel that your symptoms are mild, it is so important to always get these things checked. I have been very lucky. I hope in writing this it will highlight that blood clots don’t discriminate and they can happen to anybody, regardless of age.