We may encounter many defeats but we must not be defeated – Maya Angelou
The Summer of 2009 came and Ireland was in the grips of the swine flu. Swine flu is a respiratory disease, caused by a strain of the influenza type A virus known as H1N1. The first case in Ireland was confirmed by the HSE in May 2009. Those of us living with compromised immune systems were nervous – I certainly was. There were a number of deaths from swine flu and it did eventually become a global pandemic.
So, it was against this backdrop of concern and swine flu hysteria in August 2009 that my second major setback happened.
It was the first day of our family Summer holiday on 4 August 2009 and we were making plans for a trip down the country. I had a scheduled check-up in Tallaght Hospital that morning with my kidney specialist. I left home early and got through the clinic promptly so I was back at home by lunchtime. There were no concerns with the kidney team so I was happy to be free of hospital visits for another few weeks.
About an hour after getting home I was sitting on my daughter’s bed chatting to her when I developed a sharp pain in my back on the left hand side. I didn’t think much of it at first. As I sat chatting to Emma the pain got worse and I thought I might have pulled a muscle. The pain got sharper so I quietly left Emma’s room and walked into my own bedroom. I tried to take a deep breath in but found that I was restricted and the pain felt like I was being stabbed. Cathal, my son, same into the room and I asked him to go downstairs and to tell his Dad to come up to talk to me. A few minutes later Bryan came into the room. He was immediately taken aback at my colour. I explained that I was having difficulty breathing so he called the doctor. They said to come in for 3pm but he said we couldn’t wait so the receptionist said to come immediately.
We left the kids at home in the care of a friend and we drove the short distance to the clinic. The doctor saw me immediately and she was very concerned. With all the talk of swine flu in the air, precautions had to be taken because I was in respiratory distress. She gowned up and did some tests. The pain on the pain scale was over 10 at that stage. I was struggling to get a single breath in and out and I was starting to panic. She gave me morphine for the pain but it didn’t do much for it. She also put me on oxygen which didn’t help much at all as I was really struggling to breathe. All of a sudden I threw up and then passed out momemtarily, breaking my glasses as I fell over. I came around and was really struggling for breath.
My doctor left the room and I knew it was serious as she was obviously talking to someone in the hospital and she did not want me to overhear. She came back in and announced that an ambulance was on its way.
The ambulance crew arrived all gowned up because of the risk of swine flu and I was readied on a stretcher – and also gowned up. As we left the doctor’s surgery we looked like something out of a disaster movie.
I felt that Bryan should go home to be with the kids as I did not want him hanging around the hospital until we knew what was happening.
I was terrified but everything happened so quickly and before I knew it I was in the back of the ambulance with the lights and sirens screaming through the town and up to Dublin.
My doctor had mentioned the possibility of it being a pulmonary embolism and I knew that was very bad news so in a way I was hoping I had swine flu. Bryan went home and googled Pulmonary Odema and scared himself as that meant lung and heart failure.
I knew what pulmonary embolism was. I knew that my friend’s mother had died in the ambulance on the way to the hospital. I immediately regretted letting Bryan go home.
Here comes the science bit about pulmonary embolism:
Pulmonary embolism is a blockage in one of the pulmonary arteries in your lungs. In most cases, pulmonary embolism is caused by blood clots that travel to the lungs from the legs or, rarely, other parts of the body (deep vein thrombosis).
Pulmonary embolism can be life-threatening. About one-third of people with undiagnosed and untreated pulmonary embolism don’t survive. When the condition is diagnosed and treated promptly, however, that number drops dramatically.
The most risky time for complications or death is in the first few hours after the embolism occurs. Also, there is a high risk of another PE occurring within six weeks of the first one. This is why treatment is needed immediately and is continued for about three months
The journey up seemed to take only minutes and I was terribly panicked the whole time. The paramedic was wonderful and was doing his best to calm me down but the feeling of not being able to catch your breath has to be one of the worst in the world.
We arrived at the hospital in Tallaght and while there was an urgency about getting me seen if it was a PE, there was also a strict quarantine and isolation system in place for suspected swine flu cases. I was whisked into a special room and anyone who came into see me had to have the gowns and the masks. It felt really surreal at the time.
Tests were ordered and I was whisked to the special X-ray area and had bloods taken. They erred on the side of caution and treated me with swine flu medication immediately. Then they began the tricky business of dealing with the suspected PE. I had to have a nuclear medicine scan with dye and contrast which confirmed the diagnosis of a Pulmonary Embolism. I was put on blood-thinning injections immediately.
I was really shocked and disappointed and I knew it was most likely a direct side-effect of the Thalidomide. I had been taken off my maintenance dose of Thalidomide as I was starting to lose feeling in my fingers and toes – something called peripheral neuropathy. I should not have been taken off the daily blood thinner I was on and obviously it was the build up of Thalidomide in my system that caused it. This was never confirmed to me as the scenario and I am not blaming anyone – it was just something that fell between stools.
It was another blip on the road to recovery.
At least we had the diagnosis and the treatment plan.
Unfortunately the kids weren’t allowed into see me because of concerns about swine flu and then the possible side effects to children from my being slightly nuclear after the specialist dye and scan. I felt really awful – here we go again I thought – me and my bloody illness destroying family plans and messing up the kids’ holidays. It was at times like this that I really hated being a mom who was always ill! It was hard not to feel like a burden – even though I know that’s not what they thought…… that’s what I felt like at times.
I was allowed out on day release from the hospital after the risk from swine flu and the nuclear medicine had gone and we had a lovely time at a family fun day and at the beach.
I spent just over a week in hospital and I was put on new treatment of daily injections to thin my blood. Unfortunately this would mean a new series of hospital visits for me to the Warfarin Clinic which was frustrating as I was just getting used to being a little bit more free of hospital visits.
I was discharged on daily injections which I decided I was going to manage myself, if only to give us the freedom to go and do something by way of a family break. The nurse showed me how to do the injection into my stomach – I had to alternate and go for a different side each day so as to minimize the bruising. It wasn’t the most pleasant thing to have to do as these were full needles and not the automatic ones I had used back in 2007. But you do what you have to do for the sake of freedom.
We were able to get away for a few days as a family and we had a lovely relaxing time together. We were just happy to be together again before work and school life kicked in.
It was only after all the active treatment had finished that I began to realise how lucky I was to have made it though something as serious as a pulmonary embolism. I was starting to feel like a cat with nine lives and I was afraid to start counting just how many of those lives I had already used up.