The Pacemaker Infection Saga
It all started on the 28th of september when I went to Tallaght hospital to have my pacemaker checked. I wanted it checked because I had been feeling a bit less than 100% over the summer and during my holiday in France and Andorra. I reckoned it was just that I was tired from doing too much and that it had nothing to do with my pacemaker but I wanted it checked. So off I went expecting nothing but when the technician checked the pacemaker she called another guy in to check something. They decided that something might be wrong as my pacemaker had changed modes. They sent me for a chest x-ray and when I got back they said they could see a fracture on the outer wire in two places. So the pacemaker was working but not working as well as it should have. They contacted the doctors and it was decided that they would change the wires and probably the pacemaker box as well. In the meantime I was told to take it easy. I decided since I was fine for a whole summer with this state of affairs I’d go do one last easy cave. It was a good idea as I wouldn’t be doing anything outdoorsy for a while.
On the 10th of october I went out to Tallaght hospital and was up in the day ward by 7.30 in the morning. I went for the operation at about lunchtime. Dr. M performed the operation, he originally put in the pacemaker three years ago. He took out the pacemaker box and tried to take out the wire that was fractured. The wire didn’t want to come out so he left most of it in, lots of people have spare wires left in as it’s easier to leave them there and they usually don’t cause any problems. He inserted two small wires as he hoped these wouldn’t fracture. The operation lasted a while as it took a while to take out the old stuff and then insert the new pacemaker box and wires. I was awake through it but actually started drifting off to sleep due to the drugs they gave me to relax. By the time he was sewing back up the wound I could feel it as the local anathestic was wearing off. It was sore but the drugs ensured I didn’t care so much. After this I went back to the recovery room where they gave me an echo to check everything was ok. I went back home and slept. It was pretty sore but I started to recover and went back home to Mam and Dad.
Two weeks later during the week of the 22nd of october I started feeling short of breath when I was walking. I had been out doing short walks and when I was coming up hills I had to stop lots of times to catch my breath. I was due to go away for the bank holiday weekend and hoped that I would be able to. I rang Tallaght hospital and the doctor told me to go to the nearest hospital to get checked out. So instead of going away for the weekend I ended up in A&E on the 26th of october. They did some blood tests and the results showed that I might have a clot. They were afraid I might have a clot in my lung after the operation. I would have to stay in for more tests. My aunt came in with her snuggly dressing gown, pj’s and slippers for me. The snuggly dressing gown was to become my friend. The next day I had a CT scan which showed I had no clots but there was an infection there. I was put on antibiotics and sent home on the 30th of october. With the antibiotics I got a rash on my hands and feet so they thought I was allergic to penicillin.
When I went home I had a stomach bug and my temperature went up on the 1st of november, it was really high and I was very sick so on the friday morning I headed back to the hospital. I was put on some more antibiotics IV ones this time. On the monday I was seen by a cardiologist from Dr. McN's team. Dr. N was very nice and asked me loads of questions. Again that phrase you’re so young to have a pacemaker. I was sent for an echo and an ultrasound on the tuesday. Then on wednesday I met Dr. McN who was lovely. He said the echo threw up a few questions as my heart’s pericardium was inflamed. He wanted to do a trans osephegal echo to get a better look at my heart.
This was done on the thursday so I had a day to wait. In hospital I got used to waiting, waiting for doctors, waiting for nurses, for tablets, for tests for everything really. I am a patient enough person so that helped. On thursday I went for the trans osephegal echo or TOE. This involves them putting a tube down the throat so that they can do an echo of the heart without the lungs getting in the way. Luckily they give you relaxing drugs so that you don’t notice. They also numb the mouth and throat with a spray that tastes of rotting bananas. Nice. After the TOE the doctor said he’d tell me the results when I woke up a bit from the drugs. He came back later and told me the news that I had vegetation on one of my pacemaker leads in the right atrium of my heart. Vegetation is the word they use for some kind of bacterial growth. So in other words I had an infection on one of my pacemaker wires, they couldn’t tell if it was the old or new wire. Endocarditis is the official name. It was the reason I’d been unwell because the infection could get into my blood as it passed through the heart. They decided to take blood to culture up to see if any microbes would grow so that they could find out what the infection was. Once they knew what bacteria it was then they could choose the right antibiotic to fight the infection with.
For me this meant getting blood taken twice a day and also when my temperature rose above 38 degrees. The needle count was slowly rising. On the friday I had my pacemaker checked. She checked something and it felt like I was being punched in the side. Apparently there is a condition where the pacemaker stimulates a nerve which makes the diaphram jump. Thankfully she fixed it so it didn’t happen again. Over the weekend I waited some more. I read a lot of books and Dave bought me a DS Lite so I could play some games. On monday I started antibiotics three of them vancomycin, gentamycin both of which were IV and rifampicin which was a red tablet. The first time I got vancomycin I got red man syndrome because it was put through the drip too quickly. It felt like I was being stung and my face turned all red. After that it was put on slowly so it took and hour and a half to go in. I had these antibiotics twice a day. They made me pretty sleepy.
On tuesday the 13th of november I was moved to St. James’s hospital in Dublin by ambulance to the Keith Shaw cardiac surgery ward. I was to have the pacemaker and the wires removed in an operation the next day. I fasted all that day and even changed into the gown but then I was told that the operation was cancelled because there was an emergency. More waiting but it was ok as I made a friend, a girl who was just about my age who was getting a defibrillator removed. On friday the 16th I went for the operation. Before the operation I wanted to ask some questions so I had to wait for the surgeon. The anethestist decided he’d get started anyway and so I had an aertial line put in while awake, it hurt. I met the surgeon asked my questions and then told them to bring it on.
I woke up later on in the recovery room attached to a million machines and oxygen. I hurt but they gave me morphine and it was nice and floaty after that. I was moved to the high dependency unit where Dave was waiting. Later on my Mum, Dad and aunt Helen came in too. The operation was a success they removed the pacemaker and wires except for two tiny bits of wire which they couldn’t remove. They used a laser to try get them out but to no avail. The nurses in the Keith Shaw unit were lovely throughout my stay. Where they get all these nice people from I don’t know. When I was better I moved to another room. I was on a heart monitor all the time just in case my heart did anything strange. And it did but not what they were expecting, instead of going too slowly my heart started going too quickly. I’d walk around my room and suddenly a doctor or nurse would come in asking if I was ok. My heartrate was up around 150bpm. So it was as if I was running around all day.
After my spell in Keith Shaw I was moved to the Robert Adams ward which is a cardiac ward and I was under another cardiologist. On the 23rd of november I had another TOE. This was unpleasant but even more unpleasant was the news that they could see vegetation on the bit of wire that was left. I had hoped it would all be gone so there would be nothing for the infection to live on. On the 27th of november I had a PICC line inserted. This is a special type of cannula that can be left in for a few weeks. Also it’s a long line so the antibiotics go straight into one of the big veins near the heart. It was put in under xrays so the doctor could see where it was going. I had local anathestic in my arm so it didn’t hurt much. Although they didn’t give me any sedation so I knew all about what they were doing. I had a good chat with the doctor about what was wrong with the health service in Ireland though. The femoral central line on my leg was removed as well so that was nice as it hurt a bit. My doctor was a bit mystified as to why my heart was now acting normally, there was no trace of the bradycardia or heartblock. He even insisted on seeing the original data to see why they put in a pacemaker. He said I definitely needed a pacemaker and that it was bizarre that I didn’t need it at that time.
On the 29th of november I was moved by ambulance back down to waterford regional hospital. That weekend I was allowed home between the antibiotic courses. They hoped that I’d be feeling well enough to go home a few days during the week between my antibiotics. My Mum was off work so she’d be able to collect me and bring me home. They hoped that just before christmas I’d be finished the course and could go home all better. Hmm… plans eh? That was the plan what happened was slightly different.
I was good for the first week back in Waterford and was even allowed go home for a time the first weekend. This was good if a bit strange, after being in hospital for ages it’s strange to be home. On the sunday 2nd of december I started to feel a bit sick and headed back to the hospital early. That evening my temperature was a bit high. And then it was high on monday and then on tuesday my temperature went up to 40 degrees which is very high. One of my antibiotics was stopped and the dose of the other two increased. On the wednesday I started feeling awful. I was feeling chills then getting shakes then getting a very high temperature. My skin also started coming out in a rash.
On the friday they tried putting me on vancomycin administered by drip and it felt like a swarm of bees were stinging me. It was awful. At this stage the microbiology team in the hospital got involved. They decided to stop that antobiotic and put me on a new one called Linezolid. I think they started this one on the saturday. I’m not sure though as these days are very blurred in my mind as they passed in a whirl of me feeling awful all the time. I couldn’t eat at this stage and had to fight off well meaning catering staff who kept asking if I wanted food. I started to feel worse over that weekend and by monday I was vomiting when they gave me the antibiotic and I was covered in an angry red rash. On the tuesday I had probably the worst of my days in hospital so far. I was vomiting all the time and had a temperature of about 41 degrees at one point. I was covered in a horrible rash that was now itchy. At this point I was also given some other antibiotic which I don’t know the name of. I think they were afraid my infection had come back or that I’d developed some secondary infection. That night I was moved to the Cardiac Care Unit because I was too sick to be on a normal ward.
The wednesday passed in a blur, I was so sick I spotted the nurse who was looking after me crying about the state of me. I was given IV fluid as I couldn’t keep water down. I also got IV paracetamol which is amazing stuff. It kept my temperature down to about 38 degrees which at this stage wasn’t so bad. I had developed diaherroa as well. I was also being given various anti nausea injections some of which made me sicker but eventually they found one that worked. It spaced me out a bit which was a good thing. I was covered in camomile lotion too as this was helping a little to stop my skin itching.
On the thursday it was decided that I would be moved back to the Keith Shaw ward in Dublin so they could treat me there. They did not know exactly what was wrong with me and if I required surgery at least there I would be in the right place. I was doped up on lots of drugs and put in an emergency ambulance with my own nurse and rushed to Dublin. I remember looking out the window to see the ambulance passing traffic at full speed on the wrong side of the road. I decided after this to go asleep. It took only two hours for me to get to the bed in a ward in Dublin. My poor Mum and Dad came up in the car and they came to visit me and looked so worried. It was awful.
That night a lovely nurse called Susan looked after me. She had seen me before and barely recognised me as at this stage I had an all over rash and my head had swelled up. My throat swelled up too which was unpleasant as it made it hard to breathe. My eyes had also nearly closed so I couldn’t see. Susan was funny cos she blocked the mirror when I was in the bathroom saying you don’t need to see yourself.
On the friday I was given various scans and tests. I was banned from drinking as I was having a CT scan. When I went for the scan they gave me a drink of dye water which tasted horrible but I was so thirsty at that stage I just drank it down. I remember being really cold while I waited for the CT scan. At that point I was about as miserable as it’s possible to be. That day I had another TOE scan, they moved me into my own room for this which was nice of them. I stayed in that room which was good. The doctor who gave me the scan was christened Dr God by my Mum because all the nurses loved him. They all went on about how nice he was and well he was very nice. He gave me loads of sedation so that I’d sleep for a good while. All these tests showed no secondary infection or worsening of the one I had. This was good as if there was I would need open heart surgery to have the bits of pacemaker wire removed. The doctor said he hoped not to have to do the surgery as the risk of infection would be too great and I wasn’t really strong enough for the operation.
Sometime in all this the professor of microbiology came to look at me. He decided I was having a very severe reaction to the antibiotics. They decided to take me off all the medicine and see what happened. Also on that day aka the worst day ever myself and Dave decided that when all this unpleasantness was over we’d get married. Here I was looking the worst I’ve looked and feeling awful and very very ill and he loved me so much. I love him so much and he was so brilliant through it all. It’s very hard to be the person who has to look at the sick person. So now I had something good to look forward to.
Once off the antibiotics I slowly started to improve. My temperature went down so now I was cold all the time while I readjusted to not having a fever. My skin was itchy and the doctor informed me it would all peel off, great. I slowly started to have bits of food, things like ice cream and easy to eat stuff. I had lost a good bit of weight and all my muscles which made me weak. My face went back to normal and Susan finally let me have a look in a mirror.
It was now the week before christmas and my poor family were gearing up for christmas with me in hospital and they were also tearing around the country following me to various hospitals. They were all great, my Mum is a complete legend as far as I’m concerned. My Dad and brothers and my aunts were all great. I got cards from lots of people and had these beside my bed. It’s nice when people are wishing you better.
I was sent back to Waterford on the wednesday before christmas and on the thursday after being seen by the doctor I was sent home with instructions to take it easy, come back if I got a fever and to eat lots and lots. It was so nice to be home. Sleeping in a real bed, eating nice food, not having someone waking you up for blood tests at 7.30, luxury! My skin did all fall off and when I tried to run I almost fell over because the muscles for running were gone. But this was minor compared with being home for christmas.
I wrote that four years ago quite soon after all that happened so I wouldn't forget it. I did get home for Christmas and it was lovely. In April I had a new pacemaker inserted with no problems this time. Dave and I got married in June that year. I slowly improved but still had problems with shortness of breath. I also got pneumonia twice. I went back to the doctors about the shortness of breath and another problem where I became very red faced after exercise and eating. I was dismissed and eventually went for a second opinion. I eventually had a CT scan and was then sent for a angiogram and yet another trans osephegal echo. These showed a massive clot in my left lung which means there is no blood supply to most of my left lung. So essentially it doesn't work as the blood can't get in to the lung to be oxygenated. This explains why I get so out of breath. Also the vein going up to my brain has a slight narrowing so that explains the red face, I have hypoxia, a lack of oxygen to the brain. They didn't know at the time that I had the clot but the clot was probably a piece of infection that broke off from my heart. The doctor was surprised it wasn't noticed as it would have made me quite sick. I was lucky basically as most people don't survive clots that big.
Really I'm lucky as any one of the things I had could have killed me but I survived. Every day I remember that. It's also hard to think that I probably had more chance of winning the lotto than developing all the complications that I did. I could star in an episode of House. Most people have never even heard of endocarditis and most doctors have no experience of my lung condition and seem baffled by my multiple antibiotic allergies. So sympathy and understanding have sometimes been thin on the ground. I look young and healthy so I'm obviously just moaning when I pause going up stairs. I used to do so many outdoor sports and I'd love to go back to them but I don't think I can. Running out of puff in the middle of a cave is serious and I don't want to put others at risk while they try to help me. A small goal for next year is to hill walk again. That all sounds a bit negative but one positive thing is that a brush with your own mortality shows you what is important in life. For me it was to realise that family is so important and I realised I wanted my own family. So now four years later I'm writing this with my three month old daughter asleep beside me. She has brought me so much joy in such a short time and for that I am so thankful and look forward to every day of the future with her.
On the 10th of october I went out to Tallaght hospital and was up in the day ward by 7.30 in the morning. I went for the operation at about lunchtime. Dr. M performed the operation, he originally put in the pacemaker three years ago. He took out the pacemaker box and tried to take out the wire that was fractured. The wire didn’t want to come out so he left most of it in, lots of people have spare wires left in as it’s easier to leave them there and they usually don’t cause any problems. He inserted two small wires as he hoped these wouldn’t fracture. The operation lasted a while as it took a while to take out the old stuff and then insert the new pacemaker box and wires. I was awake through it but actually started drifting off to sleep due to the drugs they gave me to relax. By the time he was sewing back up the wound I could feel it as the local anathestic was wearing off. It was sore but the drugs ensured I didn’t care so much. After this I went back to the recovery room where they gave me an echo to check everything was ok. I went back home and slept. It was pretty sore but I started to recover and went back home to Mam and Dad.
Two weeks later during the week of the 22nd of october I started feeling short of breath when I was walking. I had been out doing short walks and when I was coming up hills I had to stop lots of times to catch my breath. I was due to go away for the bank holiday weekend and hoped that I would be able to. I rang Tallaght hospital and the doctor told me to go to the nearest hospital to get checked out. So instead of going away for the weekend I ended up in A&E on the 26th of october. They did some blood tests and the results showed that I might have a clot. They were afraid I might have a clot in my lung after the operation. I would have to stay in for more tests. My aunt came in with her snuggly dressing gown, pj’s and slippers for me. The snuggly dressing gown was to become my friend. The next day I had a CT scan which showed I had no clots but there was an infection there. I was put on antibiotics and sent home on the 30th of october. With the antibiotics I got a rash on my hands and feet so they thought I was allergic to penicillin.
When I went home I had a stomach bug and my temperature went up on the 1st of november, it was really high and I was very sick so on the friday morning I headed back to the hospital. I was put on some more antibiotics IV ones this time. On the monday I was seen by a cardiologist from Dr. McN's team. Dr. N was very nice and asked me loads of questions. Again that phrase you’re so young to have a pacemaker. I was sent for an echo and an ultrasound on the tuesday. Then on wednesday I met Dr. McN who was lovely. He said the echo threw up a few questions as my heart’s pericardium was inflamed. He wanted to do a trans osephegal echo to get a better look at my heart.
This was done on the thursday so I had a day to wait. In hospital I got used to waiting, waiting for doctors, waiting for nurses, for tablets, for tests for everything really. I am a patient enough person so that helped. On thursday I went for the trans osephegal echo or TOE. This involves them putting a tube down the throat so that they can do an echo of the heart without the lungs getting in the way. Luckily they give you relaxing drugs so that you don’t notice. They also numb the mouth and throat with a spray that tastes of rotting bananas. Nice. After the TOE the doctor said he’d tell me the results when I woke up a bit from the drugs. He came back later and told me the news that I had vegetation on one of my pacemaker leads in the right atrium of my heart. Vegetation is the word they use for some kind of bacterial growth. So in other words I had an infection on one of my pacemaker wires, they couldn’t tell if it was the old or new wire. Endocarditis is the official name. It was the reason I’d been unwell because the infection could get into my blood as it passed through the heart. They decided to take blood to culture up to see if any microbes would grow so that they could find out what the infection was. Once they knew what bacteria it was then they could choose the right antibiotic to fight the infection with.
For me this meant getting blood taken twice a day and also when my temperature rose above 38 degrees. The needle count was slowly rising. On the friday I had my pacemaker checked. She checked something and it felt like I was being punched in the side. Apparently there is a condition where the pacemaker stimulates a nerve which makes the diaphram jump. Thankfully she fixed it so it didn’t happen again. Over the weekend I waited some more. I read a lot of books and Dave bought me a DS Lite so I could play some games. On monday I started antibiotics three of them vancomycin, gentamycin both of which were IV and rifampicin which was a red tablet. The first time I got vancomycin I got red man syndrome because it was put through the drip too quickly. It felt like I was being stung and my face turned all red. After that it was put on slowly so it took and hour and a half to go in. I had these antibiotics twice a day. They made me pretty sleepy.
On tuesday the 13th of november I was moved to St. James’s hospital in Dublin by ambulance to the Keith Shaw cardiac surgery ward. I was to have the pacemaker and the wires removed in an operation the next day. I fasted all that day and even changed into the gown but then I was told that the operation was cancelled because there was an emergency. More waiting but it was ok as I made a friend, a girl who was just about my age who was getting a defibrillator removed. On friday the 16th I went for the operation. Before the operation I wanted to ask some questions so I had to wait for the surgeon. The anethestist decided he’d get started anyway and so I had an aertial line put in while awake, it hurt. I met the surgeon asked my questions and then told them to bring it on.
I woke up later on in the recovery room attached to a million machines and oxygen. I hurt but they gave me morphine and it was nice and floaty after that. I was moved to the high dependency unit where Dave was waiting. Later on my Mum, Dad and aunt Helen came in too. The operation was a success they removed the pacemaker and wires except for two tiny bits of wire which they couldn’t remove. They used a laser to try get them out but to no avail. The nurses in the Keith Shaw unit were lovely throughout my stay. Where they get all these nice people from I don’t know. When I was better I moved to another room. I was on a heart monitor all the time just in case my heart did anything strange. And it did but not what they were expecting, instead of going too slowly my heart started going too quickly. I’d walk around my room and suddenly a doctor or nurse would come in asking if I was ok. My heartrate was up around 150bpm. So it was as if I was running around all day.
After my spell in Keith Shaw I was moved to the Robert Adams ward which is a cardiac ward and I was under another cardiologist. On the 23rd of november I had another TOE. This was unpleasant but even more unpleasant was the news that they could see vegetation on the bit of wire that was left. I had hoped it would all be gone so there would be nothing for the infection to live on. On the 27th of november I had a PICC line inserted. This is a special type of cannula that can be left in for a few weeks. Also it’s a long line so the antibiotics go straight into one of the big veins near the heart. It was put in under xrays so the doctor could see where it was going. I had local anathestic in my arm so it didn’t hurt much. Although they didn’t give me any sedation so I knew all about what they were doing. I had a good chat with the doctor about what was wrong with the health service in Ireland though. The femoral central line on my leg was removed as well so that was nice as it hurt a bit. My doctor was a bit mystified as to why my heart was now acting normally, there was no trace of the bradycardia or heartblock. He even insisted on seeing the original data to see why they put in a pacemaker. He said I definitely needed a pacemaker and that it was bizarre that I didn’t need it at that time.
On the 29th of november I was moved by ambulance back down to waterford regional hospital. That weekend I was allowed home between the antibiotic courses. They hoped that I’d be feeling well enough to go home a few days during the week between my antibiotics. My Mum was off work so she’d be able to collect me and bring me home. They hoped that just before christmas I’d be finished the course and could go home all better. Hmm… plans eh? That was the plan what happened was slightly different.
I was good for the first week back in Waterford and was even allowed go home for a time the first weekend. This was good if a bit strange, after being in hospital for ages it’s strange to be home. On the sunday 2nd of december I started to feel a bit sick and headed back to the hospital early. That evening my temperature was a bit high. And then it was high on monday and then on tuesday my temperature went up to 40 degrees which is very high. One of my antibiotics was stopped and the dose of the other two increased. On the wednesday I started feeling awful. I was feeling chills then getting shakes then getting a very high temperature. My skin also started coming out in a rash.
On the friday they tried putting me on vancomycin administered by drip and it felt like a swarm of bees were stinging me. It was awful. At this stage the microbiology team in the hospital got involved. They decided to stop that antobiotic and put me on a new one called Linezolid. I think they started this one on the saturday. I’m not sure though as these days are very blurred in my mind as they passed in a whirl of me feeling awful all the time. I couldn’t eat at this stage and had to fight off well meaning catering staff who kept asking if I wanted food. I started to feel worse over that weekend and by monday I was vomiting when they gave me the antibiotic and I was covered in an angry red rash. On the tuesday I had probably the worst of my days in hospital so far. I was vomiting all the time and had a temperature of about 41 degrees at one point. I was covered in a horrible rash that was now itchy. At this point I was also given some other antibiotic which I don’t know the name of. I think they were afraid my infection had come back or that I’d developed some secondary infection. That night I was moved to the Cardiac Care Unit because I was too sick to be on a normal ward.
The wednesday passed in a blur, I was so sick I spotted the nurse who was looking after me crying about the state of me. I was given IV fluid as I couldn’t keep water down. I also got IV paracetamol which is amazing stuff. It kept my temperature down to about 38 degrees which at this stage wasn’t so bad. I had developed diaherroa as well. I was also being given various anti nausea injections some of which made me sicker but eventually they found one that worked. It spaced me out a bit which was a good thing. I was covered in camomile lotion too as this was helping a little to stop my skin itching.
On the thursday it was decided that I would be moved back to the Keith Shaw ward in Dublin so they could treat me there. They did not know exactly what was wrong with me and if I required surgery at least there I would be in the right place. I was doped up on lots of drugs and put in an emergency ambulance with my own nurse and rushed to Dublin. I remember looking out the window to see the ambulance passing traffic at full speed on the wrong side of the road. I decided after this to go asleep. It took only two hours for me to get to the bed in a ward in Dublin. My poor Mum and Dad came up in the car and they came to visit me and looked so worried. It was awful.
That night a lovely nurse called Susan looked after me. She had seen me before and barely recognised me as at this stage I had an all over rash and my head had swelled up. My throat swelled up too which was unpleasant as it made it hard to breathe. My eyes had also nearly closed so I couldn’t see. Susan was funny cos she blocked the mirror when I was in the bathroom saying you don’t need to see yourself.
On the friday I was given various scans and tests. I was banned from drinking as I was having a CT scan. When I went for the scan they gave me a drink of dye water which tasted horrible but I was so thirsty at that stage I just drank it down. I remember being really cold while I waited for the CT scan. At that point I was about as miserable as it’s possible to be. That day I had another TOE scan, they moved me into my own room for this which was nice of them. I stayed in that room which was good. The doctor who gave me the scan was christened Dr God by my Mum because all the nurses loved him. They all went on about how nice he was and well he was very nice. He gave me loads of sedation so that I’d sleep for a good while. All these tests showed no secondary infection or worsening of the one I had. This was good as if there was I would need open heart surgery to have the bits of pacemaker wire removed. The doctor said he hoped not to have to do the surgery as the risk of infection would be too great and I wasn’t really strong enough for the operation.
Sometime in all this the professor of microbiology came to look at me. He decided I was having a very severe reaction to the antibiotics. They decided to take me off all the medicine and see what happened. Also on that day aka the worst day ever myself and Dave decided that when all this unpleasantness was over we’d get married. Here I was looking the worst I’ve looked and feeling awful and very very ill and he loved me so much. I love him so much and he was so brilliant through it all. It’s very hard to be the person who has to look at the sick person. So now I had something good to look forward to.
Once off the antibiotics I slowly started to improve. My temperature went down so now I was cold all the time while I readjusted to not having a fever. My skin was itchy and the doctor informed me it would all peel off, great. I slowly started to have bits of food, things like ice cream and easy to eat stuff. I had lost a good bit of weight and all my muscles which made me weak. My face went back to normal and Susan finally let me have a look in a mirror.
It was now the week before christmas and my poor family were gearing up for christmas with me in hospital and they were also tearing around the country following me to various hospitals. They were all great, my Mum is a complete legend as far as I’m concerned. My Dad and brothers and my aunts were all great. I got cards from lots of people and had these beside my bed. It’s nice when people are wishing you better.
I was sent back to Waterford on the wednesday before christmas and on the thursday after being seen by the doctor I was sent home with instructions to take it easy, come back if I got a fever and to eat lots and lots. It was so nice to be home. Sleeping in a real bed, eating nice food, not having someone waking you up for blood tests at 7.30, luxury! My skin did all fall off and when I tried to run I almost fell over because the muscles for running were gone. But this was minor compared with being home for christmas.
I wrote that four years ago quite soon after all that happened so I wouldn't forget it. I did get home for Christmas and it was lovely. In April I had a new pacemaker inserted with no problems this time. Dave and I got married in June that year. I slowly improved but still had problems with shortness of breath. I also got pneumonia twice. I went back to the doctors about the shortness of breath and another problem where I became very red faced after exercise and eating. I was dismissed and eventually went for a second opinion. I eventually had a CT scan and was then sent for a angiogram and yet another trans osephegal echo. These showed a massive clot in my left lung which means there is no blood supply to most of my left lung. So essentially it doesn't work as the blood can't get in to the lung to be oxygenated. This explains why I get so out of breath. Also the vein going up to my brain has a slight narrowing so that explains the red face, I have hypoxia, a lack of oxygen to the brain. They didn't know at the time that I had the clot but the clot was probably a piece of infection that broke off from my heart. The doctor was surprised it wasn't noticed as it would have made me quite sick. I was lucky basically as most people don't survive clots that big.
Really I'm lucky as any one of the things I had could have killed me but I survived. Every day I remember that. It's also hard to think that I probably had more chance of winning the lotto than developing all the complications that I did. I could star in an episode of House. Most people have never even heard of endocarditis and most doctors have no experience of my lung condition and seem baffled by my multiple antibiotic allergies. So sympathy and understanding have sometimes been thin on the ground. I look young and healthy so I'm obviously just moaning when I pause going up stairs. I used to do so many outdoor sports and I'd love to go back to them but I don't think I can. Running out of puff in the middle of a cave is serious and I don't want to put others at risk while they try to help me. A small goal for next year is to hill walk again. That all sounds a bit negative but one positive thing is that a brush with your own mortality shows you what is important in life. For me it was to realise that family is so important and I realised I wanted my own family. So now four years later I'm writing this with my three month old daughter asleep beside me. She has brought me so much joy in such a short time and for that I am so thankful and look forward to every day of the future with her.