Further Complication

Everything seemed to be looking up from this point and I was making progress every day. I would take myself on walks up and down the corridor several times a day and then spend some of the day sitting in the day room to get away from the ward. I even felt strong enough to walk from the ward to the Costa at the entrance of the hospital, the nursing staff and my consultant were extremely impressed that I was making such an effort to keep moving and building myself up.

On the morning of the 24^th January I felt that something wasn't quite right. When I was breathing to the bottom of my lungs I was getting an odd twinge. The feeling was very much like when you have precordial catch syndrome, that feeling in your chest like an air bubble causing you to breathe shallower and shallower until it feels as though the bubble has popped. I tried to put it to the back of my mind, expecting that in a few minutes, maybe an hour, the feeling would have passed. When an hour passed me by and the pain was still there I told a nurse and explained my worry that it could be something sinister, he asked me to wait another half an hour and if it was still there he would bleep Mr Miller. The pain hadn't gone away by this point and Mr Miller was called to the ward. He explained that the most overriding worry when a patient presents with chest pain, particularly after a major operation and period of immobility, is whether they have developed a pulmonary embolism. He immediately ordered a CT scan to be done as a matter of urgency and I was given a treatment level dose of Fragmin, the idea being that if it conspired that I had indeed developed a pulmonary embolism, the treatment was already under way. Mr Miller explained that he was doubtful that the scan would come back positive for pulmonary embolism as every effort possible was made to reduce the risk to me during my hospital stay. From day one I was on the preventative level of Fragmin, as is standard for any patient with an increased risk factors for DVT. I wore compression stockings from the moment I was admitted to the hospital, even though they pinched, twisted and generally looked unsightly. Other people would cast them aside after a few days of discomfort to the displeasure of the nurses but I persevered and only ever removed them when I needed to be bathed. Whilst I was unconscious and up until I had a good level of mobility I had Flowtrons attached twenty four hours a day, strange boots strapped to your legs and feet which massage and keep circulation going. My mum reliably informed me that she would go to great lengths whilst I was unconscious to move my limbs around and massage them. As soon as I was physically able to, I was walking around, pushing myself to go as far as I could for as long as I could, all in an effort to reduce the risk of DVT and pulmonary embolism. Quite simply, there was nothing more that could have been done either by me or by the medical staff to reduce my risk, so we believed our chances of me having developed a pulmonary embolism to be quite remote.

All of this bustle and commotion was happening right in the middle of visiting time, so I had my mum and sister with me as it was unfolding. A cannula was hurriedly situated so the contrast dye could be administered during the CT scan and then moments later a porter arrived to wheel me down to CT on a bed. I was very, very scared. Everything was moving in fast forward, whirling around me and I couldn't absorb quite what was going on, I just closed my eyes and cried through closed lids during the scan.

Back on the ward we were waiting anxiously for the results. The radiographer had informed us the results would be sent upstairs straight away so we didn't expect to have to wait too long. It was past visiting time by now but because of what had conspired, the nursing staff were kind enough to let my visitors remain with me and I think they knew that without them I would have crumbled. Half an hour passed and still no one had come to us, we were stuck in limbo, not knowing what was happening. My mum decided to go and find someone to give us some information, she found Mr Miller's junior who had put my cannula in earlier and brought him back to my bed. He closed the curtains around the bed and while his face read 'it's not good news' I had to cling onto the hope that everything was fine.

“It's just a pulled muscle, isn't it?” I smiled at him. The poor man looked completely distraught, he hunkered down so he could look me straight at eye level, he clasped my hand in his and twitched his mouth into a pitying half-smile. “It's not a pulmonary embolism, is it?” I questioned, my voice was cracking and I was pleading him with my eyes to tell me it wasn't. He looked down momentarily and then returned eye contact with me and simply confirmed quietly that it was, it was indeed a pulmonary embolism. I shook my head in disbelief, told him he must be mistaken, there was no way it could possibly be. He clasped my hand tighter and gently tried to get it through to me that the worst had happened. I completely broke down. A pulmonary embolism? People succumb to pulmonary embolisms. They kill people stone dead in their tracks and without warning, that was my knowledge of pulmonary embolism. I became completely inconsolable, screaming and crying that I was going to die. My mum was sobbing deeply beside me, clutching at me, trying to stop me shattering into a million tiny pieces. Her own father had died from a pulmonary embolism, it was common knowledge to me and as such it was something I was always aware and wary of. Now I had one and it was too much to digest.

My sister fled the room, distraught and ended up running straight into my husband in the corridor who had arrived for the evening visit. She had started to explain what had happened but was so confused and overcome that she could only say that I was dying. Moments later he rushed in from behind the curtains, his face void of colour. The kind junior doctor calmly explained again what had happened, for Mark's benefit. I still could not come to terms with it all, I could picture this disgusting clot sitting in my lung, I just wanted to reach into my chest and yank it out. To sit there and know that the horrible thing was sitting right there, had gone through my heart and then lodged in my lung was awful. I just wanted someone to take it out but they couldn't.

Mr Miller came to see us a little later and was very disappointed at the outcome. He kept saying that although there was always a chance, he never envisaged that the scan would have shown a PE. He reminded me that the treatment had already commenced and that I would need to stay on this high dose Fragmin until the clot was gone. I asked whether I was going to die and what would happen if it came loose and went through my heart and he explained that the clot had already travelled through my heart and had nestled into my right lung. It felt strange to me that after being told of such a serious medical complication, literally nothing changed. A small adjustment to the medicine I was already taking and nothing more. That was all they could do.

Once I was left alone I started dissecting the last few days in my mind. I realised that when I had been getting up off the bed, particularly at night, I had been experiencing breathlessness. When I stood up it was as though someone had deactivated my lungs and I wouldn't be able to breathe in or out momentarily. I had just put it down to exhaustion and the illness but maybe if I had said something, the doctors could have found the PE earlier. Despite the fact that most PE's occur as a result of a DVT, I never had any swelling or pain in my legs. If I had experienced anything I would have alerted a member of the nursing staff immediately. It was just a freak occurrence.

Over the next few days, the symptoms of the PE became worse. I had been warned that things were likely to get worse before they started improving on the blood thinning treatment. Breathing became extremely painful and shallow. Sitting at any kind of an angle that wasn't bolt upright caused my breath to leave me entirely and lying down was impossible. It was terrifying to struggle for breath and I felt so helpless. I was given oxygen to keep my saturation in a good range, it felt as though I had taken ten steps back in my recovery and I was right back to the beginning.

During this time I became extremely depressed. I was still questioning myself day and night about the ischemic bowel, my head was a complete mess. Why me? Why me? Why me? And then along comes another medical drama to set me off again. I genuinely felt as though life was not worth living any more I would look around the ward, full of lazy people who were bedridden by their own choice. People who, despite pleas from physiotherapists, doctors and nurses, would refuse to get up and move around. I looked at them and wondered why the hell they didn't get a PE. They made no effort whereas I made every effort and yet it was still me who got the raw deal. I looked at other people getting better, having only been in for a routine small procedure and hated them. I saw my visitors come and go and could barely look at them because I resented their freedom, they could walk in and out of here at will and I was stuck where I was. I ended up pushing everyone away, not wanting to get close to anyone because I was so full of hatred and anger. Evening visits became a nightmare for my family. Someone would visit me every single day, twice a day and they would be met with someone who made conversation as difficult as possible until it petered out altogether. I felt like it had been a waste of time having Mr Miller save me, only to have my life become the circus that it was at that point.

I'd developed a fever and my heart rate was continually too rapid, some swabs were taken from my central line and it was discovered that there was an infection in the line. It had been in for almost three weeks so was coming to the end of it's life anyway but it was decided that it would be removed. I was very apprehensive about having the central line removed as I knew it was a long cannula and I feared that it would be painful. I was also concerned that as it was in my jugular vein and I was on high dose blood thinners I would end up bleeding out but I need not have worried. Mr Miller came to me and removed it himself, it was completely painless and all I needed to do was lie still for fifteen minutes until they were sure I wasn't bleeding.

As I was still receiving parenteral nutrition because I was unable to keep any food down, the doctors needed to come to a decision on how to give me nutrition now that the central line was out. The initial idea was to simply fit another central line, this time in my chest. By this point, I felt as though I had been messed around with enough. I had been poked and prodded near constantly for weeks and the very thought of having another needle put into me was too much. I guess you might think I was rather stupid to decline the central line. I guess you may be wondering what on earth gives me the right to go against what medical professionals are advising, but I could not have gone through another invasive procedure. Luckily I was unconscious in ICU when they fitted my central line, this time I would be fully aware of what was happening. It was going to be one of the registrars who would fit the central line and this same registrar had been unsuccessful in finding a vein anywhere on my body that they were able to take a simple blood test from in the past so I did not have an awful lot of confidence in her ability to find one to put the central line in. After realising I was not going to submit to having another central line fitted they offered to fit a nasogastric tube. Again, I declined. I'm sure I came across as a very difficult customer but the truth was that I had been perfectly obliging throughout my entire hospital stay. I had never declined anything and had been a very good patient but I had reached a point where I needed to preserve myself. I did not want to go through anything more than I had already been through. I didn't want to be interfered with any more, I wanted to be me again and be in charge of myself. The registrars looked very disappointed that they were being turned away and were going to have to ask Mr Miller how to proceed.

Later in the afternoon Mr Miller came to see me. I was a bit wary that I might be getting a telling off for being so difficult but I couldn't have been more wrong. He seemed to fully understand that I had reached my limit. He proposed another alternative. I still had a jejunostomy tube, basically a Foley catheter going into my small bowel. It was possible to use the jejunostomy tube with a feeding pump, the same as if I had a nasogastric tube. It meant that I didn't have to go through anything else, they didn't need to put any more tubes into me, they could use the one that was already there. I agreed to this arrangement and I was started on Nutricia feeds.

Initially I was on a twenty hour feed daily, the feed was delivered slowly and for longer in order to see how my bowel reacted to it. Over the coming days they would increase the rate of feed and reduce the length of feed until I was just on overnight feeds, that way it would cause the least amount of disruption to my life. My bowel seemed to handle the feeds well, the only side effect being completely watery stool but my bowel movements had been like that since the bowel surgery. A Nutricia nurse was brought into the hospital to train me in using the Nutricia Infinity system. It was remarkably simple to get to grips with and soon I was setting up my own feeds under the watchful eye of a nurse. I felt fully in control of myself for the first time in a very long time.