With my chest playing up at the minute, past memories have been haunting me this week, perhaps making me more nervous.
It was 2 years ago and I had been in and out of hospital with my breathing and had a string of respiratory arrests behind me. My surgeon was going out of town for a week and so the week before he took me in for yet another clear out. I had a stent in at the time as my airway would not hold open. He had been trying to talk me around to have a trachestomy in, but I was still filled with scary memories of ICU years previous and had refused.
Things were getting tougher, to the point that on college days, I would get up at 6, so I had time to get dressed and run treatmeants and leave by 8:30. Every 2 hours when lessons changed, I would spend 30 mins running nebs and an hour at lunch time. But I was getting through the day and that was all I cared about.
But my airway was still complaining. It got to the point, where I couldnt get around the house without near passing out.
I had emailed my surgeon and asked to talk to him as soon as he got back from his trip as as much as I didnt want them to, I knew things would need to change.
Wednesday, halfway through his week off and I was really struggling and so the ward admitted. The SHO was an arrogant twat who basically gave the impression that I was wasting peoples time, because I kept coming in. All they could do was run nebs and give me steroids, which I could be doing at home.
I had prebooked ticket to see the premier of New Moon with a friend for the midnight showing and I was desperate to go see it. So when they decided to discharge me on the Thursday, I just went with it.
I was exhausted and even borrowed a wheelchair as I couldnt make the 10 steps from car to cinema. The film was wonderful, but throughout, I was concentrating hard on my breathing, and not just at the topless scenes.
My friend took me home and saw me to bed where I slept a broken sleep. Mum was in work the next day till 12 and I was home alone. I awoke struggling, but managed to get my neb on and after about 20 minutes was settled a little. I was so exhausted that I fell back asleep, to do the same thing only 20 minutes later.
At one point, I knew mum was due home soon, so I bundled up my neb, and curled up on the floor in the living room, remembering to unlatch the front door on the way past. My reasoning? I could hardly stay awake and if my throat went again I didnt want an ambulance crew having to deal with stairs, as I am not exactly light.
Mum came home and imediatly told me off for not phoning her, but I didnt want anyone to worry. At that point, I was fairly ok and although still struggling I was managing. I explained that I didnt want to have to face that annoying SHO again and so I didnt want to go to hospital. I soon fell asleep again and mum must have dozed off next to me. Next thing I know she is shaking me awake and running the neb for me, apparently, I sounded like I was dying.
The ward said to come straight over and within minutes, I was on oxygen and sat in the bed closest to the nursing station. The on call doc had been called, but it was a busy day and it took a while for him to come. He increased all my meds and asked for an ICU doctor to review as he was unsure about leaving me on the ward. At this point, the SHO was on hand over and said it wont be nescary etc but the ICU doc had already been called.
He quizzed me on my history and took some blood gasses. At this point I was settled so I had sent mum and dad home as they were exhausted and there was nothing they could do.
Once the gases were done, the ICU doc decided he wasnt happy for me to stay on the ward as he would prefare more intensive monitoring and so I was shipped off to ICU. I had never been moved to ICU while awake, it was most odd and all I could think to do was apologize for all the fuss I was causing, and of course to run the loo before they shipped me down there. Of course, even moving down there was a job, as I had to be acompanied by a team of 2 docs and a load of equipment. It was very overwhelming.
That night may have started late, but it was a long one. My nurse was wonderful. She dimmed all the lights down for me and sat outside the door so she could still see the screens but so I had some personal space. But the night continue as the day had, in that every time I went to sleep, I would suddenly wake up unable to breathe.
By morning handover, we had gotten into a pattern of me being able to get 10 mins sleep and then topping up the nebs and so, I had avoided any scary situations. The new nurse coming on, was a little more relaxed and started talking to me about breakfast.
And then, while in mid conversation, I coughed. And thats when things got scary.
Suddenly, I couldnt breathe. I looked at the nurse, with fear in my eyes and tried to tell her, but the words would not come out.I tried coughing to clear it, but I could not get the air in to cough. I remember watching the nurses expresion suddenly change as she began shouting for help, about 6 seconds before the machine began to alarm.
The sudden movement on an otherwise peaceful sleepy ward was intense. within a minute, there were doctors everywhere and the crash trolley was being bought in. The ends where pulled off the bed and a doctor began to check my cannula was still working. Typically it wasnt, and the doctor swore loudly, before tipping a bottle of iodiene up my arm and bed to attempt to put another one in.
Every breath was fight. The anesthist was leaning over me from behind, ready to take my breathing over. The injections to paralse me where ready in another doctors hand on one side of me and another doctor was talking me through breathing. Everybody else was starting at the moniter was my oxygen sats dropped and dropped.
Slowly, the steroids they had pushed through began to work and my oxygen levels began to stablise and then slowly began to rise.
After about 40 minutes, the staff began to drizzle out and the crash trolley was wheeled back out into the hall.
Mum and dad had apprently been trying to phone, but had not got any answer (oops) so had just popped over to see how I was. They were allowed in to see me and I told them what had happened, well a watered down version.
That was one of the scariest moments of my life. The drugs and fighting and I knew that last time, it had been a close call, as they can not get a normal size tube down my throat, I have the have the same size tube that a toddler would have.
Mum had been with me about an hour and was asking if I wanted anything from the shops. It was Saturday and she usually went shopping. But for the second time that day, disastour struck. Exactly the same as in the morning, my throat suddenly shut down. This time the docs knew what to do,my parents however were not prepared and I am glad that I was not in the waiting room when they had to leave the ICU.
Things once again got under control, but by this point we knew something had to change and change fast. My surgeon, who was far away, was phoned several times that Saturday morning, whilst they tried to asses the situation. Another surgeon was called in as an emergency and although he did not know my case, he agreed to come in and see if he could help. The emergency theater team where put together and I said good bye to my parents, not really knowing what would happen next.
This time, I needed a bigger team and the transfer from ICU to theater, was done with at least 6 staff members and a lot of equipment.
The doc removed as much as he could out of my airway, knowing that he could not take to much as my whole airway would collapse.
I woke 2 hours later in the ICU aching more than I had ached in a long time. I needed high flow oxygen to keep my levels up, my blood gasses where everywhere, but that could be dealt with. Every time I breathed, you could hear a deep rattling noise. Tissue had been removed and I could breathe, but every time I did, it aggravated the area and so the area swelled.
I hadnt slept in two day and every muscle in my body felt like it were on fire. Every breathe felt like it would be my last. I hate bedpans and commodes, but I could not get out of bed and so the discussion began to insert a catherter. I hate those as well, but at that point, I felt so beaten that I was about to agree.
Mum and dad sat by my side, holding my hand and willing me to try and sleep. But I couldnt, I kept thinking, if I sleep, I will stop breathing again,my body will give up. The ICU docs came to see how I was doing and I literally begged them, with tears running down my face, to sedate me and put me back on the vent. I was to tired to keep breathing. They want me to keep going, but promised to review me every hour. They were afraid to knock me out and not know how my throat was. That the tube would further irritate my throat and cause more swelling that they could not get passed. If this happened, even a trachestomy would be out of the question due to its placement.
That was one of the longest evening I have ever experienced. I watched the second hand on the clock as sweat poured down my forehead from the effort. The tears eventually dried up and I resigned myself to what would be.
Slowly the seconds added to minutes and then to hours and I began to get some rest in short 10 minute bursts.
Again, the staff were wonderful. Encouraging me every step. Trying everything they could. I needed a more permanent IV line putting in, but even the best doctors could not get a PICC line in my arm as the viens were ruined.
That weekend lead to a lot of tears, from myself, my family and the staff. The theater nurses made jokes about what I was going to wear to the staff Christmas party as I spent as much time in there as the staff did. I had a few more close calls and several more trips to theater while my surgeon tried desperately to get hold of my ENT surgeon, who had just vanished.
In the end, I spent almost 3 weeks in the ICU, developed a very bad infection in my blood that was only picked up by chance before it did damage. I got my first trachestomy and learnt how to care for it myself. Developed an infected line that came pretty close to killing me once again and became a good teaching tool for the ward staff.
I was admitted in November and I was discharged in February.
That first weekend though, is one that haunts me most. The sound of all the docs, the pain of my ribs, the fear in that nurses eyes. I can see it all as clear as yesterday. At the start I needed my throat clearing every 4 weeks, that then dropped to every 2 weeks and in the end, I was needing it cleared every day. I think that is why I am so on edge now. I dont want to end up back in that position. I dont want to fight for every breathe, I just want to be able to breathe. But, I know I can cut myself some slack on the occasions that I do freak out, as they are founded on true ground.
