Saturday, April 26, 2014
Best place to start, always at the beginning. When I last wrote, I was avoiding an admission by taking oral antibiotics. You guessed right, they didnt work and so I was admitted. It was just under 2 weeks the admission, on a new ward, which I fell in love with. The staff were wonderful, much more equipped for dealing with my age group (its a cf specialist ward) not to mention much better facilities such as fridges and an patient kitchen. There was some talk about if I were allowed to stay on the ward due to my trach, but then, non of the wards are really equipped and so they agreed that while I was well, I would be allowed to continue on this ward, as long as I was able to be seen from the nurses station. I had a lot of trouble keeping lines, they agreed on putting a longer lasting line in, but after 24 hours it was tracking up my arm and so it had to come out. For the remainder of my admission we fought with cannulas. Towards the end of the 2 weeks, I was starting to feel worse again and sleeping alot, but I also had a holiday booked with my niece and so, I was discharged late on the Friday and flew early Saturday morning.
The holiday was great. Lots of food, nice drinks and wonderful staff. We saw lots of sun, hired a quad bike and toured around a lot, played with nerf guns and just generally lazed about having fun. After shooting some of the bar men with the nerf guns, we bonded well with them and spoke to them a lot. One floor in the hotel wasnt being used due to being low season, so we played there and were able to play with the guns without bothering anyone. Neither of us wanted to come home.
But come home we must. I had been getting gradually sicker and the plane journey near finished me off. So much in fact, that about 10 mins away from home on the drive from the airport, I began coughing and couldnt stop. The crap off my chest had built up during the dry flight, not to mention that I didnt get time to grab a drink due to an annoying easyjet ground crew, who even asked if I were a heavy smoker, but whole different story there. While coughing, the stuff on my chest, instead of clearing, kept blocking off my airway. Panic all round, whilst I refused an ambulance, determined to clear it, but deep down, the longer it went on, the more I began to panic. My history has taught me to stay calm and think rationally and it was this, that after about 45 minutes of work, allowed me to clear my airway, without the need to a&e.
Retelling the tale the next day to clinic though, we decided it would be best to come in and hammer the IV medication again. Its no been just over a week I have been in and I am as yet to feel the benefit. Physio can hear stuff finally starting to move, but I am just sleeping tons, so fingers crossed that something gives in the next week and I can begin to feel alive again.
In the mean time, I am running literally hundreds of nebs a day. Morning an evening 6 at a time (atrovent/bricanyl/7% saline/regular saline/Dnase/tobramycin/Budesonide)Plus 3 lots 3 times a day. My last admission also showed I was growing ecoli in my lungs, so I now take a med when I eat to try and stop that. But, I have plenty to keep me busy and I am just making the most out of my time away from hospital.