I thought I'd give you a taste of what an average day on Foulis ward in the Royal Brompton is like:
8.00am - Wake up and round one of intravenous antibiotics (IV)... Meropenum and Ciprofloxacin (1 and a bit hours) As well as taking my usual plethora of oral drugs.
8.30am - breakfast
9.00am - nebuliser (Pulmozyme - to help thin mucous)
10.00am - physio
10.45am - time on the NIV to recover from physio (up to an hour)
1.00pm - Lunch
2.00pm - physio, with a bit of a walk
3.00pm - NIV time (hour ish)
3.15pm - IV round 2; Tobramycin and Meropenum (about 40 minutes)
6.30pm - dinner
8.00pm - physio and time to take oral drugs.
8.30pm - NIV time
10.00pm - Night time IV cocktail Mero and Cipro (hour ish)
11.00pm - start to settle for bed...
During the morning and afternoon I will also be guaranteed a visit from the doctors to discuss battle plans, as well as my good friend the phlebotamist... This is to check mainly for infection markers (CRP levels) and to check liver function, as the drugs can be quite harsh to it. Oh, and regular visits from nurses to check your observations (sat levels, temperature, heart rate and blood pressure). It's not quite what you may call a restful experience, it really is quite a fight when you aren't feeling 100%!
|Seductive sleepwear... NIV baby!|
The main thing that is concerning at the moment is my pesky heart rate. It keeps jumping around all over the place - behaving one minute and then for the next set of observations, it's tachycardic again!! Earlier this morning the doctors were talking of possible drug toxcicity, thyroid problems and so on... As I was writing, my registrar came in with some positive news - no thyroid problems, electrolyte imbalance or drug toxicity. She said that it could be due to the fact that after physio or eating, my lungs have to work quite hard as blood is diverted to muscels or my stomach my heart has to work harder. So I'll just have to spend a bit more time on my NIV after these activities. I hope that this will improve as my infection lessens. I suppose you could say at least I'm in the right place while they get to the bottom of this! I am trying to stay positive, however, I promised myself that this would be an honest blog. I am scared, chiefly because one would expect to get better when they come to hospital, but also, I am really anxious that this heart issue may interfere with my transplant. Obviously, feeling anxious and panicky is completely counter-intuitive, as these feelings will cause my heart rate to increase further! So I'm really trying to keep calm and to just chill out... Prayers for achieving this would be greatly appreciated!