Unfortunately my lung function is being uncooperative and is currently about 13% despite two and a half weeks of IVs. My sputum is also still being really stubborn, thick and an effort to move. This means I have been attached to IV fluids 24 hours a day to help keep it moving and much easier to cough up and spit out. Another issue which has (unsurprisingly) reared it's ugly head is my chest pain. I suffer from chronic chest pain due to the constant inflammation and infection, but when I have an exacerbated infection the pain obviously increases, not particularly helped by super intense physiotherapy! Luke says that I am a different person when I am in pain - drained of energy, irritable, very tired and it affects my sleeping, eating and obviously my breathing. Everything is a constant effort, even taking a simple breath. Hence my increased need for the non-invasive ventilator. It also knocks my confidence a bit. So the doctors have increased my background morphine dose as well as my 'breakthrough' doses. They have also said that if I want to I can go back on a continuous subcutaneous morphine pump to ensure the pain is continually managed. I am a bit reluctant to do this, but the higher dose of oral morphine is making me a bit drowsy and nauseated, so perhaps it may be the best option just for the short term. Another little niggle is that my oxygen saturations are playing around a bit in the early hours of the morning, sitting at around 87% to 91% despite being on the ventilator... Hoping that this will get better once the infection subsides further!
As my infection markers have reduced a little, but nothing else has really improved, the doctors have decided to completely change all my IVs. So now I am back on Meropenum and Colomycin but they have also added Chloramphenicol (which is four times a day, boo!). They have stopped the IV anti-fungal and 24 hour Ceftazidime (one less 24 hour appendage, yay!). This means i can also restart nebulising Tobramycin which I've always found effective. In essence we have hit the 'reset' button so I am assuming I will be in here for another two ish weeks to see what this cocktail does to me!
We are playing a long game here and the main thing is that I remain fit for transplant. Harefield are fully aware of my current condition and who knows, perhaps I may get a call whilst in the Brompton! I'm still living with that hope of receiving that life changing and saving phone call. My whole family are.
|Oxygen tubing and fluids|
|Ceftazadime infusion... no longer!|