Time to Press Reset...

One week on and nothing much has really changed (unfortunately). It has been necessary to play the role of the 'patient patient'. Usually I do not play the role well, but as I have been feeling a rubbish-y it has been a bit easier! It is really difficult to put into words my hospitalisation and recovery. As I have said in many previous blogs my admission is not going to make me 'better' per se. The main aim is control my infection, as I am never going to be infection free due to the nature of my lungs, but the level of infection can be dramatically reduced and managed. Therefore the aim of my treatment is to reduce infection markers (CRP provides an indication of the magnitude of infection, whereas white blood cell count is always elevated as I am always colonised with Pseudomonas) and to increase my lung function and other clinical observations.

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

Fluid drip

Ceftazadime infusion... no longer!