Whilst in hospital there is no sense of how each day is going to unfold. I have to take every day as it comes as each brings its unique set of challenges. However, there are some things that are commonplace and that I do not enjoy; the first, the act of waking. I know that each day I am going to wake up with the need to cough some disgusting sputum off my chest. I hate the ‘first morning cough’ as it can be quite painful and I sort of feel my rigid rubbishy lungs unfurl into life, which takes them quite a while! I also feel incredibly sick due to both the coughing and the cocktail of drugs I have been taking. Then I will most likely need the loo. At 7am I’m usually still attached to my 2 hours worth of morning intravenous antibiotics, so I need to navigate the wires, take my ventilator off and put my hi flow oxygen mask on. It is really hard in the morning as I’ve had air artificially pushed into me all night, it takes a while to realise that I can breathe a little through my own devices (although I am still needing my NIV (Non Invasive Ventilator) pretty much 24/7 to ventilate me adequately). Then I push my drip stand to the bathroom followed by the wires of the oxygen. Afterwards, back in bed I get onto my NIV and wait for breakfast to arrive. Over the last few days I’ve felt that my lungs have been overflowing with sputum, so I’ve often done an early morning physio session on my own before Luke arrives. When breakfast comes I don my facemask again and munch away at what I can and take breaks on the NIV when I get too ‘puffed’. It takes quite a while to eat brekkie, I tell you! Not that I’m moaning though, as the doctors have now got me on fairly high dose anti sickness medications in the morning which means I can actually eat breakfast!
The reason I said that I don’t know how each day is going to pan out is because over the three weeks that I have been in here only now am I feeling that I may turn a corner. PLEASE don’t think I’m being negative or moany, but in the last two weeks, the bacteria in my chest have become resistant to two different combinations of antibiotics, which led to two pretty horrendous bouts of respiratory distress and this needing several days to recover from. (Also meant that I couldn’t see my lovely bestie mate when she was meant to come and see me last Tuesday). The way I feel when I have a new, or worsened infection is not very pleasant. Firstly, I tend to get more pain on my ‘bad side’ (right lower lung) and this feels like where all the sputum pools and almost ‘comes from’. The pain is so bad that it was queried as a broken rib. However, the x-ray showed no breaks, just lots of ‘fluffly plugging of sputum’, nice! Then I can’t breathe and this is further worsened by panic! This is also usually accompanied by a temperature and a drop in my SpO2 levels, usually to the mid 80% point (on the NIV). It’s just so hard to deal with these setbacks at times as the only thing I can do is physio to get the rubbish out of my chest, trust the doctors as they adjust my oxygen levels and change my drug regiment to knock the bacteria on the head. I end up just lying in bed on the NIV just praying that I will come through the ‘blip’ and survive so I might get a transplant! It’s just also been a constant worry for my family as for several days I was struggling to breathe on the ventilator alone which is NOT a good sign!
Nevertheless, several things have been put in place which seems to have things turning to a more positive direction. Firstly, the doctors have decided to try Tobramycin again, on a low dose and so far (praying every day for this) the antibiotic levels in the blood seem to be OK, and my infection markers have come down slightly. So my IV drugs now consist of Fosfomycin, Tobramycin and Ciprofloxacin. I am also being trialled on a new NIV. My old machine was a bit archaic and I have had it for the last two years, and used it overnight for the last 9 months it was felt by the physios that something could be provided which did the job a bit more adequately. We’re still in the early stages of trialling it, but it really is a great machine! It ventilates me at much lower pressures than my old NIV which is of great benefit and also has an internal battery which means it’s so much easier to walk around with it. Also, this is the only machine of its kind at the Brompton and if I get on alright with it, they will order one for me to go home with! However, I shall not let myself get upset if it doesn’t work out, because ultimately I might get new lungs soon and not need it!! The doctors here are also reminding Harefield that I am very much in need of those new puffers quickly!!
Although it has been a very tough admission so far and I am still unsure as to how long I am going to be here for, or what might even happen next, I’ve still got my faith and the promises that brings and the love and support of an amazing family and group of friends. No matter what happens to me, it’s certainly a lot easier with them by my side!
|Outside ventures with physios, gran and Luke! (Old NIV!!)|