28 Days Later (without the Zombies...)

I’ve not really much to update in the way of moving forwards health-wise since my last blog post. I’m keeping myself positive but my infection is still yet to be adequately controlled. So my Intravenous Antibiotics were changed again on Thursday to Aztreonam, Tobramycin and Chloramphenicol. I have also had an intravenous anti-fungal Caspofungin added to my routine too.

The most noticeable issue I have been having lately is my pain management. I have been getting incredibly bad chest pain which is due to a plethora of issues, but mostly due to inflammation and pockets of sputum sticking to the sides of my lungs. It feels absolutely revolting to the touch, sort of rattly and crunchy when I breathe in. It’s also very painful. Also, the sputum on my chest in the mornings is still an issue and as the infection rages I produce ‘gallons’ of the stuff, which inhibits breathing and makes me exhausted just getting it all out. What is worse is that my ribcage is so incredibly stiff when I wake there is little movement (rise and fall motions) in my chest at all. The lack of lung expansion is caused by the thick sputum sticking the airways together and, in effect, collapsing a region of the lung. This sputum is moved by physiotherapy and the associated pain is now managed using a subcutaneous (just under the skin) morphine pump which delivers a dose of morphine 24 hours a day. I can also have ‘breakthrough’ morphine injections in case the pain becomes more acute. I also have lidocaine patches which I can stick directly onto the site of the pain to deliver local anaesthetic over 12 hours. I have also been prescribed intravenous Paracetamol four times a day. The morphine pump and anaesthetic patches were all started on Friday and it has helped an awful lot. It did take a couple of days for the pain relief to build up in my system, but physiotherapy and moving around has been much more manageable now the pain is more bearable. In all honesty, I was a bit reluctant to go on a morphine pump... It all smacked so much of ‘end-of-life’-ness. However, I had a really frank discussion with my lovely consultant and he was of the opinion that the pain relief is not an admission that you’re going to pop off this earthy plain any time soon, but an incredibly important tool to ensure that I can do all my treatments and be comfortable in myself.

He also said, more accurately, that as I have ‘end-stage’ lungs, which means that it is a real battleground in there. The warring factions at work are Pseudomonas (bacteria), Aspergillus (fungus) and my own white blood cells, which in the mêlée cause collateral damage to my lungs including scarring of the lung tissue, production of sputum, inflammation of the airways and generally cause me to feel....well, mergh!? The docs are all working so hard to find that all important ‘recipe’ that will get rid of the infection as much as is possible with these CF puffers, without doing too much damage to my own body in the process. I feel comforted that there are still options available at the moment, but also disheartened that I’ve been in here for a month now and am pretty much no further forward than day 4 or 5 of my admission.

The one major concern I have at the moment is my haemoglobin levels. Throughout this admission my iron count has been steadily declining throughout my admission and the doctors really, really want to avoid having to give me a blood transfusion, as this will complicate things for me regarding my lung transplant. As I will be transfused somebody else’s blood I will develop antibodies against this, it could make finding a match potentially more complicated. As I’m a bit of a tricky match anyway, I don’t want it to become even more difficult!

Luke - finally relaxing!

Now, for more positive news! I have a brand spanking new hospital room!! My amazing physiotherapist (seriously this lady needs an award or something) and one of the CF homecare nurses decided that I’d been in my little box of a room for far too long and quick as a flash it was ascertained that ‘room 5’ was available and they moved me in that afternoon! It is huge and the TV is massive! It also has a sofa! Luke has also started to stay as a) the room is big enough (he practically has his own wing and b) nighttimes/mornings were so anxiety riddled that the doctors thought that as I get over the worst of the infection and as it’s been so long it might just help me a bit. (As well as save Luke some train fare!) Finally the physios are cooking up all sorts of little outings that I can go on... Tomorrow, all being well we’re off to Scoop, an amazing ice cream parlour near South Kensington. We shall be armed with Non Invasive Ventilators and O₂ canisters galore. So all in all, there is actually a lot of fun going on in this fight! 

I have been making sure I turn more of my attention to God and spending more time with Luke praying and I do feel calmer. In all honesty, how much can I really do? I battle so blimmin’ hard on all my treatments and really push myself all day every day to do it all to the best of my ability. There’s not a lot else I can do apart from trust God and trust the doctors and look forwards to the little treats that come my way!