I’ve wanted to write a blog recently but I haven’t really known what to write. I hope my ramblings that are about to follow make some sort of sense.
When you tell people you’ve had a transplant they think it’s a cure, everything is sorted and you can immediately do everything you could before.
I had a bit of a setback around February time with a bad UTI that knocked me for six. But by the beginning of April I felt like things were back on track, I was enjoying days out and doing normal things that people take for granted.
Fast forward a few weeks and I began to feel unwell, I couldn’t really describe how I was feeling which was frustrating but I knew that something was wrong. I stupidly (and have maybe learnt my lesson) waited 4 days before going to A and E. I felt ridiculous saying I know somethings wrong, I feel weak and wobbly but have no other symptoms. Safe to say A and E took me seriously and I was looked after extremely well. Every test they did was clear apart from my white cell count which suggested infection but they weren’t sure where. I had ecgs, bloods, chest x Ray, a cannula put in and some generic antibiotics that would hopefully cover the infection wherever it was.
I was in good spirits and thought that a couple of doses of IV antibiotics and I would be fine, I had packed and overnight bag with enough things for one night (I thought that was me being prepared).
To cut a very long story short. From that night I spent 19 more days in hospital, all of these stuck in a single room with my own toilet. I was in a negative pressure room and wasn’t allowed to leave (not even for a walk along the ward), this drove me insane towards the end of the stay! From the point in A and E to me leaving hospital on Thursday evening I was ill. Seriously ill. It was the hardest admission I have ever had (even that of after transplant).
A CT scan discovered that my lungs were, in the doctors words, a mess. They were full of bacteria and this explained why I was struggling to breathe. I was placed on normal oxygen, humidifier oxygen and high flow oxygen but nothing seemed to be helping and I was obviously panicking that even with all that help I couldn’t catch my breath. All the teams involved in my care, the intensive care team, doctors, physios, nurses, infectious diseases were all amazing but according to my Mum (as I don’t remember) they were all pretty worried about me. I remember a ventilator being mentioned and telling A that I didn’t want that because I would be worried that I wouldn’t wake up again. In my head I still don’t think I realised how ill I was, and that I might not actually have much choice in the matter!
The diagnosis… CMV which is explained a bit more here. This caused Pneumonitis and all the bacteria in my lungs.
So that is where we are at. I almost feel I’m back to square one but I know I shouldn’t be frustrated. The doctors explained that it is a life threatening illness (which scared the crap out of me, I’m not going to lie.) I’ve had 2 weeks worth of IV antivirals and I’m now on oral ones and probably will be for 3 months. I’ve been warned that it will take me up to 6 weeks to recover, but I’m here to tell the tale that’s the main thing.
Since being home I’m finding daily tasks a struggle again so I’m taking it easy, also finding it hard to sleep as the nights since I’ve been home I’ve woke up in a sweat after dreaming about being in hospital and not being able to breathe (maybe it’s playing on my mind more than I thought).
I hope some of this blog makes sense. I just wanted to get it all off my chest, and reiterate that transplant isn’t a cure, it’s another set of potential issues. Also wanted to say thanks to the medical teams that were involved in my care and thank them for saving me! It puts everything into perspective, we’ve had to cancel another holiday (to Center Parcs to celebrate my 30th!) but I’m here, I’m on the mend and I managed to escape before my birthday!
Will leave you with a few pictures from my hospital stay! (And good old snap chat covering up how ill I was feeling).