I’ve been home for a week now and feeling absolutely knackered. They said I would feel tired for two or three weeks, and they weren’t wrong!!
It’s been very strange since I left Southampton, the ward somehow became a safety blanket and leaving left me feeling very vulnerable, even though I was desperate to go home. I was definitely completely sick of being attached to various drips and pumps almost 24/7. Just as one drug finished, a quick flush of the pipe and the next one started. Sometimes – three at once!
Anyway, I have a four page check list of dos and don’ts – which following my discharge meeting, Zig very kindly made enough notes to call it five pages! Plus, enough drugs to start my own pharmacy, but as I have to take a minimum of 26 pills a day they’re not going to last long. Pills to help me sleep, pills to stop me feeling sick, pills to stop my body attacking the graft, anti-fungal pills, antibiotic pills ( hello penicillin my old friend), and anti this pill, pro that pill, stop this pill and help start something else pill. I’m sure I rattle as I walk up the bloody stairs.
I feel hot, then cold, then sick, then realise I have a headache, and notice I’ve been up for two hours – god I need a lie down! As much as hospitalisation and the transplant were awful, this recovery is going to take some getting used to.
But, and it has to be a BIG BUT, I am improving. My blood counts are rising daily, hemoglobin is almost back to normal levels, and my neutrophils are strong enough to keep my internal bugs and bacterias in the right place. They say I am doing well, and that everything is going in the right direction. No rashes, no green poo – so I am quite pleased! 🙂 My appetite is slowly coming back, and I can now swallow, but I feel like I have gone back to being a child. The constant salty taste in my mouth – I suppose from the drugs – makes me just want to eat simple strongly flavoured food to overcome it, and Dairy Lea spread on bagels… just divine!
I will try to keep you all updated as we go, but it may be less frequent than while I was in hospital. I am also looking forward to seeing people, but not yet… and as for a visit to a supermarket, well that’s my idea of heaven, but that’s also a couple of months off yet. I can hardly fart without permission from Southampton!!
One thought on “The Recovery (part 1)”
Still the amazing positive Lucy despite everything! You’re definitely a ‘don’t let the bastards grind you down’ girl and it still shines through no matter what. I can’t begin to understand what you have been/are going through as I have never known anyone that has been anywhere near as sick as you so I’m not in a position to hand out any advice or platitudes, only to say take each day at a time and keep that positivity because I truly believe that a strong mental attitude is a big part of the battle. Take care Lucy – oh, and ‘keep taking the pills’!
Love Julie. Xx