Monday, 28 March 2011

I made it home. Gosh that feels good to say. There was a point where I saw myself never leaving my hospital room again. I sit here and wonder how we've managed it, I say we because the transplant team, nurses, physios, everyone played their part in getting me home. It's taken hard work, perseverance and pestering. I think it's fitting (especially with Mothering Sunday round the corner) I mention someone else that's HAD to play their part. Since transplant it has been a learning curve for my mum, pre transplant I wasn't on feeds, I didn't have a PEG or a port and towards the last 12mths before my transplant I wasn't in hospital (because there was nothing they could do but I did spend time in the hospice). Since coming home I'm on 6 IVs (steroids and an antibiotic called Meropenum), 12 nebulisers, 60 tablets a day plus oramorph, PEG feeds and fluids and a subcut Nozinan infusion (as antisickness not for psychosis!), the latter is the only thing that's looked after by district nurses. My mum is in two full time jobs, one as a carer everything from getting me dressed in a morning to washing my hair at night and the other as a nurse preparing IVs, sorting through my 40+ medications and ensuring I'm getting enough oxygen. I mean it when I say I don't know how she does it or where at times she finds the energy. If it wasn't for her I'd either still be in hospital now or I'd be in some form of care home somewhere. It deeply upsets me when her friend's say "can you just do this? I know you have alot of time on your hands!" My mum is my rock and I think it's fair to say I wouldn't be where I am now without her.

On March 11th I celebrated my 1yr Transplant anniversary. On the 10th I lit a flameless candle for the donor and her family on, a year ago a day that would have been one of the saddest days of their lives and I left it on for 24hrs. On the 11th I celebrated. I celebrated the fact that without my donor I wouldn't be here now, love, giving and new life. I had mum get me green helium balloons and we wrote messages on them, I ventured out of my room with mum, my nurse and physio to release them in her memory. We put annivesary banners and balloons up in my room and we celebrated and gave thanks. My physio took the snap, it would have been a good one if my eyes weren't shut!
Maybe I'll blog again in a few days when I'm settled in at home a bit but I think that's all I have to say for now :)

5 comments:

Dawn said...

Welcome home Rachy!!! :D xx

Mark W said...

Glad to here that you have been able to returned home I wish you all the best.I have just returned home from a short stay in hospital myself for possible rejection.Enjoy being back as I know I will:) look forward to hearing more news soon.
All the best Mark

Bitter_Angel said...

Yay for being hom

lulu said...

I think its so important to feel free to use your blog as a platform for you and you're one of the rare writers that just say it as it is. You must feel frustrated when trying to explain to others how life is now. Your mum is amazing and prob only both of you have experienced this journey in its enormouity. That oramorph must knock you out babe? It does the business though and keep you comfortable hopefully. Its great to hear that you're home...I'm sure such news has made many of your fam and friends beam xxx

RoseGirl said...

Glad to hear you are home Rachael! Praying for you...

Blessings & hugs from across the pond in Charlotte, NC!

 
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