boing...

After a fairly productive and stable week (have a look at the LLTGL Ambassador's blog I wrote last week by clicking here, my call in my own words) last week of course I couldn't have a straight forward weekend, they just aren't my thing anymore!
On Thursday morning I was woken at 6.30am with stabbing chest pain. I sat bolt upright and tried to work out what was going on. It felt like heartburn but far worse, I quickly reached down and turned off my PEG feed and text mum to come in and help me. I didn't know where to put myself, no position was easing it, I sent mum downstairs for Gaviscon incase it was 'just' heartburn whilst I started taking painkillers, oramorph and co-codamol. I was doubled over in tears by this point and we just didn't know what to do. I was so scared it was something heart related, my grandad has recently passed away from a heart attack, he thought he was having heart burn and left it 12hrs before getting help. After half an hour things had eased a bit, Thursdays are clinic days, my hospital are cardiac experts so I decided I wanted to wait it out until clinic at 9am. I really wasn't very well and don't quite know how I made the journey but I did. As soon as we got to reception we told them I was having chest pain and I was seen by a nurse and doctor straight away. They checked my obs, my heart rate and blood pressure were raised but that's normal for me right now. I also had an ECG which thankfully looked ok. I was told I was going to be admitted though so things could be monitored, I agreed, after how I felt earlier in the morning I was almost relieved! I was sent for a chest xray then sent straight upto the ward. I got onto the bed and just slept, I was so exhausted.
On Friday I was seen on the ward round and had a chat with my consultant, he said he felt it wasn't anything cardiac related despite my blood pressure and heart rate still being abnormally high and what I had experienced was an esophageal spasm from acid reflux from my PEG feed, basically heart burn had caused my esophagus to go into spasm. It's said to be a very painful condition and can be likened to that of a heart attack. He reviewed my reflux treatment, very important as I have a hiatus hernia too and also prescribed Gaviscon for after every meal and pre and post feed. I agreed seen as my blood pressure was still very high and they had been playing around with my cardiac medications to stay and be monitored for the day and go home Saturday. And that's exactly what I did! So I'm home again and looking forward to a slightly more organised week. On the subject of being organised, we saw my GP yesterday to sort through my medication. I'm going to leave you with a pic of what I take on a 'normal' day. Enjoy!

One days worth of medications, this doesn't include my IVs of which I have 7 (!) a day, my continuous Nozinan infusion and any other painkillers or antisickness medications I may need.Breakfast!

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 :)