Phew where to start? I can't believe its been a month since I last blogged! I was so relieved to get the last blog out of my system I was so sure I'd be doing it again soon but I guess things didn't work out that way. I've been home again now two weeks. A good time span for me! I think I've achieved what I wanted to in the last two weeks, national transplant week kicks off on Monday July 4th and I wanted to say thankyou. Thankyou to my brave donor family, my inspirational donor, hard working medical team, selfless parents, family and friends and of course to you, the public, I'll probably never meet you in 'real life' but without you I wouldn't be able to get through my transplant journey and everything life throws at me. So to the public I made this appearance on ITV Granada this week ( Click here to view it). Following that appearance I received these
The support and kindness of strangers really is overwhelming.
Health wise things have been tough especially during this past week. Last Friday (24th and notice its weekend again) I managed to drop my Nozinan pump on the floor in the bathroom and crack my syringe on the tiles. Gutted, I pulled the syringe off and called the district nurses. They were extremely busy and weren't able to get out to me for a further 5hrs. Since then my nausea has not been well controlled at all, I started IV Cylizine on Tuesday 28th which has at least helped me keep my tablets down which is the most important thing. On Friday 1st my Nozinan pump was increased, I'm now on the maximum dose and thankfully it seems to have started to kick in. Last night and today I've had cravings for food which I haven't had all week so it looks like a start. This week I've been fully dependent on my peg, tube feeding just to keep me going. I also started with some pain this week, well I say this week, it's been slowly building up for a while and I just haven't done anything about it. But recently its become more troublesome to the point where once my sleeping tablet has worn off (around 4hrs) I can't sleep, even after oramorph. I mentioned it to my GP when I saw her at the start of the week and she decided MST (slow release morphine) would work best. And it has worked pretty well, the 'spikes' of pain I was getting are not as bad. The under lying level though I think may need some work as I'm still not sleeping. On Wednesday (22nd) a nurse from the palliative care team came out to relieve mum for a few hours, I got scrabble all set up on the table and when she turned up I was just to exhausted to move. I slept on the sofa whilst she did sudoku, I felt so ignorant but I just couldn't keep my eyes open. On Thursday (23rd) clinic was long, my water tablets were upped again as my fluid retention has been terrible. Upping my water tablets has in turn dropped my potassium, another rant for another day (to follow in next blog!) My Mcmillan nurse dropped in for a visit after clinic. I like seeing P she's so proactive with management and treatment, if something can be done for a symptom she'll do it. She has confidence (along with experience) something alot of doctors when prescribing new medications for symptom control don't. She suggested increasing my Nozinan to the maximum dose to see me through this rough patch and increasing my oramorph, both of which we did and things have picked up. On Friday after a long and complicated week I was desperate to get to the hospice and chill whilst having some reflexology. At the moment I have very dry skin at the base of my spine and not much 'padding' around my tail bone anymore, its about to break out into a sore. I just couldn't get comfortable on the reflexology couch so it took 3 staff to get me comfy in a chair in the dayroom. I love the hospice, they're so accommodating and nothing is ever too much work. Saturday, well I'll talk about Saturday in my next blog.