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So I'm working on a longer, more indepth blog for on here but for now I thought I'd just post a little update. I've been out of hospital about 2wks now, good going for me. It hasn't been without it's troubles though. We're working on my pain management at the moment, I've been in alot of pain. I don't like talking about pain it's so exhausting and disabling. When I came out of hospital previously we would go on shopping trips to cheer me up. I can't even imagine doing that now. When your in pain everything takes that bit longer. Everything takes me that bit longer anyway because I'm out of breath! The pain has been creeping up on me slowly, I didn't think much of it, I was just having a bit of extra oramorph here and there so it's so devastating to have pain that we're now struggling to control. Except for the recovery period post transplant and even pre transplant I never had any trouble with pain. I'm reasurred by my hospice doctor and my mcmillan nurse though that I'm on teen tiny doses of everything, there's plenty of scope to go up on doseages and even a possibilty of admission to the hospice for symptom management to allow us to get this right. I'm not worried the pain has already started to improve so we know I'm on the right drugs it's just about getting the dose right. I think I'm going to leave it there, keep your eyes peeled for a blog facelift!
So I guess you could say my blogs turn up like buses. Anyway another weekend in Wakefield world of course it can't be straight forward. As usual if I'd have gone with my gut instinct earlier in the week or should I say mum's gut instinct I might not be typing this now. All week I've said to mum "something is wrong, I can't pin point it, it's nothing in particular its just something!" My nausea doesn't just flare for no reason usually, but it's the first thing that does when something is wrong. Mum's offered to call the ward on more than one occasion and I've said no because it's nothing in particular. My nausea has been so bad tolerating even water has been difficult, I was cold yet my cheeks were flushed with no temperature, I was generally weak and exhausted. People were having conversations with me and my eyes were just closing from exhaustion. I've been naughty really because I have been pretty unwell but I was enjoying being at home so much and I was being closely monitored. We can't do our own bloods weren't to know anything was wrong. Anyway my swelling in my ankles, both of them, has been bad, along with swelling in my knees and face, basically my weight was up and I was carrying alot of extra fluid. Mum phoned transplant outpatients to see if I could be seen in Tuesday morning clinic. The clinic was already over booked and it wasn't possible but my doctor wanted me to go to A&E and have a doppler scan. As soon as mum got off the phone and explained the situation I flipped. There wasn't a chance I was spending the day in A&E for a doppler to rule out a blood clot, on which part of my body I wasn't sure because I was swollen from fluid all over! I'm not saying for a second I know better than a doctor but I do know my own body and I knew I didn't have a blood clot. Nope, I had other plans that day, I went out and got my hair done and it did me the world of good :-)
As mentioned in my previous blog I went to the hospice on Friday. On Saturday I was asked to go to the ward to have blood taken. So we slowly got me ready on Saturday and made our way to the ward, I had my bloods drawn from my port and we left again. On Saturday afternoon we got a call from the ward sister, she'd spoken to the on call doctor I needed to go back to the ward for an IV Magnesium infusion. Gutted, I instructed mum to grab a few things and we left after my district nurse had changed my Nozinan infusion. I knew the IV Magnesium infusion wouldn't just be two hours long, I knew I'd be staying in so we packed some Pjs too. Sure enough I stayed and that's where things are upto at the moment. I was very dehydrated on admission and I'm still on IV fluids now but my magnesium was corrected with the infusion and I'm hoping to get home today, provided my potassium (for those that are interested it dropped to 2.4, new record for me) has picked up also, Fingers crossed.
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.