Over the last few days we've been doing the aminophylline weaning. It can take a while to get me off the drip and back onto oral theophylline, but today we eventually managed it, and now all is looking hopeful for discharge tomorrow :oD I usually have a couple of days on the ward between the infusion coming down and me going home, but I'm not going home alone this time, as I normally would. I'll be going back to Mum's for a couple of days of TLC, and then going to Lancashire with O for our slightly curtailed holiday. My mum is understandably worried about me going away, and doesn't really want me to go at all, but I need the break after the events of the past 2 1/2 - 3 weeks, and it's not as though O and I are going to be getting up to a huge amount of activity. The plan had always been to spend lots of time together writing, whilst doing some other nice things around that and maybe meeting up with one or two folk we know over that way. The most tiring bit is going to be the drive there, which RAC Route Planner estimates around three and a half hours, but that's without stops, which we'll definitely be having. Once we're there though, we can relax and have several days there before driving back to Newcastle on Friday. I know that I'll have to pace myself carefully, and that I'll be more tired than I would otherwise have been, but I'm sure O will understand that.
So the aminophylline is down, and I'll be going down 'south' (whilst it's still very much up north). The next thing to get down is the water retention, which is still very bad, all around my hips and middle, tender, and making me more enormous than usual, which I hate. Having the infusion down should help, partly because I don't have the extra fluids going in, partly because the aminophylline was in saline and the salt will have been contributing to the retention, and partly because I can now get more mobile than I was. Then there's the steroids to start getting down if possible. These days my maintenance dose is a whopping 85mg, but while I've been in here it's been put up to 120mg! The trouble is that my lungs notice the slightest drop in prednisolone so I have to reduce it ever so slowly, but again, when I do manage to get it down a bit then it should help reduce some of the water retention as well. I can't wait for that.
You know, for all that I'm 120 miles from home I've done remarkably well for visitors. Obviously Mum and J have been in to see me (and bring me my meals as the hospital doesn't have it own kitchens so can't cater around my multiple allergies), but I've also had lots of others visit too. O, who I'm going on holiday with on Monday, lives in Edinburgh so she's been in several times, as has F. I met both O and F through the Open University, more specifically through the OU Students Association (OUSA) fora, and have built up great friendships with them both and met up with them on many occasions now - sometimes up here in Edinburgh; sometimes they've come down to Newcastle. There's another OU friend, K, who I did the Children's Literature course with, and who also lives in Edinburgh. She came down to Newcastle one day last summer for an afternoon get together with a few other CLit folk, and she came to visit me in hospital during this admission. Then I had a friend from Newcastle visit me. N now lives in Aberdeen and was on her way back there after Christmas, but decided to stop off at RIE to see me :o) And today Wheezy Tux came to visit. Wheezy Tux and I initially met on the Asthma UK discussion boards, and then became Facebook friends. Today is the first time that we've met face-to-face, and it was great finally to meet up as we've missed each other one way or another each time I've been up to Edinburgh before now. It was lovely. Wheezy Tux is lovely. Friends are lovely and I feel very blessed to have so many people who care about me, and very lucky that I can be so far from home yet have friends come to visit. I also have an abundance of get well cards. Some are from folk from Newcastle, but most are from people I've met through the Open University, and today I got a lovely one from a whole group of people I did the Children's Literature course with, only three of whom (and the dog of one of them) I've met in person. Of course, my other friends from Newcastle have been keeping in touch, some through Facebook; some through text, so I really haven't felt alone while I've been all this distance from home. I am ever so lucky to have such wonderful people in my life. Thank you all.
4 comments:
Up or down I hope you get through relatively trouble free. Enjoy your holiday.
I've just done a blog catch up hence me replying to your earlier post! I'm so glad to read that you're doing better :) Take care flower xx
Still positve, you deserve better. Good luck, soon be spring!
wheezytux loved meeting you too!!!! hope you have a fabby time away! x
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