Home From Hospital

Hi guys,

So sorry for not posting when I got home Ive been spending time with the family after missing them while I was away. Sometimes you just have to switch off and focus on whats most important in life.

Anyway, I got home on Thursday evening after a ten day stop over. I was admitted for dehydration as a result of my intolerance to jejunal feeding. I am currently getting 10mls an hour through the NJ tube which only amounts to 240mls of fluid per day. I am adding in as many tiny flushes of water as I can with my meds and between doses but again it's nowhere near enough. So my consultant is going to phone my GP to try and get them to organise for me to go and get IV fluids at a local hospital regularly so that I don't get so dehydrated again. In theory this is the best plan anyone has had for ages and it would mean I wouldn't have to spend so much time bouncing in and out of hospital with dehydration. However, based on past experience these kind of plans tend to fall apart in general practice. We will have to wait and see how it pans out, I'm going to see them on Weds or Thurs as it gives them time to catch up with the paperwork and hopefully they will be completely up to date by then.

I was told to go back to Durham tomorrow (1st may) at 11:00 for my new thinner NJ tube. They said not to wait for a letter and just go down to the endoscopy unit and they will fit me in as urgent. Again, we have some miscommunication because I received an appointment letter this morning dated for Tuesday the 8th May, which is next week? So I've been trying to phone the endoscopy unit to find out exactly when they are expecting me! Great stuff, more hassle that I really didn't need. I was just saying to hubby the other day how well it had all fit in because I already had an appointment with the pacer nurse on Tuesday afternoon so we only had to make one trip. So I spend the rest of the afternoon trying to find out what's going on.

Aside from appointments etc my new medications are still in the early stages. I have another 3 weeks of antibiotics to take and they are already giving me a sore mouth. Im on a tiny dose of pregabalin at 25mg three times a day and my gp is going to increase the dosage gradually. So for the time being, while I wait to see the effects of my new meds I'm stuck on my 10mls an hour. I feel so tired that everything is achey and shaky! I was having to use my wheelchair to get off the ward, it made me realise just how frail I'm getting. When I'm at home, Im sat for most of my time so I don't notice so much. Its only when you are forced to do something that you realise how hard it is to function at all. My shoulders have really suffered as a consequence of using a self propel chair and my right arm keeps going numb and limp. I really should go and get a better chair but I'm reluctant to buy one because I don't want to have one at all. I can't get my head around that at the moment.

My brother has been working on my website this week so I'm hoping to have it up and running really soon. If anyone here in the uk would like me to add links or advertise fundraising events please let me know. E:mail helpmeminx@yahoo.co.uk