Sunday, 22 June 2014

Lets get back to how I was!

So it's been just over a week since I came out of hospital following the worst admission of my life! I've been working hard with my physio and eating but I know I'm still no where near well. I've been sleeping so much. I wake up thinking when the next time I can go to bed is!

I went to the hospital on Thursday to start home IVs. I think the docs knew that the admission was a disaster, so they agreed for me do it myself at home. By some pure miracle I'd put on weight! I'm now 46.2kg from 45.6 when I left. Also, my lung function had only dropped 1% to 49%, which meant even though my physio hadn't made me any better, it had kept me stable thankfully :) My oxygen levels were the lowest they've ever been at 91%. Hopefully with the IVs all these things should improve again and I can re-start all the effort to get my weight back up. This should also be easier as I now start to wean myself off the laxatives :)

It's been a couple of days now since I started the home IVs. I think already I feel an improvement in my chest! Weight wise, probably not as I've been feeling very sick and throwing up a lot. If it carries on I'll ask for some anti-sickness tablets. Overall, things seem to be going in the right direction!

Other than health stuff, it's nearly Alex's 21st birthday so I'm busy planning his party with his mum and sorting out his gifts. Also seeing friends who have broken up from uni for the year- I'm seeing that new film The Fault in our Stars on Tuesday. I've heard that it's quite relatable for people with CF. Me and my friend Ashley will be taking a box of tissues ;)

I'm hoping in a few weeks time I can be back where I was about a month ago- feeling amazing and looking forward to summer! xo

Tuesday, 10 June 2014

I've escaped!

After 2 weeks and one day I'd had ENOUGH! Enough of the intense, constant heat; enough of loosing all the weight I'd struggled to put on; enough of waiting for answers from the doctors. Overall I have probably come out in worse health than I went in lol, BUT I have managed to shift the Serratia again, which was the reason for going in.

My weight has gone from 48.6kg down to 45kg, lung function from 57% and 91% down to 50% and 89%. My stomach blockage went after a week and then came back, but not so severely so I have gone home on weaker laxatives and can wean off them as I get healthier. I think the main causes of the blockage are the hot hot hot hospital room and lack of mobility. The doctors wanted me to stay in longer to try and get my lung function up but I just needed to get out of there. I needed FRESH air and a cooler environment and more than just a room and bathroom to walk around in. I honestly think that I will put on weight quicker and my lungs will get better if I'm at home getting back into a good routine. The doctors doubted that, so I have an appointment next week to see hoe I'm getting on- pressure much haha ;)

So now I am FREEEEE!!!! I've had a good old McDonalds, a great night's sleep, walked up and down the stairs a few times and walked my Barney Bear (well Alex pushed me in the chair but still!). I'm still quite weak and just taking things slowly until I've built up my strength and stamina again, but I'm loving it!!!

Monday, 2 June 2014

A spot of bother

If you have me on Facebook, you may have read my status yesterday about the pain I'd been getting. Basically this is what's happened...

Saturday night I was feeling a bit sick and bloated. I'd put the sickness down to the IVs I'm on. Then I started to get a bad stomach ache, which I thought might just be period pains. 2 hours later and then pain hadn't eased at all, just got worse. So the on-call doctor came to see me and prescribed some laxatives as he thought it could be trapped gas or something.

I only managed to get about 3 or 4 hours of sleep that night as I was in such agonising pain. I just couldn't get comfortable. In the morning Alex came up early and another doctor came to see me. I had an x-ray to see what was going on. Turned out my bowel was completely blocked and nothing was moving, leading to my stomach being overstretched with everything I'd eaten and drank the last day or so and being very swollen. I had about 6 laxative drinks and then got prepped for a CT scan.

As it was Sunday they didn't have any normal hospital transport so I had to get an ambulance to drive me literally to the next road. They won't let you just walk or get a wheelchair. But they gave me gas and air and it was so much fun! :D

All high from the gas and air haha

CT scan showed that the 6 laxative drinks were starting to take effect, which was a great sign. When I came back I had to have another sort of laxative. This time the poor nurse had to pour it in my actual bum! It was just a horrendous experience. Thankfully it worked and I don't think I'm going to need another one.

So a million laxatives inside me, the docs then decide to try and drain my stomach of the food, drink and any air that's in it. This was to try and make me more comfortable. They used an NG tube, which goes through my nose, down my throat and into my stomach. I'd never had one before so was nervous. I had to snort some gel which numbed my nose and throat and then once the nurses pushed the tube up I had to swallow loads of water so that it went into my stomach and not my lungs.

It went in and they attached a bag to collect anything that came out. The feeling of the tube at the back of my throat kept making me gag.

NG tube- ignore my face, I was exhausted lol

So Sunday night I had to wear a giant nappy, just incase I couldn't control myself or get to the toilet in time. I went to the loo loads, which was a good sign that everything was working. The NG tube wasn't really doing much though. The bag they attached was still empty so they took it out (YAY!)

The nappy- surprisingly comfy!

Today, Monday, I've just had another load of laxatives and an x-ray. I'm hoping that it all looks ok and that I'll be able to start eating again. I haven't eaten since Saturday night, starving!

So that's that! Pretty long ramble, but I know my family and some of my friends will want to know exactly what's happened, so now I don't have to explain it a hundred times ;)

Since being in hospital, I also started a Vlog- like a video blog/diary. It is on Youtube and I have been sharing it with my family each day. If you're interested in watching it, my channel is:

Feel free to subscribe :) I'm still kind of new to it all so bear with me haha :P I upload a new vid every day. It shows me living my life with CF, the highs and the lows; the complications and the enjoyment of doing things I want to do with my life. Hope you enjoy them.

Thank you to everyone who wished me well the last few days, it meant a lot and was lovely to read your comments! Lots of love, Jo xxx