Very Scary Times......

beanielou

Could you not think about a wee bit of volunteering in an area that interests you? xx

beanielou

Hope you are ok Emz xx

Emzilla

beanielou wrote: »

Hope you are ok Emz xx

I'm fine thanks Lou

Emz xx

beanielou

Emzilla wrote: »

I'm fine thanks Lou

Emz xx

Good xx

Emzilla

Hey everyone

Sorry I've been gone for a few weeks. Had a lot to deal with. It was my birthday, so that was nice, but I had the overnight assessment at Harefield looming over me, so that took the shine off it a bit. I was really dreading it and I couldn't really think of anything else or see past it for a while. I was just going through the motions really waiting for the day to come.

So I went there on Wednesday and Thursday last week. Only had to stay for 1 night thankfully (had some people saying it was overnight and others saying 3-4 days, so I had no idea what to expect). It wasn't quite as bad as I thought, but it was pretty intense. I had a LOT of tests done and nothing came out really bad (as far as I'm aware). In actual fact my lung function has gone up again to 30% (haven't hit the dizzy heights of 30% in years!!) and my walking test was brilliant. I did a 6 minute walk test on 4 litres of oxygen and my O2 levels didn't drop below 96 the whole time. Plus my O2 levels were around 97 at rest for my whole stay.

They have a meeting once a week to discuss potential transplant patients, so I will be discussed this Thursday. They will then let me know what they advise and if I'm suitable to go on the list. I have pretty much decided that I don't want to go on the list just yet though. My health has been steadily improving this year and I feel really good at the moment, even though I'm now due some top-up IVs.

To be honest, transplant comes with a lot of problems, and I think I am better trying to get the most out of my current lungs before swapping them with some new ones that will come with a shelf life (they aim for them to last around 10 years, but I know a lot of patients that have run into problems after 2-3 years). Plus, with all the new CF drugs that they are trialling at the moment, you never know in the future!! There is a triple therapy drug that they are trialling right now which is supposed to be amazing. It has been adding 10-20% lung function on to people, which is life-changing. If I have new lungs, then that won't benefit me.

So I'm going to ask if I can go on their 'watch and wait' list, which means that I have to go there once every 6 months for a check-up, but if I run into problems in the mean time, I can go straight on the list, as I've already had all the assessments done. I'm not sure how my doctors will react when I tell them this, but it is my body and my choice.

In the meantime, I have joined a gym with my OH. I have never been great with exercise, so I don't actually know how my lungs will react to getting some regular cardio. My aim is to get my lung function up to 35% and my eventual aim is to get myself off the oxygen. I know people that have been put on the list in the past and have worked so hard on their fitness that they have been able to come off it again.

When I go to the hospital next, I'm going to ask them to recheck my oxygen levels, as my sats show that I could come down a level when walking and resting. I'm also going to ask if I can go back to work. I really miss it and just want to see if I can do a 3 hour shift, just once a week to start off with. After all, if I'm not going on the list just yet, I can't stay off work forever.

Other little bits of news, I've got a couple more PPI payments - I think that will be it now though. They were for just under £2k together, so I'm really pleased I finally got round to doing it. The money I've received has helped so much with not being at work - it just took the pressure of earning extra money off me completely.

That said, I do want to try and start earning again and trying to save money where we can. We're in a good place financially at the moment. I've been paying all the bills on time and it's such a good feeling!! I'm going to start my £1,000 aim again from today (didn't really get off the ground last time).

Emz xx

Silver_Queen

Sounds like things are on the up for you, glad to hear it.

My mum had an organ transplant 15 years ago and is still going strong (touch wood!)

Good to hear about the PPI payments and hooray for improved lung function!

beanielou

Great news on better lung function.
As you rightly say it is your body & your choice.
Take care xx

Emzilla

Silver_Queen wrote: »

Sounds like things are on the up for you, glad to hear it.

My mum had an organ transplant 15 years ago and is still going strong (touch wood!)

Good to hear about the PPI payments and hooray for improved lung function!

Thank you

I'm glad that your mum is still going strong . I think it depends on the organ - I know that lungs don't last as long as some other organs, but they can last for that long, I've just heard more negative cases in the CF community than positive ones.

Emz xx

Emzilla

beanielou wrote: »

Great news on better lung function.
As you rightly say it is your body & your choice.
Take care xx

Thanks Lou

Emz xx

Emzilla

So we got our new sofa today. We ordered it a while ago (OH got it with some PPI money). It's from M&S and we got 40% off and then my staff discount off on top of that. It's a lovely sofa, problem is it's massive!! It's currently taking up so much room. I'm hoping we can shift some more stuff around when OH gets home tonight to fit it in better.

It's been pretty good on the money making front since I last posted. I've done just over £8 worth of Prolific surveys and about £6 worth on Panelbase.

I've also had a phone call from a mystery shopping company and have a last minute home delivery job where I'll get £35 worth of free shopping

Emz xx