Very Scary Times......

Emzilla

Hi everyone

I've been thinking about whether to start a new diary for a little while now, but decided it would be good to have somewhere to write about everything that's happening at the moment. I've been on these boards for a long time and have got friends on here, even if I haven't been posting that regularly this past year.

So, as some people will know, I've got Cystic Fibrosis. I've had a bit of a bad year health wise and have been on oxygen since May. I became ill around the middle of October and was admitted to the high dependency unit in hospital.

Things got very bad, so bad that they had "the conversation" with me about the very real possibility that I wouldn't make it. It looked very bleak for a day or so, but I gradually improved. Basically, my lungs were struggling to get rid of the Co2 and they were slowly getting poisoned. I was on a Bipap machine (to help me breathe) pretty much 24/7, with just 30 minutes off it so I could eat and drink. They eventually weaned me off the machine during the day and I was just using it at night.

I spent about 1.5 weeks on HDU and then another week on my usual ward before they let me go home. It has been agreed that I need a lung transplant as my lungs just aren't coping as well as they were. I'm on quite a bit of oxygen now, which is still allowing me to get out and about, and I'm using the Bipap at night, to try and avoid getting into that state again. I've been for my first assessment for the transplant at Harefield in London, and I'm waiting for my overnight assessment appointment, which will be at some point in January. After that, I will hopefully be on the transplant waiting list.

It's all very very scary, but I'm just glad that I'm still here at the moment!! The name of the game now is just keeping myself as healthy as possible so that I can get my transplant and some shiny new lungs!!

I've been off sick from work for just over a month, and I suspect I will be off sick until I've had my transplant and recovered from it. Not great for the bank account, but my health is more important than money. I'm on SSP right now, which is better than nothing.

Now that I'm out of hospital, I'm going to try and do some extra bits online to bring in a few pennies. Don't worry though!! I won't do too much and it'll just be things online when I'm just watching TV or doing my nebulisers. My health is my ultimate priority and I won't do anything stupid to jeopardise it.

Emz xx

Choccygirl123

Hi smoz

Sorry to hear you've not been well, sounds like a really scary time. Hopefully you'll have your transport soon.

I've been off sick since August and know how hard being on ssp is. I've been trying to stretch our money as far as I can for the things we have to pay. I've cancelled sky, swapped my car insurance, shopped around for breakdown and cut my phone & broadband bills. Shopping around has saved us £85 a month which has massively helped.

I've been surveying like mad and have started the sealed pot challenge for next Christmas.

I've been selling bits and bibs around the house on eBay and Facebook. I always use Quidco the cashback as it does add up especially when swapping suppliers etc.

Take it easy and look after yourself x

beanielou

Hello Emz.
So sorry to read your latest news.
As you say your priority is you & your health.
Nothing else comes even close.
Take care of you Emz & hope that BF is taking care of you too xxx

Emzilla

Choccygirl123 wrote: »

Hi smoz

Sorry to hear you've not been well, sounds like a really scary time. Hopefully you'll have your transport soon.

I've been off sick since August and know how hard being on ssp is. I've been trying to stretch our money as far as I can for the things we have to pay. I've cancelled sky, swapped my car insurance, shopped around for breakdown and cut my phone & broadband bills. Shopping around has saved us £85 a month which has massively helped.

I've been surveying like mad and have started the sealed pot challenge for next Christmas.

I've been selling bits and bibs around the house on eBay and Facebook. I always use Quidco the cashback as it does add up especially when swapping suppliers etc.

Take it easy and look after yourself x

Sorry you've been off sick as well. Sounds like you have made some great savings.

I'm lucky that my OH earns a good wage, and I'm still bringing in £700 a month with my SSP and PIP, so it's not that bad. I just want to feel like I'm contributing a bit more.

I was thinking I might go back to entering competitions. It's something I can dip in and out of when I've got the time/feel up to it, and it might result in some nice treats for me and OH. I have been quite lucky with comps in the past.

Emz xx

Emzilla

beanielou wrote: »

Hello Emz.
So sorry to read your latest news.
As you say your priority is you & your health.
Nothing else comes even close.
Take care of you Emz & hope that BF is taking care of you too xxx

Thanks Lou :A

My OH has been amazing. I think it really hit home that he could have lost me. My sister has been a massive help too. They've already figured out who can do what when I'm having my transplant, as that takes around 3 months to recover from (although not in hospital all that time).

Emz xx

beanielou

Glad that your OH has been amazing

Choccygirl123

Hi emz

Apologies for the autocorrect on my phone on my first post. My phone has its own mind . It's good news you've got that support network of your oh and family. You sound like you've given them all a huge shock. It's good you've got pip as well as ssp so one less thing to worry about.

Competitions are a great way to keep busy. Are you on Facebook? Our local radio does a competition every day and I've won a few times including tickets to see the battle proms.

Are you well to cook or bake? I get my hubby to buy a random fruit or food and the challenge is for me to make into something yummy. I've mastered cookies at last and only take minutes. Let me know if you fancy the recipe. It's like ready steady cook on a wheelchair.:o

jwil

Lovely to hear from you again Emz.

Sorry to hear things have been bad, I'm glad your OH and family are looking after you. Take care of yourself, and winning a few treats would be lovely xx

Emzilla

Choccygirl123 wrote: »

Hi emz

Apologies for the autocorrect on my phone on my first post. My phone has its own mind . It's good news you've got that support network of your oh and family. You sound like you've given them all a huge shock. It's good you've got pip as well as ssp so one less thing to worry about.

Competitions are a great way to keep busy. Are you on Facebook? Our local radio does a competition every day and I've won a few times including tickets to see the battle proms.

Are you well to cook or bake? I get my hubby to buy a random fruit or food and the challenge is for me to make into something yummy. I've mastered cookies at last and only take minutes. Let me know if you fancy the recipe. It's like ready steady cook on a wheelchair.:o

Don't worry, I knew what you meant!! My boyfriend is terrible for sending texts that make no sense, I'm always having to work out what he means

I've won a few things on the radio in the past. I might start listening in the mornings to try and win some local tickets, even if I can't go, my niece and nephew will love days out

I would love to start baking. I've always wanted to be good at cooking. Unfortunately I'm not allowed to use the oven/hob that much as I'm on oxygen all the time. Not a good combination. Sadly I can't do the ironing either :rotfl:

Emz xx

Emzilla

jwil wrote: »

Lovely to hear from you again Emz.

Sorry to hear things have been bad, I'm glad your OH and family are looking after you. Take care of yourself, and winning a few treats would be lovely xx

Thanks Jwil :A

I'm definitely going to give comping another go. I've entered a few things on and off over the past year (and had some good wins), but it has all been fits and starts, so prizes haven't been consistent.

Let's see how long it takes me to bag my first prize

Emz xx

Emzilla

I feel like today's going to be a good day. I had a great sleep last night. It has taken me a while to get used to the Bipap machine and sleeping in the mask, but I'm getting there. It's a lot better at home than in the hospital anyway.

I've done all my meds for the morning and the oxygen company have already been to change my portable concentrator (it wasn't charging). I even managed to get a trolley from the delivery guy so I won't have to haul it in and out of other people's houses (it's pretty heavy). So I've got a free day now. OH is away in Poland with some workmates at the moment (he wasn't going to go, but I persuaded him - I might not be able to go away anymore, but I don't want him to miss out too). He's back on Saturday, but I've let the house get a bit messy

I want to try and tidy up a bit and get a wash done. I've also got a book that my sister got out of the library for me (when I was in hospital) that I need to read. Not even started it yet, so would like to get that underway today.

Emz xx