Rest In Peace Paul x

It's been a weird few weeks, some highs and some extreme lows. Firstly, the lowest low was hearing that my friend Paul had passed away on Christmas morning. I knew Paul from the Brompton and he was my closest friend with CF. We only knew each other for a few years but he was so funny and unlike anyone else I'd ever met with CF. Sadly, he had had a rough few months battling against this illness and it was eventually decided that he would go onto the transplant list. The last time I spoke to him he told me he was having the transplant talks with the doctors, so I'm not sure how far along the process he was before he passed away. He may not have made it onto the list, but even so, it makes me think of all the other thousands of people waiting for a transplant of any kind.

     See you again one day Paul, but until then breathe easy and rest in painless peace friend xxx

Make it your New Years resolution to sign up for organ donation, if you agree with it! If you needed a new heart, kidney, lung... would you take one? If you would, then you should give one when you're gone. It takes 2 minutes to sign up and you could save up to 7 lives!

Here's a link of an interview on Daybreak this morning, of two girls who have had lung transplants. You may recognise one of them, Kirstie, who made a documentary a year or two ago.

http://www.itv.com/daybreak/health/two-friends-saved-by-lung-transplant/#.UsE0roT--qg.facebook

This is the organ donation link, for if you want to sign up: 

http://www.organdonation.nhs.uk/

The highs of the last few weeks were obviously CHRISTMAS, seeing family and friends! I love this time of the year and all the merriment that goes with it :P I went to Winter Wonderland with some of my friends, a few parties and get-togethers and had lots of yummy food!

My health has declined a lot and I've just literally got off the phone with Alan at the hospital and I will be going up later today to start home IVs :) Bed rest and munch for me for the next few weeks. Then early Jan, Alex and I will be moving again- getting fed up of moving around!

So fingers crossed for a smooth and quick-ish run at the hospital today. Speak soon xxx

Christmas Elf!

I came out of hospital on 13th Nov so I could be a Christmas elf at Chessington Garden Centre :) I probably needed a few more weeks of IVs, but I was insistent that I'd be an elf!

The elfing is for about 6 weeks, but just 2 weeks in my body was already struggling. I was hoping that my health in general was getting better and more stable; I was using this little elfing stint to see if I could handle maybe a part time job in the future. But it seems that my body just won't let me do that at the moment :( The elfing is quite a low energy job too, the managers kindly give me the jobs where I can sit down all day, but it's still taking it's toll. I feel so gutted! I've cut down my hours now, so fingers crossed I can complete the last few weeks without getting too much worse.

My sister Abi, Alex and me with Santa- who strangely enough is one of my friend from Brompton's dad. Small world!

Barney had his first birthday on Dec 2nd, and we had a party for him! Was so funny and I made him and his doggie cousins a cake.

The financial stresses of being "disabled"

I have never written about the side of CF which includes help/benefits. I think because I'm ashamed of receiving them as you hear so many stories in the news of benefit scroungers and it gives disabled people a bad name- especially if you look "normal" and don't look as though you are ill from the outside. But the truth is, I could never work a typical 9-5 job. I've tried working in the past, but it was basically just a waste of the company's time and money hiring me as there was so little I could do and I was so often too unwell to even make it into work.

I then was advised to claim the benefits that I am entitled to: DLA (disability living allowance) and ESA (employment and support allowance). Alex was also advised to claim for carers allowance as he was looking after me for over a certain amount of hours per week. With this, Alex and I were able to start living independently! We had our own flat, could pay our bills and could even afford to save to go on holiday.

Now, a few years down the line, it seems all was too good to be true. Everything in our independent lives has crumbled in the last few months. It's a nightmare. Today they have just cut me off ESA as Alex and I are married now, and apparently that changes everything. We have no where to live of our own and so have moved back to my parents.

We don't own much as it is, but our most precious things are our animals (one dog, 2 kittens) and we just don't want to have to rehome them because we can't afford to look after them. It seems that I'm being punished for having CF and for trying to live independently and "normally". Does the government really want me and my husband to have to live with my parents forever? To have them pay for our meals and keep a roof over our heads, instead of saving their money for themselves? All because I have an incurable illness (that I would happily exchange for a healthy body in a flash), which means I can't hold down a full time job and need help from someone to get around, dress, wash, administer meds etc when I'm ill?

Is making sure the bankers of this country get their bonuses really more important than giving people the chance to LIVE as opposed to existing? It's not just me and my problems, there are millions of people who aren't given this chance: people on low income, other people with disabilities, people caring for relatives, single parents.... Personally, I think this government have their priorities mixed up and I don't think lower class citizens of this country will want to stand for this much longer.

Day 7 update

So I've been in hospital a week now and even though I have a cold (side effect of flu spray) I'm starting to feel better- not coughing as much. But this week has had its set backs! I was told by the docs that I might not be getting my PEG this admission now as they want me to be able to do blood sugar testing by myself before having the PEG put in. As well as have some psychology appointments to make sure I am mentally ready for the PEG (even though I have been asking for one for 2 years!!). The dietician and I are not impressed. This always seems to happen here though; they "promise" one thing, then back out at the last minute. Gets your hopes up for no reason and makes trusting the team very hard. I understand these factors are important before having one put in, but they should have said so months, or even years, ago so that I could work on them and be ready by now.

I've been working on my blood sugar monitoring. They monitor bloods to make sure the sugar levels aren't too high. Apparently though, mine are coming in too low. I've told the nurses this is probably because I'm in hosp and don't have much of an appetite in here, as I'm confined to this room and the en suite and can't use up much energy compared to if I were at home living my normal life. Somehow though, I don't think the docs are going to accept that theory tomorrow lol....

Being in here reminds me how grateful and lucky I am to be able to do home IVs. It's so difficult to sleep, eat and remain positive in here. It's not the nurses or cooking staff's fault or anything, it's just not home- and I'm very much a home bird!

Thankfully, I was able to come home for a few hours this weekend and saw my family, Al's family and my Barney bear and the kittens Ethel and Arthur. Was so nice! Picked up my spirits :)

Oh, and if anyone is interested in the numbers and figures of my sats, weight, lung function etc they aree....
Lung function last week: FEV1 59% and FVC 90%
CRP levels: beginning of last week- 90; end of last week- 52
O2 levels: 93-96%
Weight: 45kg

Long time no see!

It's been a year and 3 months since I was last admitted to hospital! I've survived on home IVs until now, but it's time to come in for good physio and for someone else to take over the meds. Not sure what my lung function is at the moment, will probably do a test tomorrow as well as have bloods done to check my crp (infection level). My weight today was 45.4kg, which is more than I thought thankfully. I'm still hoping that I will have my PEG fitted during this admission, so I can finally put on weight and look normal!

It's been strangley nice coming back here, seeing the same nurses is reassuring as they already know me. There is a new microwave though ;) Will be obviously sad being away from my friends, family and animals; but I'm hoping to come home a few times as I have some appointments I need to get to back home.

Luckily, I have managed to go to most of my friend's birthdays before my admission. It's always the way that when you have an admission coming up, there is suddenly loadssss going on! Sod's law.

Anyway, for now I'm stuck in these 4 walls watching Lady Gaga crawl across the Xfactor stage in her undies... Ta ta xxx

life life life

Today I had a follow up appointment at Brompton with Barbara (the doctor I usually see when I go up for IV check ups) and a trial for a new thing called Tobi Podhaler. I was asked to go up for 1pm to see Barbs before my trial at 2.15. I expect to wait a while to be seen when I'm up there as there are lots of patients in the hospital. But this time was unusually long. I hadn't seen Barbara by the time my trial came round, so did that first. I currently take Tobi through a nebuliser, but this is a new invention that allows me to take the Tobi medication through an inhaler instead. The whole process is quicker, more convenient, needs less maintenance of equipment and doesn't involve a big nebuliser. Overall, many bonuses! The trial was to make sure I didn't have any reactions or that my airways didn't tighten once I'd had it. Thankfully I passed it and now have a much quicker way of taking that medication :D

So then I went to wait again for Barbara and the nurses kept bleeping her. By this time it was about 3.30. Finally at about ten to 4, a nurse informed me that Barbara wasn't even in! Goodness knows why it had taken them soooooooooooo long to find this out. I was a bit annoyed that I'd wasted so much of my day waiting for someone who was never going to turn up. The nurses told me though, that another doc would see me quickly as I'd been up there most the day lol.

I saw a nice doc called Callum and explained that my lung function has still not improved, neither have my symptoms and he went to ask the head doc of the hospital what we should do. A little later he came back to say that I should stop my current IVs as they are clearly not doing anything and I will be put on the non-urgent list to come into hosp for an admission for IVs and really good physio.

Pretty gutted to be honest that after 3 weeks of IVs plus oral tabs that my lung function hasn't budged even 1% :( I'm moving house in a couple of weeks, which will be stressful enough. Now I will probably be ill for it and then once I've moved in I'll be straight back out the door to stay at hosp for 2 weeks. But what can you do 'ey!?! That's life at the end of the day. Just hope I will have the energy and patience to get through it all :/

2 weeks into IVs

On Monday I went back up to Brompton for an appointment and to see if I should stop IVs, as the two week course had ended. The good news was that thanks to the steroids I was on, I'd put on 1kg! :D So currently around 45.5kg. Other than that, there had been literally no change to my lung function or sats :( So I'm trying another week of the same IVs. I think I probably need to change IVs really, but might do that next week if there is no improvement again.

Spoke to the dietician about having a PEG put in and I now know more about it. I'm also emailing a woman who has had a few PEGs, so she is telling me her experiences and answering all my questions :) She's been very helpful! The dietician thought it would be a very good idea to have a PEG put in to help me gain and maintain weight, and they are hoping to put one in before Christmas.

Next time I blog, will probably be when I'm 21! I'm getting so old lol x