I came out of hospital just over a week ago. Seems like ages ago now! Been so busy :) When I left, my lung function had improved but still isn't back to where it was this time last year (70%). When I went into hosp it was around 44% and when I came out I managed to get it up to 59%. It's scary seeing it decline year after year and I can feel the effect it's having on my body. I get so exhausted so easily now. It's also worrying to know that if my lung function drops another 10% and stays that low I won't be able to have children naturally at all. Of course there are always other options, which we may have to turn to anyway, but I want to try and keep every percent of my lungs!
Good news, I finally had my meeting with the surgeon regarding the PEG (the tube to help me gain weight by feeding me extra calories at night). Of course the appointment wasn't without it's glitches as always, but I was so glad to actually get the process started. I asked all my questions and feel confident in having it. I just need to choose which type of PEG I want now. There are a few options: if I eventually want to have a "button" then I need to have a wider tube fitted for now. The button is less obvious as it sits close to my skin, but it has a higher risk of falling out because it is only secured by water filled balloon on the inside of my stomach. The other option is a thiner tube which is less likely to fall out but it means that I won't have the option to have a button fitted in the future. So need to think this through.
Since being out of hospital, Alex and I have still been trying to find somewhere to live and I have been doing a lot of dog grooming, which I love! Been seeing friends and trying to fit in as much as I can while I'm well. Just need to make sure I don't overdo it and make myself ill again!
Thursday, 30 January 2014
Friday, 10 January 2014
What happened next...
So in my last blog, I mentioned I was about to come up to Brompton to get some home IVs. Well my lung function was down a lot- only 44%- so I had to stay in. Alex and my mum came up for New Years Eve, but it wasn't the same lol!
The plan was to start the IVs off here and then continue at home as we were moving house (would have been today), so I obviously needed to be out to help with the move. Then disaster struck again and the house fell through 2 days ago :( The current tenants are refusing to move out and want the estate agents to take them to court. However, it meant that I could continue my IVs here instead.
I hadn't improved at all after about a week and a half, so last night the docs changed my IV to a new one. I can't remember what it is called, but I know it has the word "tiger" in it, so I will call it Tiger IV :) Hopefully this one does the trick. It has a very strong nauseating side effect, so much so that they have to give you an anti-sickness that they use for patients having high dose chemo! Should all be worth it in the end though.
Alex is frantically trying to find us a place to live, there's not much on the market within our budget at the moment.
Not the greatest start to the year BUT... everything happens for a reason I suppose!
That's the depressing health stuff done... other than that... Barney and the kittens are still happy as Larry- I went home for a few hours last night and saw them, was so great. And I saw some of my friends down the pub :D I've been really lucky as I've had so many people visit me this admission! Definitely makes it easier being in here. And I've been phone pranking Alex's mum and nan haha. It's so funny! Passes the time during the day ;)
The plan was to start the IVs off here and then continue at home as we were moving house (would have been today), so I obviously needed to be out to help with the move. Then disaster struck again and the house fell through 2 days ago :( The current tenants are refusing to move out and want the estate agents to take them to court. However, it meant that I could continue my IVs here instead.
I hadn't improved at all after about a week and a half, so last night the docs changed my IV to a new one. I can't remember what it is called, but I know it has the word "tiger" in it, so I will call it Tiger IV :) Hopefully this one does the trick. It has a very strong nauseating side effect, so much so that they have to give you an anti-sickness that they use for patients having high dose chemo! Should all be worth it in the end though.
Alex is frantically trying to find us a place to live, there's not much on the market within our budget at the moment.
Not the greatest start to the year BUT... everything happens for a reason I suppose!
That's the depressing health stuff done... other than that... Barney and the kittens are still happy as Larry- I went home for a few hours last night and saw them, was so great. And I saw some of my friends down the pub :D I've been really lucky as I've had so many people visit me this admission! Definitely makes it easier being in here. And I've been phone pranking Alex's mum and nan haha. It's so funny! Passes the time during the day ;)
Monday, 30 December 2013
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.
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
See you again one day Paul, but until then breathe easy and rest in painless peace friend xxx
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
Friday, 13 December 2013
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.
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 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.
Monday, 4 November 2013
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.
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.
Sunday, 3 November 2013
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
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
Sunday, 27 October 2013
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
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
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