I haven't said too much lately on my weight gain, because prior to this past week or so, I had hit a bit of a wall and hadn't gained much weight, I was starting to get a little down about the lack of gaining weight that was going on and at times I thought I'm never going to get there, but of course I still soldiered on and worked my little butt off and here is what has happened in the last 10 or so days.
I started Megace 10 days ago and the biggest impact it has made is my meal portion size - I would've usually had a half-hearted attempt at a 'meal' but now my dinner is probably double what I would've previously had, then I'm having seconds, even thirds! Which for me was unheard of!
So it has made a huge difference on how much I eat and I've been told it can take a while to see the full benefit, so if my appetite continues to increase I'll be eating loads soon :D
I've also been using Pro-Cal powder in all my food again mainly started this about 10 days ago too, it's a flavourless supplement which can be mixed into all types of food. I've been having it in things like lasagne, korma, cupcakes, hot chocolate etc. I've been really working hard to incorporate it into my meals, one sachet is 100 calories and I'm allowed 5 sachets a day which is obviously an extra 500 calories - So I'm really working hard with this, or should I say Josh and Mum are :) lots of big meals for me!
Anyway, here is the bit you all want to read...........
10 days ago I weighed 37.7kgs and today I'm almost 40kgs, which is about a 4.5 pound gain!! In 10 days!! Wooooooooooooooooooooooooooooooooooooooooo.
I'm shocked that Papworth were so reluctant to give me either of these things, they don't give Megace out to their patients and when we asked about the powder they said 'they prefer not to give it out because it doesn't add too many calories' ... Well I think I've proved that every little helps and anything that could potentially help my weight gain is worth trying!
So here's to me being a whale very soon...
And if I don't become a whale, at least I might get on the transplant list?
:)
xxx
Monday, 26 September 2011
Thursday, 22 September 2011
IV's, Side Effects and A Potential CF Cure Update
I went to clinic yesterday which I had brought forward due to how unwell I was feeling, they pretty much could tell right away I wasn't well as I could say one word, then had to take a breath, say another word, take a breath, literally every word was exhausting, I also struggled walking from my clinic room to the weighing area which is a probably a 20 second walk, lol. Took me about 5 minutes! Terrible. Also my wheezing was very loud, with every breath came a high pitched crackle which might I add is soooo annoying, imagine trying to sleep at night and all you can hear is this wheeze, grrrr. Anyway, I didn't have to say much, my numbers spoke for themselves and they mentioned IV's immediately. I didn't want to stay in hospital because my Mum is on holiday this week and I hate being an inpatient without my Mum there to visit/support me I do have Josh and my Nanny and Grandad who visit often. But I said I'd like home IV's then if I don't feel that I'm getting the full benefit from them at home, I have to go back to clinic on day 7 and day 14 of IV's, so I can change my mind, or perhaps have a 3-4 week course of IV's to really kick this awful infection that has a nasty grip on my failing lungs.
Now what some people might not know, is that with IV's comes nasty side-effects, it has become apparent lately that the sicker I am, the harder the side effects hit me. When I wasn't this bad, IV's used to make me feel a bit cold-like on the first few days, then I'd pick up. But this time, for example, I've been sick 4 times since my first dose Wednesday afternoon (it's now Thursday evening) I had a terrible migraine, which left me with a pressure-headache which in turn caused a nasty nose bleed (something that's only happened to me once before) I've felt very lethargic, dizzy, faint and I don't have much co-ordination so last night I walked into a wall, yay. It's very difficult giving yourself something knowing exactly how bad it's going to make you feel, but I'm just trying to focus on the good - unfortunately I'm now so bad where IV's don't make me 'better' but they do pick me up a bit, my chest calms down a bit more, my lung function rarely increases but my infection levels do usually drop a bit. So there are some benefits in amongst the evil-ness that is IV antibiotics! There was one good thing which was that I had my PICC in still so didn't have to worry about needing a line put in my arm, which usually causes me stress to the point I delay IV's which is never a good thing when you're this sick.
I did receive some good news which was that I had gained weight! I started the Megace tablet a week before clinic and my appetite has definitely increased and the weight gain proved it! Always good news, it keeps the doctors/dieticians happy and it makes me feel my hard work is still paying off, however big or small the increase, it's still a gain, not a loss and not sustained - It's better! Yay :)
I'd like to finish on a subject which is obviously quite close to my heart, it's something called 'Gene Therapy' which could potentially cure Cystic Fibrosis. I wouldn't have any benefit from it because the point of gene therapy is to stop you getting any worse but because my lungs are so damaged and scarred I would still need a transplant and that is my only option. However, I have many friends with CF who don't deserve to get to this stage and if there is something that could end the suffering and stop new babies being born with this awful disease, then I'm going to do my best to help it.
Millions of pounds have already gone into funding this cure, but they are £6,000,000 away from where they need to be and the researchers have been given 6 weeks to find the money or the whole thing will be scrapped, ending all hope for people with CF who have put so much faith in the fact there is a potential cure out there.
It has been trialled on people so it is quite far into the research, but without the money, there will be no cure, which means my friends, my fellow CF sufferers and the 5 new babies are born with CF each week, well this could save their lives.
If you have any money, literally pennies, any contribution towards the target would help massively. So if you would like to donate, please visit the link below and I am thankful on behalf of the entire CF population if you choose to do so.
Cystic Fibrosis - Gene Therapy Appeal
Thank you for reading, I apologise this blog has been quite long but I do tend to ramble on!
xxx
Now what some people might not know, is that with IV's comes nasty side-effects, it has become apparent lately that the sicker I am, the harder the side effects hit me. When I wasn't this bad, IV's used to make me feel a bit cold-like on the first few days, then I'd pick up. But this time, for example, I've been sick 4 times since my first dose Wednesday afternoon (it's now Thursday evening) I had a terrible migraine, which left me with a pressure-headache which in turn caused a nasty nose bleed (something that's only happened to me once before) I've felt very lethargic, dizzy, faint and I don't have much co-ordination so last night I walked into a wall, yay. It's very difficult giving yourself something knowing exactly how bad it's going to make you feel, but I'm just trying to focus on the good - unfortunately I'm now so bad where IV's don't make me 'better' but they do pick me up a bit, my chest calms down a bit more, my lung function rarely increases but my infection levels do usually drop a bit. So there are some benefits in amongst the evil-ness that is IV antibiotics! There was one good thing which was that I had my PICC in still so didn't have to worry about needing a line put in my arm, which usually causes me stress to the point I delay IV's which is never a good thing when you're this sick.
I did receive some good news which was that I had gained weight! I started the Megace tablet a week before clinic and my appetite has definitely increased and the weight gain proved it! Always good news, it keeps the doctors/dieticians happy and it makes me feel my hard work is still paying off, however big or small the increase, it's still a gain, not a loss and not sustained - It's better! Yay :)
I'd like to finish on a subject which is obviously quite close to my heart, it's something called 'Gene Therapy' which could potentially cure Cystic Fibrosis. I wouldn't have any benefit from it because the point of gene therapy is to stop you getting any worse but because my lungs are so damaged and scarred I would still need a transplant and that is my only option. However, I have many friends with CF who don't deserve to get to this stage and if there is something that could end the suffering and stop new babies being born with this awful disease, then I'm going to do my best to help it.
Millions of pounds have already gone into funding this cure, but they are £6,000,000 away from where they need to be and the researchers have been given 6 weeks to find the money or the whole thing will be scrapped, ending all hope for people with CF who have put so much faith in the fact there is a potential cure out there.
It has been trialled on people so it is quite far into the research, but without the money, there will be no cure, which means my friends, my fellow CF sufferers and the 5 new babies are born with CF each week, well this could save their lives.
If you have any money, literally pennies, any contribution towards the target would help massively. So if you would like to donate, please visit the link below and I am thankful on behalf of the entire CF population if you choose to do so.
Cystic Fibrosis - Gene Therapy Appeal
Thank you for reading, I apologise this blog has been quite long but I do tend to ramble on!
xxx
Wednesday, 14 September 2011
Clinic and Bad Times.
Last Wednesday I had to attend clinic to speak about Harefield and as far as I am aware, my transplant referral has been sent off. It wasn't a very good clinic to be fair, I had a few issues I wanted to bring up and it didn't go down well, but I've come away from them knowing I said what I needed to say.
There is a tablet called Megace which is used to treat breast cancer but it has a huge side-effect of weight gain, so other CF centres prescribe Megace for patients who have very small appetites or need to gain weight. To me it sounded like a tablet that could benefit me but when I asked Papworth they said they preferred not to prescribe it to their patients because it can stop periods and cause hormonal problems. So I felt annoyed that most other centres prescribed it yet I couldn't get it, so I put forward a huge case using my friends experiences with how much weight they'd gained and the amount of people who said it was a wonder drug outweighed the people who said they had any problems, to me having no periods will be a blessing in disguise ;)! So anyway, it worked and I got the tablet and although we had a few 'issues' finally getting the prescription, I think they were very reluctant and therefore not very co-operative, I finally managed to collect Megace from the chemist yesterday! So far I'd say it has increased my appetite, I literally could barely touch food just lately because I'm feeling so ill I'd have half a normal portion for dinner and the odd snack. Already today I've had two 'normal' portions of lasagne, lots of cakes and other snacks then on top of that my supplements, so it's definitely done something! If this tablet works for me as well as it has for others, my weight should increase and I will be one step closer to transplant.
Now on to where I am right now.
My weekend away in Blackpool had to be cut short because I was very unwell, I was experiencing severe lung pains and could not stop coughing, then on Sunday I woke up and my arthritus had flared up badly, I couldn't hardly walk at all and then the lung problems on top of that meant I needed to come home.
Then on Monday night, I dragged myself out of the house to go to poker because I'm very stubborn and even though my body is saying no, I persist on saying yes. I was okay while there, I'd taken pain-killers so I was at ease a little but still wasn't feeling great.
However, then when I got home I felt this odd feeling which feels like water spreading across my lungs and a constant crackle which doesn't ease, that's when I knew I was having a lung bleed and sure enough, next thing I know my mouth is full of blood, it was quite a nasty bleed and was probably my worst one. It made me dizzy and felt a bit faint, but it did ease the pain a little bit. I still felt horrific though.
Fast forward to last night, I suddenly got stabbing pains in my right lung, I've had pleurisy before and the pain felt very similar to that, it's by far the worst pain I've ever experienced, I will say this - pleurisy is evil.
On top of all that drama, I'm coughing non-stop, completely breathless, in a lot of pain and feeling downright awful.
But at least I'm hungry....
So, not really a fantastic blog but there are small elements of good news in amongst this - the Megace and the appetite increasing, hopefully the effects will continue to improve and I'll be permenantly attached to the kitchen lol!
Apologies this isn't a great blog, but everyday isn't always great for me and I definitely feel I'm going downhill quite rapidly now, so my need to gain weight is getting greater by the day but thankfully Josh has been Godsend the past few days and I don't think I'd have made it through without him <3
Thank you for reading.
xxx
There is a tablet called Megace which is used to treat breast cancer but it has a huge side-effect of weight gain, so other CF centres prescribe Megace for patients who have very small appetites or need to gain weight. To me it sounded like a tablet that could benefit me but when I asked Papworth they said they preferred not to prescribe it to their patients because it can stop periods and cause hormonal problems. So I felt annoyed that most other centres prescribed it yet I couldn't get it, so I put forward a huge case using my friends experiences with how much weight they'd gained and the amount of people who said it was a wonder drug outweighed the people who said they had any problems, to me having no periods will be a blessing in disguise ;)! So anyway, it worked and I got the tablet and although we had a few 'issues' finally getting the prescription, I think they were very reluctant and therefore not very co-operative, I finally managed to collect Megace from the chemist yesterday! So far I'd say it has increased my appetite, I literally could barely touch food just lately because I'm feeling so ill I'd have half a normal portion for dinner and the odd snack. Already today I've had two 'normal' portions of lasagne, lots of cakes and other snacks then on top of that my supplements, so it's definitely done something! If this tablet works for me as well as it has for others, my weight should increase and I will be one step closer to transplant.
Now on to where I am right now.
My weekend away in Blackpool had to be cut short because I was very unwell, I was experiencing severe lung pains and could not stop coughing, then on Sunday I woke up and my arthritus had flared up badly, I couldn't hardly walk at all and then the lung problems on top of that meant I needed to come home.
Then on Monday night, I dragged myself out of the house to go to poker because I'm very stubborn and even though my body is saying no, I persist on saying yes. I was okay while there, I'd taken pain-killers so I was at ease a little but still wasn't feeling great.
However, then when I got home I felt this odd feeling which feels like water spreading across my lungs and a constant crackle which doesn't ease, that's when I knew I was having a lung bleed and sure enough, next thing I know my mouth is full of blood, it was quite a nasty bleed and was probably my worst one. It made me dizzy and felt a bit faint, but it did ease the pain a little bit. I still felt horrific though.
Fast forward to last night, I suddenly got stabbing pains in my right lung, I've had pleurisy before and the pain felt very similar to that, it's by far the worst pain I've ever experienced, I will say this - pleurisy is evil.
On top of all that drama, I'm coughing non-stop, completely breathless, in a lot of pain and feeling downright awful.
But at least I'm hungry....
So, not really a fantastic blog but there are small elements of good news in amongst this - the Megace and the appetite increasing, hopefully the effects will continue to improve and I'll be permenantly attached to the kitchen lol!
Apologies this isn't a great blog, but everyday isn't always great for me and I definitely feel I'm going downhill quite rapidly now, so my need to gain weight is getting greater by the day but thankfully Josh has been Godsend the past few days and I don't think I'd have made it through without him <3
Thank you for reading.
xxx
Wednesday, 7 September 2011
Harefield and General Life Really..
Monday I attended Harefield hospital for an 'informal visit' meaning I had a look around the hospital, met some of the transplant team and also get a feel for the area.. So it was just to get an idea of whether I wanted to go there for transplant basically and the answer is YES!
I was really impressed with Harefield, the transplant clinic was very spacious and modern-looking, ITU (intensive care) was scary and very surreal knowing (hopefully) the next time I have to go there would be straight after my transplant if everything works out the way we hope! I also looked around the wards and met the transplant co-ordinators.
The co-ordinator I met was so helpful, after showing me around the hospital we all went and sat in the canteen for about an hour discussing all things transplant, she answered a lot of my questions and put me at ease. I feel I am making the right decision for me and my future going to Harefield!
I'm off to clinic tomorrow where I will be telling my consultant that I am definitely ready for my referral to be sent off, once Harefield receive it they will either contact me if there are any concerns (for example my low weight, however they said they accept people on the transplant list with lower bmi's if they have put a lot of effort in, or worked hard to get to where they are) So I may be okay and then I will get an appointment for my pre-assessment which is a 1 day appointment, lots and lots of tests in the morning, then a meeting with the Doctor in the afternoon to discuss where to go from there - if they believe I am a good candidate for transplant I will be invited to attend a 2-day assessment which is even more tests, lots of important chats and then I would find out whether I would be listed for transplant or not.
So very nervous, but also kind of exciting times ahead.
One of my lovely CF friends, Sophie, had a double-lung transplant 2 weeks ago and is still in Harefield, I went to say hello but bless her she was sound asleep :) but it was nice to see her and also to know that she is doing well in her recovery! So I wish her the best of luck to keep up the amazing work and hopefully I'll bump into her at Harefield one day!
I also did some work with the Live Life Then Give Life charity today which meant I got to meet the wonderful Emily, who was so lovely, Emily is almost 5 years post-transplant who also has CF - we are sort of allowed to mix as she no longer has CF, but because I can make her unwell we kept our distance :) But it was great to meet her and see how well she is doing!
So had a good few days, once clinic is over tomorrow I can have a rest day on Thursday before Josh and I head off to Blackpool for our anniversary. On Friday we are travelling to Blackpool with a stop off at TGI Fridays for lots of calorific delicious food.. We are then going to watch Ipswich V Blackpool on Saturday and going to the pleasure beach Sunday (weather-depending) if it is a horrible day we will go shopping at the Trafford centre in Manchester instead! So I'm going to be one exhausted girl next week but I will hopefully enjoy myself and the suffering will be worth it, lol! Of course I will be taking my wheelchair and oxygen, I'm not going to wear myself out as that would be rather silly! Haha.
Thanks for reading!
xxx
I was really impressed with Harefield, the transplant clinic was very spacious and modern-looking, ITU (intensive care) was scary and very surreal knowing (hopefully) the next time I have to go there would be straight after my transplant if everything works out the way we hope! I also looked around the wards and met the transplant co-ordinators.
The co-ordinator I met was so helpful, after showing me around the hospital we all went and sat in the canteen for about an hour discussing all things transplant, she answered a lot of my questions and put me at ease. I feel I am making the right decision for me and my future going to Harefield!
I'm off to clinic tomorrow where I will be telling my consultant that I am definitely ready for my referral to be sent off, once Harefield receive it they will either contact me if there are any concerns (for example my low weight, however they said they accept people on the transplant list with lower bmi's if they have put a lot of effort in, or worked hard to get to where they are) So I may be okay and then I will get an appointment for my pre-assessment which is a 1 day appointment, lots and lots of tests in the morning, then a meeting with the Doctor in the afternoon to discuss where to go from there - if they believe I am a good candidate for transplant I will be invited to attend a 2-day assessment which is even more tests, lots of important chats and then I would find out whether I would be listed for transplant or not.
So very nervous, but also kind of exciting times ahead.
One of my lovely CF friends, Sophie, had a double-lung transplant 2 weeks ago and is still in Harefield, I went to say hello but bless her she was sound asleep :) but it was nice to see her and also to know that she is doing well in her recovery! So I wish her the best of luck to keep up the amazing work and hopefully I'll bump into her at Harefield one day!
I also did some work with the Live Life Then Give Life charity today which meant I got to meet the wonderful Emily, who was so lovely, Emily is almost 5 years post-transplant who also has CF - we are sort of allowed to mix as she no longer has CF, but because I can make her unwell we kept our distance :) But it was great to meet her and see how well she is doing!
So had a good few days, once clinic is over tomorrow I can have a rest day on Thursday before Josh and I head off to Blackpool for our anniversary. On Friday we are travelling to Blackpool with a stop off at TGI Fridays for lots of calorific delicious food.. We are then going to watch Ipswich V Blackpool on Saturday and going to the pleasure beach Sunday (weather-depending) if it is a horrible day we will go shopping at the Trafford centre in Manchester instead! So I'm going to be one exhausted girl next week but I will hopefully enjoy myself and the suffering will be worth it, lol! Of course I will be taking my wheelchair and oxygen, I'm not going to wear myself out as that would be rather silly! Haha.
Thanks for reading!
xxx
Thursday, 25 August 2011
Bad News, Then Some Better News!
I apologise for the lack of updates, I haven't really felt like blogging and some things had been playing on my mind a lot and was unsure how to put it into words...
It started with the day I left hospital, when my doctor came in to tell me I was okay to go and finish my IV's at home she then rained on my happy-going-home-parade with some not such good news -
I'll cut it short, they said they don't think I will get my weight up in time, with transplant there is only a short space of time in which to get on the list, when you are classed as 'too ill' for transplant, you cannot be listed. They said judging by my x-ray this admission compared to my last one in May there was significant difference in my lungs, basically meaning they had got worse in a very short space of time and the fact my weight has remained stable and not really increased much lately is suggesting I could be out of luck. I'm allergic to the best feed calorie-wise, I'm allergic to almost all of the calorific supplements and have very limited options for weight gain, there are things I can have and am having, but the best things aren't available for me unfortunately :(
So I'm in a bit of a difficult situation at the moment regarding the weight, but of course I am still trying very hard to eat as much as humanly possible, consume the extra calories from the supplements I can have and just hoping that someone throws me a lifeline soon and that my weight magically increases by the last 7 pounds that are required!
It's difficult knowing my time is running out, but as always, a happy positive mind is always needed in situations like this. I could of course decide to give up, but that is not me and never will be, I am determined even if I'm unable to get on the list I will continue working hard to maintain my health and increase my weight, because anything is better than nothing.
Now onto the better news, I have managed to secure myself a referral (finally) so a letter will be sent off to Harefield and I will be able to attend a transplant assessment, my thoughts were - even though my weight is too low to be listed at the moment, at least we can tick all the other boxes - I could have some underlying problem and be refused for transplant anyway, so at least I will be wiser as to what is completely required of me to get on the list, if I'm lucky enough to have that chance.
So as always I like to finish on a positive note, there hasn't been too much to smile about lately but I still am :) I didn't make it to V festival as I was too unwell, but I did manage to attend the poker finals which was fun! I went for a nice meal last night and went to see some family tonight!
CF, transplant or my weight will never get me down, regardless of what curve balls are thrown at me and what hideous obstacles are planted in my way, I always try my best to keep a smile on my face and overcome those hurdles in ridiculously high heels of course ;)!
Thanks for reading :)
xxx
Friday, 12 August 2011
I'm Back With An Update!!
Well, I couldn't stay out of hospital too long! I've been in 5 times already this year, prior to going downhill, I'd usually stay in 1/2 times maximum, so we are already at 5 hospital stays in 8 months!!
I had a very bad night about a week ago, I spent the whole day and night coughing up pure blood, had oxygen levels of around 80% whilst on 2/3L of oxygen, I hate to think what they would have been had I not been on oxygen! I was very breathless, to the point that even trying to speak was exhausting, I felt completely clogged up as if there was literally no air in my lungs, it was very very difficult and at times I wasn't sure if I'd make it through the days, so I gave in and called the hospital and they arranged an appointment for me, from which I was given a bed and here I am!
I've been on IV's now since Thursday afternoon and I'm not feeling better yet but I will hopefully feel the benefits soon. I'm also having extra calorie supplements, a 300 calorie drink and 3 shots of something called Calogen down my peg tube which gives me an extra 800 calories a day, so with my feed that's a total of 2100 just from supplements, because on top of that I am eating a lot too, the weight should go up now we are adding in all those extra calories!!
Anyway that is a quick update on me, It's been very difficult and I'm thankful for all the supportive messages I have received, it certainly has cheered me up and brightened up what has been a very tough time!!
I am going home Saturday morning because I have a few things to attend this weekend which I did not want to miss, then I'll be returning back to hospital on Monday. I'm glad my team have given me permission to carry on living and attend these things even whilst very unwell. I like to keep going and sitting in hospital for 2 weeks on end drives me crazy, however, the rest was very much needed and eases the pressure of trying to struggle doing things at home :)
I'm hoping that my next blog will be from a slightly healthier Kerry!
Thank you for reading.
xxx
Friday, 29 July 2011
Some of my recent thoughts..
Did you know, the average human being breathes between 18,000 and 30,000 times a day..
Now how many of those do you cherish? Everyone says every breath is precious, but would you really treasure something you do that many times a day and something your body automatically does without thought?
What if you had to fight for each of those little breaths?
Do you think they'd become a little more precious if you knew you might only have a certain amount left in your body??
I don't know about you, but I do.
I haven't wrote a blog lately because I'm struggling. Each breath is becoming more and more difficult and I am having to think about breathing, it's not an automatic thing anymore. I laid in the bath last night, trying to take deep breaths and I couldn't, I just had to gasp, gasp, fight, fight and fight some more.
Suddenly that thing you automatically do upto 30,000 times a day, seems a little more significant and a little less of an unconscious act..
So that is where I am right now.
That is why sometimes when people wonder why I've said "I don't feel well today" yet there I am, make up on, smile on my face, even laughing - I'd rather look well on the outside to cover up the path of destruction my body is currently on - because what is better to me, a comment or a sneer about 'looking well' or being told I look awful?? :).. I know it's certainly not the latter!
It's very difficult to try and explain exactly what it's like living with an invisible illness, but it's even more difficult trying to live your life with a body that is dying.
I still have a mind that wants to be like every other 20 year old girl, I have a mind that wants to be a fantastic fiancee, the perfect daughter, grandaughter, cousin, niece, friend. I have a mind that is not ready to slow down, a mind not ready to give up yet.
It's a very difficult process...
Particularly, when everything inside you is saying no, but you persist on saying yes.
What comes first nowadays? Health or life? It's a fine balance trying to keep both sides happy. A lot of negotiation, a lot of let-down and disappointment.
I wonder if on occasions I really should admit myself into hospital when I know I should or if it is important for me to attend whatever is planned and carry on living while I still have the ability to.
The health-side is dramatically and very rapidly taking over the life-side, I preferred to keep them apart because it didn't seem possible living in a world where I can keep both sides happy.
I'm always cancelling life things because of health and cancelling health things because of life...
I've been doing a lot of thinking lately, I've also been doing a lot of sleeping and of course trying to live a 'normal' life! Oh and the odd moan here and there, woe is me... Self-pity hah, oiiiii I'm allowed the odd day!!
Anyway, sincere apologies for the serious lack of blogging. I will, I'm sure, find something exciting and thrilling to blog about very soon!
I did have 3 of my very lovely friends round this evening which was great!! Laughter is the best medicine :)!
Live, love, laugh.
xxx
Now how many of those do you cherish? Everyone says every breath is precious, but would you really treasure something you do that many times a day and something your body automatically does without thought?
What if you had to fight for each of those little breaths?
Do you think they'd become a little more precious if you knew you might only have a certain amount left in your body??
I don't know about you, but I do.
I haven't wrote a blog lately because I'm struggling. Each breath is becoming more and more difficult and I am having to think about breathing, it's not an automatic thing anymore. I laid in the bath last night, trying to take deep breaths and I couldn't, I just had to gasp, gasp, fight, fight and fight some more.
Suddenly that thing you automatically do upto 30,000 times a day, seems a little more significant and a little less of an unconscious act..
So that is where I am right now.
That is why sometimes when people wonder why I've said "I don't feel well today" yet there I am, make up on, smile on my face, even laughing - I'd rather look well on the outside to cover up the path of destruction my body is currently on - because what is better to me, a comment or a sneer about 'looking well' or being told I look awful?? :).. I know it's certainly not the latter!
It's very difficult to try and explain exactly what it's like living with an invisible illness, but it's even more difficult trying to live your life with a body that is dying.
I still have a mind that wants to be like every other 20 year old girl, I have a mind that wants to be a fantastic fiancee, the perfect daughter, grandaughter, cousin, niece, friend. I have a mind that is not ready to slow down, a mind not ready to give up yet.
It's a very difficult process...
Particularly, when everything inside you is saying no, but you persist on saying yes.
What comes first nowadays? Health or life? It's a fine balance trying to keep both sides happy. A lot of negotiation, a lot of let-down and disappointment.
I wonder if on occasions I really should admit myself into hospital when I know I should or if it is important for me to attend whatever is planned and carry on living while I still have the ability to.
The health-side is dramatically and very rapidly taking over the life-side, I preferred to keep them apart because it didn't seem possible living in a world where I can keep both sides happy.
I'm always cancelling life things because of health and cancelling health things because of life...
I've been doing a lot of thinking lately, I've also been doing a lot of sleeping and of course trying to live a 'normal' life! Oh and the odd moan here and there, woe is me... Self-pity hah, oiiiii I'm allowed the odd day!!
Anyway, sincere apologies for the serious lack of blogging. I will, I'm sure, find something exciting and thrilling to blog about very soon!
I did have 3 of my very lovely friends round this evening which was great!! Laughter is the best medicine :)!
Live, love, laugh.
xxx
Saturday, 23 July 2011
I Will Be Back...
Thought I better do a quick message for my lovely loyal blog readers regarding my absence!...
I'm not feeling well at the moment, not well at all :( and I'm spending a lot of time asleep/moaning about feeling ill - lol!
I'm aware of the fact I haven't blogged since before my holiday, so when I finally feel up to it, it will be a big one.. Stuff about my wonderful holiday, my clinic appointment on Wednesday, my Gt Nanny's funeral on Tuesday and general other life-stuff :)
I apologise for not keeping you all up to date, if I don't feel well enough to be on the computer/facebook 24 hours a day, you know something is up!
All positive, get well vibes are much appreciated at the moment.
Thank you.
xxx
I'm not feeling well at the moment, not well at all :( and I'm spending a lot of time asleep/moaning about feeling ill - lol!
I'm aware of the fact I haven't blogged since before my holiday, so when I finally feel up to it, it will be a big one.. Stuff about my wonderful holiday, my clinic appointment on Wednesday, my Gt Nanny's funeral on Tuesday and general other life-stuff :)
I apologise for not keeping you all up to date, if I don't feel well enough to be on the computer/facebook 24 hours a day, you know something is up!
All positive, get well vibes are much appreciated at the moment.
Thank you.
xxx
Sunday, 10 July 2011
The Abseil
Today was the day we'd been waiting for, well some were dreading it, others were excited!! The abseil!!!..
The amount of people who came along to watch and show their support was amazing. A few of the people doing the abseil were very frightened, but they all managed it and I'm very proud of each and every one of them.
A special little mention for Megan Nelli, who broke her big toe on Thursday and has been on crutches, still had the determination to do it so I'm so so proud of her, despite the pain she was clearly in during and after the abseil, she still did it!! Love you lots Meg :).
The sun was shining all day and we have raised just over £2800, we really want to reach our £3000 target, so I know I'm starting to sound like an annoying broken record, but every contribution counts. So, if you can dig deep and can donate, it would mean a lot to me and all of my wonderful family and friends who helped make this day brilliant and raised so much money for people like me and the thousands of others who suffer daily with Cystic Fibrosis.
The CF trust is not funded by the government so everything is donation based, there is a potential cure in something called 'gene therapy' but right now, there is not enough money to begin proper tests on CF patients. This could be the cure we have all been waiting for, when I was a baby, the doctors told Mum they thought a cure would be found by the time I was a teenager, needless to say, it was not found. So literally every little donation is helping to bring that possibility ever closer...
Kerry Thorpe's Just Giving Page
I've had a fantastic day, the Evening Star newspaper were there and took some photos and I gave a quick interview, so that will be in the paper tomorrow night! :)
Thanks again and I'll be back after my holiday!
xxx
The 14 abseilers (who deserve all the glory) were as follows:
Matthew Brett - Step-Dad
Kimberley Thorpe - Sister
Tony Nelli - Father-in-law (to be)
Megan Nelli - Sister-in-law (to be)
Georgina Keinzley - Megan's Friend
Ashton Gibbs - Cousin
Chris Leek - Ashton's Boyfriend
Justin Dedman - Uncle
Steven Brett - Step-Uncle
Adam Chisnall - Second Cousin
Adam Wedlow - Second Cousins Fiance
Dean Knights - Friend
April Scott - Friend
Joe Louth - Friend
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| Just to give you an idea of the height! |
The amount of people who came along to watch and show their support was amazing. A few of the people doing the abseil were very frightened, but they all managed it and I'm very proud of each and every one of them.
A special little mention for Megan Nelli, who broke her big toe on Thursday and has been on crutches, still had the determination to do it so I'm so so proud of her, despite the pain she was clearly in during and after the abseil, she still did it!! Love you lots Meg :).
The sun was shining all day and we have raised just over £2800, we really want to reach our £3000 target, so I know I'm starting to sound like an annoying broken record, but every contribution counts. So, if you can dig deep and can donate, it would mean a lot to me and all of my wonderful family and friends who helped make this day brilliant and raised so much money for people like me and the thousands of others who suffer daily with Cystic Fibrosis.
The CF trust is not funded by the government so everything is donation based, there is a potential cure in something called 'gene therapy' but right now, there is not enough money to begin proper tests on CF patients. This could be the cure we have all been waiting for, when I was a baby, the doctors told Mum they thought a cure would be found by the time I was a teenager, needless to say, it was not found. So literally every little donation is helping to bring that possibility ever closer...
Kerry Thorpe's Just Giving Page
I've had a fantastic day, the Evening Star newspaper were there and took some photos and I gave a quick interview, so that will be in the paper tomorrow night! :)
Thanks again and I'll be back after my holiday!
xxx
Saturday, 9 July 2011
The Abseil Is Here!!! &An Update!
I haven't felt like I've had much to blog about lately, just been plodding along, eating as much as humanly possible (and more,) sleeping, nothing too exciting..
On Wednesday I went into town with Mum for the first time in a long while. My wheelchair was at Josh's and it was a quick last minute decision. We are going to Butlins on Monday (Josh and I, Mum and Matt, my sister Kim and her fiance Kieren) and I realised I didn't have a swimming costume because I don't fancy wearing a bikini with my ugly tube, not that I'll be doing much swimming but I may sit in the pool/go on the slides, so I found one I liked in Topshop so we intended to go there, which meant we could park disabled quite close and I wouldn't have to walk too far, however Topshop didn't have any costumes at all! So we then went for a bit of an unexpected walk and unfortunately my eyes were stronger than my lungs, meaning I couldn't resist all the pretttty clooootthhhesss. Lol! I went in a few shops, bought a playsuit which is so comfy I feel like I'm in my pyjamas ;) Before ending up in New Look, where I tried on more clothes and found a swimming costume I liked and didn't feel like too much of a granny in...
Got it in a size 8 too, I've been a size 4-6 for a while, so to finally fit a size 8 was great and showed me all that eating was starting to pay off! :)
By the time I got back to the car, despite the fact we walked at like 0.000000001mph, I was exhausted. It has taught me a lesson, I'm now not well enough to 'get up and go' I need to plan these things better, it was spontaneous and got me out the house for a bit, but it ruined me.
My pleurisy has flared up again which is causing me a lot of pain, unfortunately pain-relief barely touches the pain at the moment and I'm struggling quite a bit. Also my kidney stones obviously decided to go for a bit of a walk last night and the pain was horrific, Josh and I were out for a meal at the time and I suddenly felt like I was being stabbed and it was a bizarre kind of pain which I can only put down to that. We had to abandon our meal before I burst into tears in the middle of a slightly posh restaurant :P
But anyway, pain will never stop me. I'm go go go.
Really looking forward to our holiday!! Got some new clothes and have been trying to preserve my energy so I can really enjoy myself, there is a silent disco on Thursday in the over 18s club at Butlins, so we are going to that which will be fun. I intend to drink a lot ;) go kart a lot, sit on the funfair all day like a big kid and then eat the entire restaurant including tables/chairs/people and just make the most of it with my wonderful family and Fiance!!! :D
My next update will probably be after the holiday, but there is one more thing I must say..
Sunday is the day............. The abseil has finally arrived!
14 of my brave family and friends will be climbing the 150ft maternity block at Ipswich hospital, abseiling for Cystic Fibrosis, helping to change the lives of people like myself. If I wasn't so ill, the adrenaline junkie in me would be up there with them, but I will be cheering them all on from the safety of the ground!
So far we've raised around £2700 not including the money from 2 people, so I think we may be over the £3000 mark which is fantastic and I'm so proud they are doing this for CF! :)
If you want to sponser them, or if you just want to give some money to the CF Trust you can do it through this link...
Even if you only sponser a £1, any contribution, however big or small, will help change the lives of people like me..!
Thank you and I'll speak to you all again soon :)
xxx
Saturday, 2 July 2011
Hospital stay, weight gain, stable liver... Good news :D
I went in hospital on Monday and then came home Thursday, nice quick stay, seemed to go pretty fast as I knew I was going on Thursday, when you know the end is in sight, it does make it a lot more tolerable.
I was admitted to try a soya-based feed as they are pretty sure I'm allergic to milk protein, as opposed to lactose intolerant. Also I was going to have a 3 day glucose monitor on which checks your blood sugar every 3 minutes, this would give them an idea of whether my sugars go high/low during the day or night and particularly, what they do when on feed as it has no sugar, but is very high in carbohydrates. I was also having my feeding tube changed, having the stitches taken out and going for an ultrasound scan of my liver/kidney/spleen to see if my liver disease has got any worse/better etc. Finally, I was being started on a tablet which has a known side effect of weight gain and an increase in appetite...
So firstly, the feed - seemed to go very well, I tolerated 750mls for two nights, then tonight I'm going to try 1000mls which unfortunately, is not as calorific as the first feed, 1000mls = 1000 calories, so to get upto 2000 calories of the feed I'll be needed 2Litres, which seems pretty scary but hopefully I'll get there eventually! I'm now on Nutrison Soya which seems to be working much better for me, which means no horrific side effects and I can actually keep the feed down and still want to eat at the same time, perfect!
Secondly, the glucose tests. I won't know the results as they took it off just before I went home, but they will upload the results onto the computer and put them into a graph, so we can see exactly the pattern my sugars have, if they have one at all! I'm going to clinic after my family holiday to Butlins, where I will also be testing a new nebuliser which is only given to people who are very sick as it is super expensive!
I had my tube change appointment cancelled because of a traffic jam, meaning Josh took 5 and a half hours to get to Papworth, which meant my hospital transport was also caught up. It was changed to Thursday.
I had my stitches out first, which had been in a little bit longer than they should so they didn't come out as easy as they could, but still not really painful. The tube change was so simple, literally deflate the little balloon inside, pull it out, clean the area, put new tube in! Pain-free, easy peasy, done :)
I had my scan done and the good news was that there was no significant changes compared to my last few scans, my liver has not got worse and is remaining stable, which is good :) they've said at the moment there is no need to change anything and they are happy to continue having yearly check ups! The not so good news, was that they found a couple of small kidney stones, which I'm gutted about because I'm worried these could be the sort of things which might mean I can't have a transplant, I'm working so hard focusing on my weight and diabetes, then something annoying like my kidney could mess is all up :( Hopefully, they will pass quickly and by the time transplant comes, it will be a thing of the past :)...
Finally and probably most important - this tablet. It is called Olanzapine and is a tablet used in mental-health situations, particularly for Schizophrenia and Bipolar disorder. I have always suffered with depression and Mum is convinced I have bipolar (thanks Mum) so this tablet which I've been prescribed because it has a very common side effect of gaining 10 pounds in 10 weeks, may help in more ways than one.
It is also a calming/sleeping tablet and I find myself feeling very tired after taking it which is good because my sleeping is terrible at the moment.
I also feel absolutely STARVING all of the time, lately I haven't fancied food much at all because my chest is playing up and when you have no energy and feel rubbish, food is the last thing on your mind. But anyway to show you what it has done I'll tell you my 'meals' that I ate yesterday..
I wasn't allowed to eat until after I'd had my peg change and scan, so I wasn't eating until 12pm.
I had.. Lunch - A burger king, cheeseburger, chips, a coke, Jaffa cakes, 2 packs of crisps.
Afternoon - Mcdonalds burger, strawberry milkshake.
Dinner - Spaghetti bologanise.
Evening - Oxtail soup.
Night - Feed.
&Various other snacks and stuff - In total I had 3500 calories!
Then today after a 3 course meal out with friends, I weighed 6 stone 4.2 which is the highest weight I've been for a very very long time. (I also feel very hungry now, after a 3 course meal! It's madness, lol).. I'm now about to attempty 1000mls of feed, which will hopefully boost the weight! I'm so happy right now, my weight has made me feel fantastic. I noticed today my jeans actually felt tight, my cheeks look a bit chubbier and I don't have to try and make them look bigger with make up, they are naturally like that! Everything just is getting better. Except my chest, which is getting significantly worse day-by-day.
The worst bit about the hospital stay was my lung function, I had 4 attempts at checking it. The first 2 tries, I got 17% 3rd time 18% but I was determined to get over 20 so I had a 10 minute break, relaxed my lungs a bit, then blew the hardest I have in my entire life and managed to get 22% which is equal to my worst lung function ever, but much better than 17% ..the main problem was that after that attempt my oxygen levels dropped to 80% because I really over-worked myself and almost passed out, oops! :P
As I always say, it's not all doom and gloom. Lungs may be rubbish and I have some annoying little stones taking up residence in my kidney, but my weight is better, my liver is stable, my appetite is through the roof, I feel good about myself at the moment and life is (almost) okay :)
Thank you for reading!
xxx
I was admitted to try a soya-based feed as they are pretty sure I'm allergic to milk protein, as opposed to lactose intolerant. Also I was going to have a 3 day glucose monitor on which checks your blood sugar every 3 minutes, this would give them an idea of whether my sugars go high/low during the day or night and particularly, what they do when on feed as it has no sugar, but is very high in carbohydrates. I was also having my feeding tube changed, having the stitches taken out and going for an ultrasound scan of my liver/kidney/spleen to see if my liver disease has got any worse/better etc. Finally, I was being started on a tablet which has a known side effect of weight gain and an increase in appetite...
So firstly, the feed - seemed to go very well, I tolerated 750mls for two nights, then tonight I'm going to try 1000mls which unfortunately, is not as calorific as the first feed, 1000mls = 1000 calories, so to get upto 2000 calories of the feed I'll be needed 2Litres, which seems pretty scary but hopefully I'll get there eventually! I'm now on Nutrison Soya which seems to be working much better for me, which means no horrific side effects and I can actually keep the feed down and still want to eat at the same time, perfect!
Secondly, the glucose tests. I won't know the results as they took it off just before I went home, but they will upload the results onto the computer and put them into a graph, so we can see exactly the pattern my sugars have, if they have one at all! I'm going to clinic after my family holiday to Butlins, where I will also be testing a new nebuliser which is only given to people who are very sick as it is super expensive!
I had my tube change appointment cancelled because of a traffic jam, meaning Josh took 5 and a half hours to get to Papworth, which meant my hospital transport was also caught up. It was changed to Thursday.
I had my stitches out first, which had been in a little bit longer than they should so they didn't come out as easy as they could, but still not really painful. The tube change was so simple, literally deflate the little balloon inside, pull it out, clean the area, put new tube in! Pain-free, easy peasy, done :)
I had my scan done and the good news was that there was no significant changes compared to my last few scans, my liver has not got worse and is remaining stable, which is good :) they've said at the moment there is no need to change anything and they are happy to continue having yearly check ups! The not so good news, was that they found a couple of small kidney stones, which I'm gutted about because I'm worried these could be the sort of things which might mean I can't have a transplant, I'm working so hard focusing on my weight and diabetes, then something annoying like my kidney could mess is all up :( Hopefully, they will pass quickly and by the time transplant comes, it will be a thing of the past :)...
Finally and probably most important - this tablet. It is called Olanzapine and is a tablet used in mental-health situations, particularly for Schizophrenia and Bipolar disorder. I have always suffered with depression and Mum is convinced I have bipolar (thanks Mum) so this tablet which I've been prescribed because it has a very common side effect of gaining 10 pounds in 10 weeks, may help in more ways than one.
It is also a calming/sleeping tablet and I find myself feeling very tired after taking it which is good because my sleeping is terrible at the moment.
I also feel absolutely STARVING all of the time, lately I haven't fancied food much at all because my chest is playing up and when you have no energy and feel rubbish, food is the last thing on your mind. But anyway to show you what it has done I'll tell you my 'meals' that I ate yesterday..
I wasn't allowed to eat until after I'd had my peg change and scan, so I wasn't eating until 12pm.
I had.. Lunch - A burger king, cheeseburger, chips, a coke, Jaffa cakes, 2 packs of crisps.
Afternoon - Mcdonalds burger, strawberry milkshake.
Dinner - Spaghetti bologanise.
Evening - Oxtail soup.
Night - Feed.
&Various other snacks and stuff - In total I had 3500 calories!
Then today after a 3 course meal out with friends, I weighed 6 stone 4.2 which is the highest weight I've been for a very very long time. (I also feel very hungry now, after a 3 course meal! It's madness, lol).. I'm now about to attempty 1000mls of feed, which will hopefully boost the weight! I'm so happy right now, my weight has made me feel fantastic. I noticed today my jeans actually felt tight, my cheeks look a bit chubbier and I don't have to try and make them look bigger with make up, they are naturally like that! Everything just is getting better. Except my chest, which is getting significantly worse day-by-day.
The worst bit about the hospital stay was my lung function, I had 4 attempts at checking it. The first 2 tries, I got 17% 3rd time 18% but I was determined to get over 20 so I had a 10 minute break, relaxed my lungs a bit, then blew the hardest I have in my entire life and managed to get 22% which is equal to my worst lung function ever, but much better than 17% ..the main problem was that after that attempt my oxygen levels dropped to 80% because I really over-worked myself and almost passed out, oops! :P
As I always say, it's not all doom and gloom. Lungs may be rubbish and I have some annoying little stones taking up residence in my kidney, but my weight is better, my liver is stable, my appetite is through the roof, I feel good about myself at the moment and life is (almost) okay :)
Thank you for reading!
xxx
Sunday, 26 June 2011
My 'Celeb Gossip Style' Article
Kerry was quick to dispell rumours today that she is falling off the wagon. Last night Kerry was spotted drinking shots and triple spirits, before being snapped by the paparazzi, laying 'gracefully' on the floor of her home. Kerry, 20, who has recently come into the public eye, said - "If I do only have under a year left to live, I want to enjoy it. I'd rather be out partying and enjoying myself than sitting in everyday moaning and feeling sorry for myself!"
Kerry, was also reported to have had a similar experience last weekend after another night of heavy drinking, our sources tell us she tripped over a dustbin in her home twice, then proceded to speak to the bin, telling it she would stay there until the bin moved.
Kerry, who suffers from end-stage Cystic Fibrosis said - "I feel a bit more comfortable wearing my oxygen out in public now, which enables me to still have a little dance when out, rather than sitting there bored. I've always enjoyed a party and would hate my condition to stop me enjoying myself and doing what I love!"
When asked about the photo, Kerry said - "It's madness you can't have any privacy nowadays, not at the party, or in my own home! In regards to that photo, I'd just walked from the car, in my stupidly high heels and I was absolutely exhausted! A bed of nails would have probably seemed comfortable."
It is unknown yet as to whether Kerry has gone off the rails and become another victim of the young celebrity lifestyle, or if she really is just 'living her life.'
One thing is for sure, she knows how to party.
Hahaaa. I hope you have enjoyed my little pretend 'celeb gossip' type article ;) Clearly I was very bored! Here are a few photos from the ball last night, which raised £440 for CF!
So there you are :) Into Papworth tomorrow if there is a bed. Wish me luck :(
xxx
Kerry, was also reported to have had a similar experience last weekend after another night of heavy drinking, our sources tell us she tripped over a dustbin in her home twice, then proceded to speak to the bin, telling it she would stay there until the bin moved.
Kerry, who suffers from end-stage Cystic Fibrosis said - "I feel a bit more comfortable wearing my oxygen out in public now, which enables me to still have a little dance when out, rather than sitting there bored. I've always enjoyed a party and would hate my condition to stop me enjoying myself and doing what I love!"
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| Kerry after last nights antics. |
When asked about the photo, Kerry said - "It's madness you can't have any privacy nowadays, not at the party, or in my own home! In regards to that photo, I'd just walked from the car, in my stupidly high heels and I was absolutely exhausted! A bed of nails would have probably seemed comfortable."
It is unknown yet as to whether Kerry has gone off the rails and become another victim of the young celebrity lifestyle, or if she really is just 'living her life.'
One thing is for sure, she knows how to party.
Hahaaa. I hope you have enjoyed my little pretend 'celeb gossip' type article ;) Clearly I was very bored! Here are a few photos from the ball last night, which raised £440 for CF!
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| The wonderful Jo and I |
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| Lol |
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| Me, Mum, Matt and a CF balloon |
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| Us 3 again |
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| Josh and I :) |
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| Nanny, Grandad and I |
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| CF balloon and my oxygen, lol |
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| Breatheee... |
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| Hayley with the oxygen |
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| Grandad with oxygen |
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| Matt with oxygen |
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| Mum with oxygen |
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| Me during Jo's speech, in which I was mentioned :) |
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| Danceeee |
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| Our "V" poses |
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| More dancing, lol |
So there you are :) Into Papworth tomorrow if there is a bed. Wish me luck :(
xxx
Thursday, 23 June 2011
Kerry, Do You Want To Give Up?
I had clinic yesterday and to be fair, there wasn't much good news.
My lung function was down and my weight was the same!
So, we've agreed the feeds aren't working for me, I have some form of allergy to milk or something in milk and it's not something that can be easily tested for, we've now ruled out lactose intolerance, so it could be milk protein. Anyway, the feed I was having, despite being the highest calorie one, is not for me :(
I've agreed to go back into Papworth on Monday for 3 days, to test a new feed, probably a soya based feed rather than milk based, which should help, if not we'll try another until we get it right. They wanted me to go in hospital for a couple of weeks and I said no, I hate being in anyway I don't see the need because I'm not having IV's, I don't eat hospital food so the 'feed regime' wouldn't be a true reflection of my life, so they've decided I'll go in for 3 days, then go home with the feed and test it out in my normal daily life, with normal eating habits and sleeping patterns and see how it goes. Then have a week or so out, then back for 3 days etc.
I'm really glad we've come to this arrangement, 3 days will be fine for me if I can see an end to the stay, 2 weeks is a long time and when you are trying to focus on going home, it can seem a lifetime away. 3 days will suit me much better.
I'll also be having a 3-day glucose monitor, which is a small needle inserted under the skin around the stomach area, attached to a monitor which checks your blood sugar levels every 3 minutes. This is so they can keep an eye on my sugars and get an idea of what happens throughout the day/night, without me having to prick my finger 100 times a day lol!
It wasn't all rainbows and butterflies, it was pretty frustrating. The weight thing annoyed me. The fact my lung function is down after IV's again annoyed me. The fact I've got to go back in hospital, annoyed me.
But the worst bit, perhaps the most reality-type-smack-in-the-fact bit, was that my consultant asked me if I was sure I wanted to go through with it all, because it's so much work and with how unwell I am, they aren't sure if it might all be too much for me - so was I sure, or did I want to 'give up now' and they will focus on just keeping me well and preparing me basically, for death..
No matter how annoying, frustrating and difficult this is, I will never give up. I am not a quitter and I don't want to die, simple as that!!
So I shall leave it there - I'm Still positive. Still focused. Still determined. Still very hopeful that all the hard work will, eventually, pay off.
&Then I don't even mind if I don't get a transplant, I'll just be so pleased and proud of myself that against all odds, I was on the list and I'd made the (in their words) 'not impossible but very unlikely' actually happen :)
If you are reading this and are faced with difficult things in your life, hard decisions, tough times, situations that seem like they will never sort themselves out. I have one message for you... :)
Thank you.
xxx
My lung function was down and my weight was the same!
So, we've agreed the feeds aren't working for me, I have some form of allergy to milk or something in milk and it's not something that can be easily tested for, we've now ruled out lactose intolerance, so it could be milk protein. Anyway, the feed I was having, despite being the highest calorie one, is not for me :(
I've agreed to go back into Papworth on Monday for 3 days, to test a new feed, probably a soya based feed rather than milk based, which should help, if not we'll try another until we get it right. They wanted me to go in hospital for a couple of weeks and I said no, I hate being in anyway I don't see the need because I'm not having IV's, I don't eat hospital food so the 'feed regime' wouldn't be a true reflection of my life, so they've decided I'll go in for 3 days, then go home with the feed and test it out in my normal daily life, with normal eating habits and sleeping patterns and see how it goes. Then have a week or so out, then back for 3 days etc.
I'm really glad we've come to this arrangement, 3 days will be fine for me if I can see an end to the stay, 2 weeks is a long time and when you are trying to focus on going home, it can seem a lifetime away. 3 days will suit me much better.
I'll also be having a 3-day glucose monitor, which is a small needle inserted under the skin around the stomach area, attached to a monitor which checks your blood sugar levels every 3 minutes. This is so they can keep an eye on my sugars and get an idea of what happens throughout the day/night, without me having to prick my finger 100 times a day lol!
It wasn't all rainbows and butterflies, it was pretty frustrating. The weight thing annoyed me. The fact my lung function is down after IV's again annoyed me. The fact I've got to go back in hospital, annoyed me.
But the worst bit, perhaps the most reality-type-smack-in-the-fact bit, was that my consultant asked me if I was sure I wanted to go through with it all, because it's so much work and with how unwell I am, they aren't sure if it might all be too much for me - so was I sure, or did I want to 'give up now' and they will focus on just keeping me well and preparing me basically, for death..
No matter how annoying, frustrating and difficult this is, I will never give up. I am not a quitter and I don't want to die, simple as that!!
So I shall leave it there - I'm Still positive. Still focused. Still determined. Still very hopeful that all the hard work will, eventually, pay off.
&Then I don't even mind if I don't get a transplant, I'll just be so pleased and proud of myself that against all odds, I was on the list and I'd made the (in their words) 'not impossible but very unlikely' actually happen :)
If you are reading this and are faced with difficult things in your life, hard decisions, tough times, situations that seem like they will never sort themselves out. I have one message for you... :)
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| (Photo taken form weheartit.com) |
Thank you.
xxx
Sunday, 19 June 2011
The Press Ball, Generosity and Bloggers Block!
Sorry I haven't blogged for a while, I'd open up the page, think about writing and then my mind would go blank. I think I've had, what I can only describe as - 'bloggers block' :).
I suppose I could have bored you to death with the ins and outs of my, not so, exciting life, or I could just wait for something to happen that was worth writing about.
As you can see, I chose the latter option and here we are :)...
Friday night was the Evening Star press ball, which was a very glamourous, black-tie event. It was raising money for the CF Trust along with a few other small charities.
I was considered the 'special guest' or the 'guest of honour.' To begin with we went into a room with various people, including the mayor of Ipswich, who we met straight away and had a photograph with, we were greeted with champagne and it was very odd because people were saying they were honoured to be meeting me, it was all very surreal!!!
The event itself took place in a hall which had been very elegantly decorated to the theme of 'Atlantis,' think lots of greens/blues, colourful drapes and fish haha! I guess it actually sounds pretty weird, but I can assure you it looked amazing, almost fantasy-like!!
We were seated on a table with the girl who did my Evening Star article, a few of her collegues and a couple of business men. It was a 4-course meal, for starters was salmon (which I don't eat, lol - very fussy I am!) So Josh had 2 helping of starters. Main course was guinea fowl, which at first I genuinely believed was guinea pig, I'm also gullable lol, which was very tasty and I really enjoyed it, I was glad I braved eating it! Dessert was a trio of desserts, lemon syllabub, chocolate mousse and banoffee pie, I only like the lemon so did a few swaps and had a trio of lemon syllabubs, lol! Then followed my a nice cup of tea :)
There was plenty of wine and champagne flowing all evening, when I got home I realised I was actually quite drunk because I fell over a bin. Twice...
There was an auction, a raffle and then a Queen tribute act, who appeared on The One Show about a week ago.
Firstly there was a game of heads or tails - where you had to stand up and put your hands on your head, or your bum and if you won you stayed standing with a chance of winning a brand new TV. Anyway, I was rubbish, Josh, however, did well and got into the top 8 or so and was called up onto stage, unfortunately he didn't win, but a lady who was my 'hospital teacher' when I was at Ipswich won it and she immedietly said on the microphone she wanted to give the TV to me... I started crying because I thought it was a lovely thing to do and a very very kind gesture :):):) She is a wonderful woman!
If I thought it was going to end there, I was very wrong! Firstly, during the raffle I was given a prize of a weekend break in a cottage/barn type thing!
Then, during the auction, an anonymous person, bid £3000 on a diamond bracelet and gave it to me, also he bid on a box at show - gave it to me and a family photo shoot, which he also gave it to me.
I was in floods of tears, I was so humbled and it showed me that there are people in this world who are so kind, so thoughtful and amazingly generous enough to do something like that to help bring a smile to my face and some enjoyment during these difficult times. I obviously know who the person was, but they wanted to remain anonymous, I cannot thank this person enough and I am a very lucky (and happy) girl at the moment! :)
I was congratulated many times on my work recently raising awareness by various people, including our MP, a guy from the TV, the Mayor and many other wonderful people. I met some people from the CF Trust which was cool and I felt the evening really was the cherry on the top of the hard work I've been putting in just lately, in my campaigning.
The ball has currently estimated that on the night, we raised £16,000 but the total amount will be announced tomorrow!
So the night was fantastic even though I had to use my oxygen in public, even though I couldn't dance all night like I usually would, even though the reason I was there is because of how unwell I am and even though I do still have CF and still need a transplant - I was there, I danced (a bit) I cried, I laughed, I ate, I drunk, I smiled and I really enjoyed myself.. Despite all the rubbish that is going on inside my body, with all the difficulties and tough times I have ahead, an evening like that really made me feel brilliant and allowed me to (almost) forget what stage I'm at in my life right now.
Here is a picture of Josh and I, just as we walked in :)..
I suppose I could have bored you to death with the ins and outs of my, not so, exciting life, or I could just wait for something to happen that was worth writing about.
As you can see, I chose the latter option and here we are :)...
Friday night was the Evening Star press ball, which was a very glamourous, black-tie event. It was raising money for the CF Trust along with a few other small charities.
I was considered the 'special guest' or the 'guest of honour.' To begin with we went into a room with various people, including the mayor of Ipswich, who we met straight away and had a photograph with, we were greeted with champagne and it was very odd because people were saying they were honoured to be meeting me, it was all very surreal!!!
The event itself took place in a hall which had been very elegantly decorated to the theme of 'Atlantis,' think lots of greens/blues, colourful drapes and fish haha! I guess it actually sounds pretty weird, but I can assure you it looked amazing, almost fantasy-like!!
We were seated on a table with the girl who did my Evening Star article, a few of her collegues and a couple of business men. It was a 4-course meal, for starters was salmon (which I don't eat, lol - very fussy I am!) So Josh had 2 helping of starters. Main course was guinea fowl, which at first I genuinely believed was guinea pig, I'm also gullable lol, which was very tasty and I really enjoyed it, I was glad I braved eating it! Dessert was a trio of desserts, lemon syllabub, chocolate mousse and banoffee pie, I only like the lemon so did a few swaps and had a trio of lemon syllabubs, lol! Then followed my a nice cup of tea :)
There was plenty of wine and champagne flowing all evening, when I got home I realised I was actually quite drunk because I fell over a bin. Twice...
There was an auction, a raffle and then a Queen tribute act, who appeared on The One Show about a week ago.
Firstly there was a game of heads or tails - where you had to stand up and put your hands on your head, or your bum and if you won you stayed standing with a chance of winning a brand new TV. Anyway, I was rubbish, Josh, however, did well and got into the top 8 or so and was called up onto stage, unfortunately he didn't win, but a lady who was my 'hospital teacher' when I was at Ipswich won it and she immedietly said on the microphone she wanted to give the TV to me... I started crying because I thought it was a lovely thing to do and a very very kind gesture :):):) She is a wonderful woman!
If I thought it was going to end there, I was very wrong! Firstly, during the raffle I was given a prize of a weekend break in a cottage/barn type thing!
Then, during the auction, an anonymous person, bid £3000 on a diamond bracelet and gave it to me, also he bid on a box at show - gave it to me and a family photo shoot, which he also gave it to me.
I was in floods of tears, I was so humbled and it showed me that there are people in this world who are so kind, so thoughtful and amazingly generous enough to do something like that to help bring a smile to my face and some enjoyment during these difficult times. I obviously know who the person was, but they wanted to remain anonymous, I cannot thank this person enough and I am a very lucky (and happy) girl at the moment! :)
I was congratulated many times on my work recently raising awareness by various people, including our MP, a guy from the TV, the Mayor and many other wonderful people. I met some people from the CF Trust which was cool and I felt the evening really was the cherry on the top of the hard work I've been putting in just lately, in my campaigning.
The ball has currently estimated that on the night, we raised £16,000 but the total amount will be announced tomorrow!
So the night was fantastic even though I had to use my oxygen in public, even though I couldn't dance all night like I usually would, even though the reason I was there is because of how unwell I am and even though I do still have CF and still need a transplant - I was there, I danced (a bit) I cried, I laughed, I ate, I drunk, I smiled and I really enjoyed myself.. Despite all the rubbish that is going on inside my body, with all the difficulties and tough times I have ahead, an evening like that really made me feel brilliant and allowed me to (almost) forget what stage I'm at in my life right now.
Here is a picture of Josh and I, just as we walked in :)..
Thank you for reading.
If you wish to read the article write-up on the evening star website, regarding the press ball, here is the link.
xx
Saturday, 4 June 2011
Home and Reunited with Foxxy :)
I've actually been home since Tuesday but I didn't have much to say. I was quite content in hospital this time, which was shocking for me (and everyone else lol) normally by the week stage, I am ready for a fight with anyone, tearing my hair out with boredom and feeling so fed up I want to hit self-destruct. I'd be ringing family/Josh crying saying I was fed up, I'd be horrible to talk to on chat because I would just be constantly moaning..
This time, was really different and I don't think I moaned much at all, except for the pain perhaps!
I was actually fine, I listened to loads of music which kept me occupied, had lots of chats on facebook/msn, kept seeing Josh and Foxxy on webcam, I had great phone signal for the first time ever, so spent lots of time on my phone, facebooking and general other amusing things.
I think the pain from the PEG took over from boredom a little, I could still walk around, make cups of teas etc. But I think it definitely took my mind off other things.
However by the weekend I was ready to go, I'd been put on 3 IV antibiotics, for the first time, which seemed to do me good, I felt less breathless, coughed a lot less (which with the pain in my stomach, was a blessing in disguise!) and just had a lot of energy, too much energy to be cooped up in hospital for 2 weeks. Annoyingly, it was bank holiday Monday so I had to wait until Tuesday to drop the 'can I go home' bomb.
It was funny, I told anyone who would listen, physio/dietician/nurses that I was going home Tuesday. No matter what. I said I had planned all the reasons why I would be going home and how it would be more beneficial for me to be at home -
Firstly, eating, I don't enjoy hospital food and during a period in my life where gaining weight is vital, spending a few weeks without food I'd eat is pointless.
Secondly, I felt really well, too well in fact, I thought somebody would make better use of my bed, I know how annoying it is when you are waiting for a bed, especially feeling so well, so I'd have felt guilty staying when somebody could have been sat at home, begging, like I usually am, for a bed to become available.
& Finally. The stay had gone okay, normally when I get to the two week mark, I'm so fed up, I swear to myself I will avoid it like the plague, which includes playing down how unwell I am to avoid being admitted - Never a good thing. Whereas, I have left relatively happy, so when it comes to the next 'we think you should come into hospital,' I will think, look back to the last stay, decide how it went, then make my decision. If I was told, I needed to come in, after the week I was content, so I wouldn't say no.
Simple.
Anyway, all the people I spoke to 'reported' to the doctor our conversations, what they thought was best for me - physio was very happy with my chest, dietician was happy with my weight gain (WHICH WAS 4 POUNDS BY THE WAY!!!!) and we arranged a home care plan until my feed delivery arrived. &The nurses totally understood my reasoning.
Basically, I was ready, all guns blazing, to fight my corner against the consultant. But I was shocked to find, a registrar doctor came into my room and said "Hello Kerry, I'm here on behalf of your Dr.. Would you be happy if I said you can go home today?" Biggest smile on my face ever gave away my answer :D YES! So hope I went.
&Here I am now, unfortunately IV's are similar to that Bullseye show in the sense of 'look what you could have won.'
It's basically like 2 weeks of false hope, you think to yourself WOW I feel great, the IV's are fantastic. Then as soon as you stop them, literally for me it's 2-3 days later, i.e now :( you realise that it's a temporary high, a lot of people who are at the same stage as me are on permanent IV's, however, at the moment this is not really an option for me, when I am on IV's despite feeling well, my lung function tends to drop, at the moment while I can still function off them, I don't want to have constant drops in lung function, when it is this low already, a small drop could become quite significant.
You know I always like positivity and happiness in my blog, there is one thing I am very glad of and that was being reunited with my little baby Fox.
Of course in hospital, I missed Josh, Mum and all the rest of my family (and poker grrr!) But they could come and visit me, they could speak to me on the phone, but I could only see Fox on webcam!
So the moment I came in the door she went absolutely insane, I've never seen her so excited to see somebody in her little life, she was squeaking, jumping up and down, running between my legs and this carried on for a good 10-15 minutes, I couldn't sit down because she kept jumping at me trying to lick my face and with my tube pain, I was nervous!
I missed my Princess so much!!
I'll leave you with some pics of Fox on webcam :).
xxx
This time, was really different and I don't think I moaned much at all, except for the pain perhaps!
I was actually fine, I listened to loads of music which kept me occupied, had lots of chats on facebook/msn, kept seeing Josh and Foxxy on webcam, I had great phone signal for the first time ever, so spent lots of time on my phone, facebooking and general other amusing things.
I think the pain from the PEG took over from boredom a little, I could still walk around, make cups of teas etc. But I think it definitely took my mind off other things.
However by the weekend I was ready to go, I'd been put on 3 IV antibiotics, for the first time, which seemed to do me good, I felt less breathless, coughed a lot less (which with the pain in my stomach, was a blessing in disguise!) and just had a lot of energy, too much energy to be cooped up in hospital for 2 weeks. Annoyingly, it was bank holiday Monday so I had to wait until Tuesday to drop the 'can I go home' bomb.
It was funny, I told anyone who would listen, physio/dietician/nurses that I was going home Tuesday. No matter what. I said I had planned all the reasons why I would be going home and how it would be more beneficial for me to be at home -
Firstly, eating, I don't enjoy hospital food and during a period in my life where gaining weight is vital, spending a few weeks without food I'd eat is pointless.
Secondly, I felt really well, too well in fact, I thought somebody would make better use of my bed, I know how annoying it is when you are waiting for a bed, especially feeling so well, so I'd have felt guilty staying when somebody could have been sat at home, begging, like I usually am, for a bed to become available.
& Finally. The stay had gone okay, normally when I get to the two week mark, I'm so fed up, I swear to myself I will avoid it like the plague, which includes playing down how unwell I am to avoid being admitted - Never a good thing. Whereas, I have left relatively happy, so when it comes to the next 'we think you should come into hospital,' I will think, look back to the last stay, decide how it went, then make my decision. If I was told, I needed to come in, after the week I was content, so I wouldn't say no.
Simple.
Anyway, all the people I spoke to 'reported' to the doctor our conversations, what they thought was best for me - physio was very happy with my chest, dietician was happy with my weight gain (WHICH WAS 4 POUNDS BY THE WAY!!!!) and we arranged a home care plan until my feed delivery arrived. &The nurses totally understood my reasoning.
Basically, I was ready, all guns blazing, to fight my corner against the consultant. But I was shocked to find, a registrar doctor came into my room and said "Hello Kerry, I'm here on behalf of your Dr.. Would you be happy if I said you can go home today?" Biggest smile on my face ever gave away my answer :D YES! So hope I went.
&Here I am now, unfortunately IV's are similar to that Bullseye show in the sense of 'look what you could have won.'
It's basically like 2 weeks of false hope, you think to yourself WOW I feel great, the IV's are fantastic. Then as soon as you stop them, literally for me it's 2-3 days later, i.e now :( you realise that it's a temporary high, a lot of people who are at the same stage as me are on permanent IV's, however, at the moment this is not really an option for me, when I am on IV's despite feeling well, my lung function tends to drop, at the moment while I can still function off them, I don't want to have constant drops in lung function, when it is this low already, a small drop could become quite significant.
You know I always like positivity and happiness in my blog, there is one thing I am very glad of and that was being reunited with my little baby Fox.
Of course in hospital, I missed Josh, Mum and all the rest of my family (and poker grrr!) But they could come and visit me, they could speak to me on the phone, but I could only see Fox on webcam!
So the moment I came in the door she went absolutely insane, I've never seen her so excited to see somebody in her little life, she was squeaking, jumping up and down, running between my legs and this carried on for a good 10-15 minutes, I couldn't sit down because she kept jumping at me trying to lick my face and with my tube pain, I was nervous!
I missed my Princess so much!!
I'll leave you with some pics of Fox on webcam :).
 |
Saturday, 28 May 2011
A Bit Of An Update!
I have been in Papworth for 5 days today, I had my feeding tube fitted on Thursday.
At 9am Thursday I was collected and wheeled away on a bed into an ambulance. Then travelled 30 or so minutes to Addenbrookes hospital with one of the CF nurses. I went straight to endoscopy and waited for around an hour, I had been nil-by-mouth since midnight, so I was very hungry! The surgeon then came out and got me, I was very very nervous!
Firstly they had a look at my belly, I have had a feeding tube in before so had a small hole but unfortunately due to where it was positioned, they were unable to use it. So I have now got another hole about 4cm underneath the last one! They said after transplant, they would sort out plastic surgery to have a skin graft, meaning there would be no more holes :)! Anyway, because I already had a PICC line in, I did not have to have a cannula in my hand, which I was very glad about - so far so good!
They then gave me sedation and I remember thinking it wasn't working, until it hit me, everything went blurry and I couldn't see, it was awesome haha! They then put a camera down my throat, I remember feeling it and freaking out because I couldn't breathe, but once I had swallowed and calmed down I realised I was okay and that is the last thing I remember, until I awoke in recovery! The procedure actually only took 10 minutes, but I was asleep for around half an hour. Firstly they injected local anesthetic around the stomach area, they made a small insertion in my stomach, pushed the feeding tube in, then inflated a small ballon on the inside to hold it in place, they then put in a couple of stitches in which secured my stomach wall to my skin so there would be no complications afterwards - and it was done! Easy peasy and I don't remember any of it :)
I am in quite a bit of pain at the moment but it is better than it was. I'm on IV Paracetamol, Ibuprofen and Tramadol frequently, which is helping to control the pain. It is very sore when I cough and also when I move around, especially when I'm reaching for things. It also is quite sore to stand up straight, but I am told I have to stand up or it's no good, so despite the pain, I'm standing tall, haha!
I started my first feed on Thursday night, I had 250mls which is 500 calories, last night I had 375mls - 750 calories, tonight 500mls - 1000 calories. You get the picture! It's called Nutrison Concentrated, which is 2 calories for every ml, eventually I will be on 1000mls a night, giving me an extra 2000 calories! This will take the pressure of having to eat lots of food, when unwell, sometimes food is the last thing you want to think about. So everything else I eat will be a bonus. Luckily, I'm not feeling full from the feed so I'm still eating normally and still pigging out as always! :)
I will have the stitches in for a month, then they will change my tube from this...
To this...
At 9am Thursday I was collected and wheeled away on a bed into an ambulance. Then travelled 30 or so minutes to Addenbrookes hospital with one of the CF nurses. I went straight to endoscopy and waited for around an hour, I had been nil-by-mouth since midnight, so I was very hungry! The surgeon then came out and got me, I was very very nervous!
Firstly they had a look at my belly, I have had a feeding tube in before so had a small hole but unfortunately due to where it was positioned, they were unable to use it. So I have now got another hole about 4cm underneath the last one! They said after transplant, they would sort out plastic surgery to have a skin graft, meaning there would be no more holes :)! Anyway, because I already had a PICC line in, I did not have to have a cannula in my hand, which I was very glad about - so far so good!
They then gave me sedation and I remember thinking it wasn't working, until it hit me, everything went blurry and I couldn't see, it was awesome haha! They then put a camera down my throat, I remember feeling it and freaking out because I couldn't breathe, but once I had swallowed and calmed down I realised I was okay and that is the last thing I remember, until I awoke in recovery! The procedure actually only took 10 minutes, but I was asleep for around half an hour. Firstly they injected local anesthetic around the stomach area, they made a small insertion in my stomach, pushed the feeding tube in, then inflated a small ballon on the inside to hold it in place, they then put in a couple of stitches in which secured my stomach wall to my skin so there would be no complications afterwards - and it was done! Easy peasy and I don't remember any of it :)
I am in quite a bit of pain at the moment but it is better than it was. I'm on IV Paracetamol, Ibuprofen and Tramadol frequently, which is helping to control the pain. It is very sore when I cough and also when I move around, especially when I'm reaching for things. It also is quite sore to stand up straight, but I am told I have to stand up or it's no good, so despite the pain, I'm standing tall, haha!
I started my first feed on Thursday night, I had 250mls which is 500 calories, last night I had 375mls - 750 calories, tonight 500mls - 1000 calories. You get the picture! It's called Nutrison Concentrated, which is 2 calories for every ml, eventually I will be on 1000mls a night, giving me an extra 2000 calories! This will take the pressure of having to eat lots of food, when unwell, sometimes food is the last thing you want to think about. So everything else I eat will be a bonus. Luckily, I'm not feeling full from the feed so I'm still eating normally and still pigging out as always! :)
I will have the stitches in for a month, then they will change my tube from this...
To this...
:). So one month of having a long uncomfortable wormy tube, then I can have a nice neat little button tube!
My weight gain starts now!!!
Now to finish, here are a few pictures of life in hospital, lol:
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| Feed |
 |
| My Hospital Room |
 |
| My Big TV! &Get Well Cards :) |
 |
| Me After My Op! |
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| Feed Set Up |
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| The View Out My Window. |
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| Meeee :) |
Josh will be here soon, yay!
x
Thursday, 19 May 2011
Operation Date, IV's and A Very Bad Reaction!
I started IV's yesterday afternoon, after two very busy days between hospitals.
The first started at Addenbrookes Tuesday afternoon, I had an appointment with the surgeon who would be fitting my feeding tube. I explained to him I had a few things on in June, so I'd want to either have it after, or before where I'd have enough time to recover. He then said he could do the 26th May, which is Thursday and also my Mum's birthday! But I had to take that date, so that means my poor Mummy has got to spend her birthday between Papworth and Addenbrookes, seeing her daughter have an operation! :(
So the feeding tube is something I was so reluctant to do, I am dreading it and I know I will hate it. But as I've said before, if I want to be alive and have a body to hate, I need to have the tube - otherwise, I will never get on the transplant list and I will die! So what choice do I have really?!
I then was back at Addenbrookes Wednesday morning to have my PICC line inserted, it went in first time with no problems :) apart from it being very sore and achey once the local anesthetic wore off. It is still hurting quite a bit now and is pretty bruised, but it will hopefully calm down a bit over the next few days.
Then after I had my first dose at Papworth I was sent home on IV's - Meropenem and Ciprofloxacin. A lot of drugs require blood levels checked every few days to make sure you are not getting too much/not enough of the drugs, the two drugs I've been prescribed don't need levels checked for around a week, meaning I don't have to go back to Papworth until day 7 and day 14 of IV's. However, as I'm having my feeding tube next week I will be going into Papworth to stay in on Tuesday, so the levels isn't too much of a problem.
I have had both of these drugs before but you can always become allergic to something. The last time I had Mereopenem was in January, this is a drug with a common side effect of sickness, so I was prescribed anti-sickness, however, last time this was not enough to cope with the amount of times I was sick, so it was stopped and replaced by another drug - Ceftazidime. I did mention to my consultant yesterday, when they told me I would be on Meropenem again and they gave me anti-sickness and told me to see how it goes.
Well, how it went was very very badly!...
Last night, about half an hour after the Meropenem second dose, I projectile vomited, I then went very dizzy, developed a high temperature, yet felt absolutely freezing, my whole body was shaking and eventually I collapsed on the floor. Afterwards, my body didn't feel like it was my own, I was shaking and had no control over my legs, I tried to walk but couldn't, I felt like jelly! I don't remember going to bed, but when I woke up today I felt the same, still feeling very sick and I couldn't walk, I tried to get out of bed to go to the toilet and fell on the floor :(
I'm okay now as I haven't had any of that drug since last night, I still have a bit of a headache and haven't dared eat a proper meal yet, I've just been eating small and often, but I'm much better than I was last night/this morning. It's scary how something that is supposed to make you feel better, can make you feel so bad. I feel a little bit of an 'I told you so' but I understand why they gave me the drug in the first place and if it does work, it works well, so it is a shame I have developed this kind of reaction to it.
I have some pictures of me setting up the evil Meropenem! As you'll be able to see, home IV's are not an easy option at all, especially when you are so weak and exhuasted as I am (due to infection) when you have to do a lot of work to give yourself the drugs, it takes it out of you. The Meropenem was supposed to be 3 times a day, each dose 6 hours apart and the Cipro 2 times a day, 12 hours apart.
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| Good job I don't have a fear of needles, lol! |
For those in the know, a PICC line is different to a port and doesn't require you to be completely sterile, all the syringes/needles etc. are sterile and I have to be careful, making sure everything is clean, however, there is no need for gloves etc.
Also, Papworth don't use the same pre-made IV's that some other hospitals do (including Ipswich Hospital!) so I have to draw them all up myself -
Also, Papworth don't use the same pre-made IV's that some other hospitals do (including Ipswich Hospital!) so I have to draw them all up myself -
So as you can see, IV's are not a cure. They don't always do their job, but when they do work, they help to ease the struggle - I become a little less breathless, I won't cough so much and will have a bit more energy.
The grass is always greener on the other side, unfortunately standing in the way is a huge mountain that you have to climb, but once you get over that, things will be a little easier - well, until next time anyway.
xxx
Saturday, 14 May 2011
I'm Not Afraid Of Death.
Abseil.
Before I begin, I'd like to inform you all of a charity event we are organising!! :) On the 10th of July, some of my family and friends are taking part in an abseil down Ipswich Hospital for Cystic Fibrosis, the hospital is pretty high so for those with a fear of heights, it will be quite a challenge! I'm so disappointed I can't do it, but with my health as it is, I can't exactly abseil with my oxygen lol.. So I'm sorting out the organising and cheering everyone on from the safety of the floor!!
I've added a 'justgiving' page on the left where you can donate online ->
If you could, please donate some money to CF, to sponser my wonderful family and friends who are doing this! It's quick, easy and could help towards changing the lives of people, like me, living with Cystic Fibrosis.
Thankyou.
x
Now, on to the blog..
Something I've been thinking about, which has kind of been relevant lately, is death. I know it's not a very happy subject and it's not something people want to think/talk about, but it is something I am faced with daily and I'd like to share my views on it.
The first thing I want to point out is that I'm not scared of dying!
What I am scared of, is what will happen afterwards - I don't want my family to be suffering, I'm frightened of how they will take it, I don't want Josh to move on quickly, marry someone else and completely forget about me, I don't want to be forgotten full stop.
When you go for a transplant assessment they usually talk about writing a will and perhaps thinking about your funeral - I know I would want my funeral to be a celebration of my life, as opposed to mourning my death. I'd want it to be a happy occasion where people can have closure on the fact I am no longer suffering. I know I definitely want to be cremated because the thought of being freezing cold underground certainly doesn't appeal to me ;) I always prefer being nice and warm!
I have also been thinking about where I'd like my ashes scattered and something that has always been an idea to me, is to have half of them in England and the other half in America - because if I don't get my transplant and don't get the opportunity to go, at least I would have visited America somehow!! I know my Mum wouldn't travel to America but Josh could and it would mean he is be able to go to Vegas like we had always planned, I'd just be with him in spirit instead!
What you need to understand, from my point of view, is that for 20 years I have faced the prospect of not living a long life, I always knew the life expectancy was in the 30's and I knew transplant is usually only a last resort option.
I think that is why it doesn't frighten me, perhaps if I had never known how CF worked, I would be a lot more scared, but as it's nothing new to me, I can look at death in a completely different light. Of course it is something I have never experienced before, so the 'unknown' is always a scary thought! But I'm not going to spend however long I have left worrying about what it will be like, as they always say life is all about living in the moment and to be fair, with having CF, sometimes living in the moment isn't easy but I try my damn best and I can honestly say I don't regret anything, the people I've met, the places I've been, the things I've done, it has all made me who I am.
Every breath to me, however hard it may be, is precious and is something I will never take for granted.
On a lighter note - I do have a bit of a dark sense of humour and often make jokes regarding life and death, for example, Mum has asked me before what would I do if my hair was grey (because I love my blonde hair) I then respond with, I don't know, not many people will see it in a box...!
People often wonder how I could joke about things like that, but it's just normal to me!! I honestly am so happy with what I have done in my life and I'm not going to lie, I do have so much more life left in me, I know it! I'm positive, but also very realistic, I know my chances of getting a transplant are only 50% and then surviving 1-2 years afterwards isn't a definite, then 5-10 years is even less of a chance etc but if I spent my life dwelling on the statistics and what might or might not happen, I would not be living at all!
CF takes a lot of things away from me, such as my independance, but it will never take away my determination and spirit! I can guarentee you that up until my final breath, I will be fighting with every single inch of my mind and body.
I will not go down without a fight and if I don't win the battle, well at least I won't have to worry about that grey hair will I ;)!
Thank you for reading and thank you for all your support! :)
&If you haven't already signed up to be a donor, please do it now. It's so easy and something amazing could come out of a really horrible situation, I know death isn't something anybody wants to think about but it's something that I can't help but face, unless I receive a transplant - Becoming a donor genuinely saves lives. Sign The Donor Register!!!!
xxx
Before I begin, I'd like to inform you all of a charity event we are organising!! :) On the 10th of July, some of my family and friends are taking part in an abseil down Ipswich Hospital for Cystic Fibrosis, the hospital is pretty high so for those with a fear of heights, it will be quite a challenge! I'm so disappointed I can't do it, but with my health as it is, I can't exactly abseil with my oxygen lol.. So I'm sorting out the organising and cheering everyone on from the safety of the floor!!
I've added a 'justgiving' page on the left where you can donate online ->
If you could, please donate some money to CF, to sponser my wonderful family and friends who are doing this! It's quick, easy and could help towards changing the lives of people, like me, living with Cystic Fibrosis.
Thankyou.
x
Now, on to the blog..
Something I've been thinking about, which has kind of been relevant lately, is death. I know it's not a very happy subject and it's not something people want to think/talk about, but it is something I am faced with daily and I'd like to share my views on it.
The first thing I want to point out is that I'm not scared of dying!
What I am scared of, is what will happen afterwards - I don't want my family to be suffering, I'm frightened of how they will take it, I don't want Josh to move on quickly, marry someone else and completely forget about me, I don't want to be forgotten full stop.
When you go for a transplant assessment they usually talk about writing a will and perhaps thinking about your funeral - I know I would want my funeral to be a celebration of my life, as opposed to mourning my death. I'd want it to be a happy occasion where people can have closure on the fact I am no longer suffering. I know I definitely want to be cremated because the thought of being freezing cold underground certainly doesn't appeal to me ;) I always prefer being nice and warm!
I have also been thinking about where I'd like my ashes scattered and something that has always been an idea to me, is to have half of them in England and the other half in America - because if I don't get my transplant and don't get the opportunity to go, at least I would have visited America somehow!! I know my Mum wouldn't travel to America but Josh could and it would mean he is be able to go to Vegas like we had always planned, I'd just be with him in spirit instead!
What you need to understand, from my point of view, is that for 20 years I have faced the prospect of not living a long life, I always knew the life expectancy was in the 30's and I knew transplant is usually only a last resort option.
I think that is why it doesn't frighten me, perhaps if I had never known how CF worked, I would be a lot more scared, but as it's nothing new to me, I can look at death in a completely different light. Of course it is something I have never experienced before, so the 'unknown' is always a scary thought! But I'm not going to spend however long I have left worrying about what it will be like, as they always say life is all about living in the moment and to be fair, with having CF, sometimes living in the moment isn't easy but I try my damn best and I can honestly say I don't regret anything, the people I've met, the places I've been, the things I've done, it has all made me who I am.
Every breath to me, however hard it may be, is precious and is something I will never take for granted.
On a lighter note - I do have a bit of a dark sense of humour and often make jokes regarding life and death, for example, Mum has asked me before what would I do if my hair was grey (because I love my blonde hair) I then respond with, I don't know, not many people will see it in a box...!
People often wonder how I could joke about things like that, but it's just normal to me!! I honestly am so happy with what I have done in my life and I'm not going to lie, I do have so much more life left in me, I know it! I'm positive, but also very realistic, I know my chances of getting a transplant are only 50% and then surviving 1-2 years afterwards isn't a definite, then 5-10 years is even less of a chance etc but if I spent my life dwelling on the statistics and what might or might not happen, I would not be living at all!
CF takes a lot of things away from me, such as my independance, but it will never take away my determination and spirit! I can guarentee you that up until my final breath, I will be fighting with every single inch of my mind and body.
I will not go down without a fight and if I don't win the battle, well at least I won't have to worry about that grey hair will I ;)!
Thank you for reading and thank you for all your support! :)
&If you haven't already signed up to be a donor, please do it now. It's so easy and something amazing could come out of a really horrible situation, I know death isn't something anybody wants to think about but it's something that I can't help but face, unless I receive a transplant - Becoming a donor genuinely saves lives. Sign The Donor Register!!!!
xxx
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