Friday, 24 August 2012

First night out!!

I'm getting rubbish at blogging these days. Not had a good week this week, I mean I'm still better than I was months ago so I can't complain too much and i am still very grateful to feel as good as I do.

Barely had any energy since Tuesday feel so tired all time, soooo much stuff keeps coming up and becoming quite tight chested at the moment and breathless, haven't used oxygen and haven't checked weather I've needed it or not...it's so easy to slip back into old habits, got back into a routine of not using oxygen or needing it that maybe I might be neglecting my body of it or not recognising when I do need it...
So maybe I should keep an eye on that!!

Also this week Iv been living on paracetamol, been getting the worst headaches ever, ones that literally sting when lifting my head!! Very much disliking that! But hey Ho things can't always be perfect!

I've started taking my tablet with bacon now to make sure im getting lots of fat with it, also heard that taking kalydeco In between eating fatty foods can make it work better!? Just trying everything to get the most out of it! But funnily enough since doing that, that's when the headaches have started so god knows!

Something that has crossed my mind is I might have an infection? But I really don't no how I can tell the difference at the moment. I mean normally i know when I have an infection because I struggle more, or bring up more mucus, or cough more but since starting kalydeco thats most of the symptoms lol so it's a tricky one!
I have a hospital appointment at the end of this month I think but I think if I carry on and don't feel 100% il get myself to hotel Brompton, don't wanna take any chances anymore.

Anyways onto a brighter note!! Was a big brave girl last Saturday and took to a night out in my local town of Weybridge with a few of my mates! First time out since match 2011-and I loved every minute of it! Haha

When it got to 10pm and time to take my kalydeco tablet I ordered a nice cocktail and a packet of nobby nuts to take with it! Think the barman thought I was a bit of a weirdo ordering nuts-lol sod him, it was the only fatty thing I could think of having with it, was a bit early for a kebab wasn't drunk enough yet! Haha

So yeah I did it my first night out! I was Sooooo nervous going out and felt like a little kid just turned 18 again and never been out before! There's no way 6 months ago I thought without having some new lungs I'd ever go out again! I got all emotional about it that night thinking how scary bad things had got and how much life has changed again! Just too thing a little blue tablet could work such miracles!

That's all
Here's a few piccys!
Love love xx

39 days since started Kalydeco (5 weeks)
29 days off transplant list

Saturday, 18 August 2012

Thinking mode!

Laying in bed having a little think to myself... Been on my laptop this evening looking over pictures of myself this past year and thinking back over everything! It's been like a rollercoaster . It's crazy how you think life can be going one way, then the next it's completely changed!

One photo album that popped up whilst looking through was my "funeral pics" I'd gone through the Internet picking out flowers and all sorts I began to plan it perfectly....yet now I struggle to plan a bloody wedding!
Can't believe I even thought about a funeral and now I couldn't feel more away from that time in my life!!

It's been such a crazy emotional year, didn't even realise how bad it had got, been thinking about it loads lately, must of put such a strain on everyone around me as well!

It scares me to think I would/could ever get back to that again, I think mentally it would be a lot harder to deal with!

As far as I know from reading up on people on kalydeco the don't seem to get any worse, so hopefully that's how it will go for me and I will never have to rely on oxygen and wheelchair again, time will tell, the only disadvantage I have is that I have been that low so my lungs already have been damaged so once all the crap has stopped coming up should find out what the situation is really, weather my lungs were mainly blocked with mucus crap or weather it is mainly scarring from infections.
Even if I get a good 2 years with my lungs like this il be happy then I can try the transplant root again. Just think I would be sooo nervous going for transplant again now. I received my clinic appointment letter high lighting everything that was mentioned etc and it said on there about going back on the active transplant list once I'm married...but I'm too scared And don't think it's the right thing for me! I know summertime is always the best time of year for me anyways so maybe see how I get on at christmas and then see what and how I'm feeling in January if things are still good then transplant isn't right for me yet, if things aren't good then it's back on the list I go. By January i will have been on kalydeco 6 months so long enough to see what the crack is!

God life is a confusing mess sometimes! Can't just be simple in my little world! And no matter what I decided there's always someone who doesn't agree or has an opinion on it! In the end of the day, it's my life and I know what's best for me and I'm sooo stubborn and never listen to what anyone's says anyways ;)

Iv already proven the right people wrong ;p

Had a good little day today, cleaned my gorgeous little house done all my washing and put it out to dry on the washing line in the beautiful sun! Then went over to the famalams for dinner and took our dogs for a walk to the park! Love the fact I could walk there and around and back without struggling or getting out of breath! Sooo good il add some piccys at the bottom.

Also to prove my sats are so good just done them and took a pic! Pulse rate is sooooooo low for me like I said before its normally at rest over 100! And sats were good at 95%

Thank god for kalydeco! If I could personally meet the people who invented the drug I would give them the biggest kiss on the cheek EVER!! Words can't express how much I love them! I hope there nice people as I only like nice people lol

That's all that's in sprogs head!
Mucho loveo!
Xx

Thursday, 16 August 2012

4 weeks on Kalydeco

Thought I'd best start updating this blog a bit more like I use to!

I think now I have settled into life on this new drug, think I'm over the hype of it now and it all being a bit surreal!

Since last week iv had some crap days, yesterday ESP, the night before I was non stop coughing during the night and could not catch my breathe or rest it was such a horrible feeling, felt like I was being choked! And cause of the amount of coughing I was doing after about 20-30 mins solid I started getting chest pains and all I wanted to do was relax and sleep! So decided to take some oramorph which iv not taken since before my hospital admission pre kalydeco. I didn't have a syringe to measure and was so frustrated and knackered so I just poured the liquid into the lid and took that so dunno how much that was but couldn't have been a lot but almost instantly my breathe relaxed and managed to stop coughing and lay down and rest and sift back to sleep! Which was great.....

Until I woke up in the morning!!

Omg I regretted taking the morphine almost instantly. I was overwhelmed with sickness and I couldn't handle it! I've not felt sick in such a long time it was completely alien to my body and I literally felt like the biggest drama queen but I couldn't function!
10am came and it was time to take my dose of kalydeco but I couldn't literally I was heaving and the thought of putting anything fatty near my mouth made me feel even worse, I wanted to force myself but I knew either way I'd be sick and didn't want to sick up the tablet

Didn't no what to do, I need to eat as the longer I left it anyway my body was feeling sick cause I was hungry.. I haven't had to deal with worrying bout sickness in so long I was a bit lost on how to handle the situation lol and I needed to take my tablet!

The only way round it was to try make myself sick but I was too scared haha
So decided to go do some DNase get myself coughing and bush bosh bash I was sick. Lol finally that's the last time I was taking morphine cant handle that feeling, I managed to take my tablet around 12 and eat some pizza with it but I felt so crap the whole day, was so drowsy, had no energy, lifeless George everything was such hard work, it was a flash back to a few months ago... Although breathing is bit easier now.

Thankfully I was back to normal today!

Something that mum and I have noticed, that I think may have something to do with the drug.

I haven't checked in such a long time as never really feel the need to nowadays but I have my own little sats machine at home which measures my heart rate and oxygen. And one thing that really did shock me was my resting pulse rate. For me normally my heart rate at rest is anything from 101-125
That's because my heart is working harder because my lungs are so crap....welllllll when I checked them yesterday my heart rate at rest was 70!! That's crazy for me! I was shocked! That's like a normal persons heart rate! :) happy Sprog!

Not much other to report on health although I'm not feeling as great as I was, keep feeling really tight at times, but then it goes, think I'm being greedy, let's face it I can walk about a lot more than I was and not confined to a wheelchair on oxygen! So I should be grateful but still clear lots and it is early days still :)

Wedding plans are coming along nicely, can't really take any credit for that and I have realised I'm not girly at all really, weddings are so over rated these days...I think people forget what the purpose of weddings are!and there so expensive! So many things i want but unrealistic! But I have found my dress and venue and booked a date so I'm leaving lee and his best man to do the rest!

Mainly Looking forward to my holiday the beginning of oct! Soooo needed and I'm soooo excited! Cannot wait to tan up eat lots of gambas pil pil! Take a trip to marbella and Gibraltar to see the monkeys and just chill! It's been far too long! :)

That's all to update

Love love

20 days since came off transplant list

Thursday, 9 August 2012

First Clinic Since Starting Special K! (kalydeco)

this blog has taken me ages to write, keep getting side tracked been writing it for days now!!....

Since my last blog i been feeling a bit up and down. the day after i wrote my last entry i was feeling a bit rubbish, got a temperature for a couple days, had headaches and generally feeling a bit feverish. Been feeling much better now though aside from feeling the odd tightness here and there but that normally means something is coing up and is a bit stuck on the way. i have been using my isleep a bit recently to help things along which is like using the "bird machine" in hospital, because kalydeco helps it comeup easier and shifts alot more in my lungs using the isleep just gives it that extra boost of air and deep breathe! and lots of ventolin and dnase too!

So Tuesday 31st came, i was so nervous about going up there and yet so excited at the same time! the thought of having to tell my two consultants that i had taken it upon myself to come off the transplant list just made me feel sick! I knew i had/have done this for all the right reasons as i had spoken to harefield about it and they were totally fine, but explaining it to my team at the brompton was going to be a completely different story..... like i said i was going to do, i kept it all hush hush until i saw my doctors at the end!

so dietian came in and my weight was only 38.4kg....but to be fair thank god for kalydeco cause iv hardly eaten and not because i dont want to or feel sick as the sickness has COMPLETELY gone from my life, but i feel like iv just had no time! i eat normal meals but not really been concentrating on how much fat or calories are in each meal! the most important thing for me at the moment seems to be what fatty foods im taking with my kalydeco tablets at 10am and 10pm! so need to start focusing on my weight more or try drinking some of my fortisp drinks. i dont want to do my feeds at the moment purely because im being a stubborn bitch!! i hate them and i made myself do it before because i was on transplant list...im hoping soon i will just get a really good appetite again! iv already seen an improvement as normally when i have a meal infront of me i get half way through and cant finish cause its too much or i feel sick and thats not the case anymore!!

anyways back to clinic! so after dietian the physio came in, this was the one person i normally dread seeing yet this time i was too eager! lol
so she came in and she had a funky new machine to test lung function on which was also a sats machine!
sats were 96% at rest! then we tried the lung function....
well first of all i did a blow and it didnt regisiter because i blew at the wrong time or something wasnt pressed at right time so first one was a right off.....
now a few months ago getting me to do at least one lung function was a battle in itself as it normally completely wipes me out and i would end up having no energy, yet this time after it not registering it didnt bother me one bit havign to blow again-i wanted to blow more!!

so second time! then a third and fourth! haha with LOTS of coughing up in between and my lung function has gone up to 23% thats the highest it has been for over 18 months!!! so amazing!! its gone up 4% in two weeks which is a MASSIVE increase for someone like me esp as iv not had ivs or steriods!!

so that was it i was on a high....then she left, the next bit i was dreading!! which doctor would i see!
then my little irish cf nurse came in! can never remember her name but shes soooooo lovely! she was asking how i was getting on so mum and i told her how things had changed, so it had inspired her to go home that night and read up all about kalydeco! also spoke to her about being engaged and needing a fit to fly etc! and also asked her about wanting to do a sweat test to see what the difference is now after being on kalydeco. a sweat test is something they do to diagnose Cystic Fibrosis to be honest i dont really know too much about it but i know that being on kalydeco is ment to lower something haha so she said shes going to look into it and sort that out for me :)
as she was talking thats when my doctor came in...

the relieve on my face when i saw who it was haha (it wasnt any of my consultants)
so i knew breaking the news about being off the transplant list and wanting to travel was going to be alot easy to explain about!

he was asking how i am on kalydeco etc as he was quite involved in the clinical trials that are still going on, but me and another girl are like guinea pigs because all the trials have been done on people that have 40%+ lung function and who generally are alot healthier!

he totally understood why i have decided to come off the transplant list until after the wedding, he said if it was him he would have done the same, and i didnt really bring up how i felt about wanting to stay off it constantly i didnt think it was worth mentioning...one thing at a time! lol

then i asked if i would be ok to fly and go to spain to get married would it be safe, he said he couldnt see why not, people who are alot iller than me can fly so hes booked me for a fit to fly in september which i asume as iv had one before will just be wanting me to bring oxygen!

i had anoother liver function test whilst i was there so im assuming thats all good as i havent heard anything :)

so got another appointment booked for a months time.

achievement for me..i decided to borrow my sisters bike for a bit to build up this chest of mine and get some exercise going in my life...for the first time EVER! lol
so went over to my mum and dads with lee and dad fitted the bike seat for my size and then thought id take it out to see if i can still ride a bike and lee came with me to make sure i was ok, i started off a bit wobbly but i havent ridden a bike since i was at secondary school so i was bound to be a bit shakey but i got the hang of it and lee showed me how to use the gears and i was off! felt so good, wind in my hair, felt like someone from a film you no forest gump the bit when  hes running ahahaha CHEESEY!!! but yep that was me, but cycling my legs started to kill me within the first few mintues, prob a complete shock to them as i do NO exercise, then my hands went all tingerly haha...i managed to get around the block ish before i had to stop and go back as i started to struggle, i should have had oxygen with me and really felt it after,id hate to have seen what my sats had dropped too, so still not a new person yet but even just getting as far as i did was more than iv been able to do in years!

so for anyone that says Kalydeco doesnt work for people with "low" lung function is talking rubbish!! im living proof it does and its worth trying, i am soooo grateful to have been given this second chance again, iv still got a long way to go as it has only been 3 weeks and real changes take alot longer to show, but even if it doesnt and i stay like this i would happily live my life like this! after getting so low in health infection after infection, non stop ivs and hospital addmissions and hardly lasting 17 days out of hospital before i would be back in again for at least  2-3 weeks my life has turned around. not having to rely on oxygen to breathe, going out without having to use my wheelchair, being able to walk around my house without having to sit down for at least half hour to get my breathe back, having a bath and get ready straight away after getting out rather than having a bath with oxygen haning  off me and being wiped out and falling asleep on my bed after because i was exhausted, the list could go on..... i had started to give up and just resigned to the fact i was waiting for a transplant, i stopped wanting to go out much and just felt safe with lee and my mum! it wasnt much of a life to live looking back!

i hope and prey everyone that has my gene the G551D gets the chance i have been given and also kids now born with this gene with never have to experiance how ill i got and will never have to worry about waiting for new lungs or have to plan there funeral with there family and loved ones incase the call for a transplant never came!

anyways enough of the serious depressing stuff!! not like me to go that deep but just want it to be a bit of an eye opener to people who dont understand how important this drug is!

so i have blogged before about my friend mickey "the machine" as i like to call him after doingabout 4 marathons already this year rasing money for Cystic Fibrosis welllllll.....

hes only gone and done another thing!! Tour De Berkshire bike ride which was over 20 miles!!! not only did he do it though his amazing son reis also took part along with his dad and completed the 20 mile route!! he sonly 11 years old!! im so proud of both of them and truely grateful to them for doing it esp for CF heres some piccys!!






so massive thank you to Reis and Mickey Park!! :)

lastly heres couple pics ofmy little pooch! hes getting so big so fast!



thats all will try be a bit better at blogging next time got so much going on at moment planning this
bloody wedding! haha

love love

14 days off transplant list
24 days since started kalydeco
59 days until i get married ahhhh