Health is like money, we never have a true idea of its value until we lose it

Sunday, 9 October 2011

How my Life has changed

As i explained in my previous post i would explain more in depth a few things i thought I'd start of with how i was as a child, doing everything i wanted to do to how i am now struggling to go out for any length of time the major organisation if i do want to go out or stay out over night, also to the point of not planning as you almost know that something will go wrong if you do.....

Well as i touched upon in the first post, I used to read all the information on CF and think ''what is it on about'' I'm well i can do anything someone without CF does so whats the big deal i just have to take a few tablets. As a child i used to play football, play rugby, gymnastics, netball, then on a evening and weekend i went swimming, dancing and horse riding which were all important towards keeping healthy and sometimes i could do an activity as physio which i preferred to do. I was able to do all these until about 10-12....I did start struggling with running the school cross country which i used to detest, knowing full well I'd be last, and I'd have to stop a few times to catch my breath, sports days were another personal hate, i must have been the worst one at every thing, but it wasn't the winning it was the taking part, n what was easy for everyone else i had to put double effort in... On the rare occasion i did achieve a 2nd or 3rd  i was proud of my achievement

 Then it came to swimming, well nobody could stop me, i swam for school and always got 1st or 2nd place, i swam for Yorkshire and came a grand old 1st again, at least this was 1 thing i was good at that was great for my health, but slowly i got able to do less and less.... i stopped dancing, i stopped horse riding, and then i joined a gym n went most teatimes catching the bus from school. I'd often do an hour cardio and few weights, then go for a swim in the pool after, then as time went on i used to do less and less lengths of the pool as I'd get out of breath and end up coughing and spluttering which people used to turn and look at... slowly i started not doing as much cardio so i could enjoy my swim afterwards, after all it isn't just about exercise it's about enjoying it too, then i noticed a change.....i didn't feel up to doing any work in the gym n just went straight for a swim, which i suppose was better than nothing but looking back i wished I'd listened more to my body n pushed myself or asked for an extra set of IVs when i noticed not being able to do as much, before long going to the gym became a chore, so rather than paying a membership decided it'd be cheaper to just pay at a local pool if i wanted to swim, but i soon got out of the habit, and i didn't do much at all, even walking up and down to the bus stop  which is about 300m from our house was a hard walk so I'd ask mum to run me up for the bus etc, until i got a scooter. This was great i could get up n go without the dreaded thought of walking up to the bus stop as on one occasion the bus ride was hell, i couldn't stop coughing the elderly person in front of me got up from their seat n moved as far away as possible, i walked past them on the way to get off the bus, and just said 'it's not contagious i have cystic fibrosis' they looked confused, i then said 'Nothing is more terrible than to see ignorance in action.' 

By this time i was at college, I'd b able to park near the doors which was great but the stairs up to the classroom were a challenge in themselves, but i eventually made it, then my health dipped spending more time in hospital struggling to do my college work as i missed a lot of the lessons,  then i seemed to just plod along like this for a few years up until i caught the swine flu. This was the time when i realised after that i couldn't manage a sneaky night off my oxygen, as i paid for it the next day.... i struggled to even go shopping, without a rest, (thankfully i hate shopping) just little things i missed, all the information i read when i was younger was turning out to be true, i wasn't as well as i used to be.

I moved out of my mums and got my own place, i really started making an effort making sure i didn't miss any treatments, in all honesty someone that has said they never miss a treatment I'd say they weren't being exactly truthful (if you can honestly say you've never missed a treatment i will personally issue you with a gold medal) i managed, i got my shopping had friends round did washing and ironing, made my bed all of which i took for granted at mum's but was still able to do them although i didn't enjoy it it got done, then i moved house again just to round the corner, better parking etc, managed had help decorating got it looking decent, then things got harder taking my dog on a walk was a chore i didn't enjoy it anymore as i got so out of breath n uncomfortable i felt like my lungs were erupting every time i did anything on the exercise front then making the bed got harder walking up and down stairs loading and unloading the car with food shopping, not even a breath to spare to think about putting it away, I wouldn't admit defeat! i was going to manage! Things really got too hard n ended up with my dad picking me up and taking me to mum's to be looked after, 2days later ending up in hospital with swine flu...

It was then after the swine flu i really struggled to do anything, walking to my car, cooking dinner, having a bath/shower washing my hair even setting my night feed up was a problem, i couldn't manage! i needed help! , i realised my weight was going to take a dramatic decline.. walking downstairs was a chore... I'd already got a medical fridge upstairs so i ended up taking my bread n cheese n mushrooms upstairs n put them in there (at least i could make myself a cheese and mushroom toastie) i often threw some chicken and mushrooms in a pan with cream for dinner as it was easy, n i had to get downstairs to let my dog out in the garden, a friend of mine took her out for a walk sometimes... I went to stay at mum's for some help i still struggled, even at mums just going up and down the stairs once a day to eat a meal which had been made for me 

I suppose i didn't really know how lucky i was to have my health, breathing i took for granted n it really has made me realise how ill i have got... If i want to go out it takes me an hour to wake my lungs up and to come off the NIV, a bath n get dressed and ready used to take me 30mins it now takes an hour with extreme exhaustion afterwards (i just think is it really worth the hassle) then i have to walk downstairs, get my IVs sorted,get my oxygen filled up (which mum usually does) get to my car then it's like I'm on a time bomb with my oxygen, making sure it doesn't run out as how will i manage if it does? what if something goes wrong with the oxygen? i cant go too far from home just in case, i then have to set time aside for my IVs which sometimes i take out with me for flexibility as I'm on them 3x a day, if i did want to stop out over night that's a whole new task to move my oxygen concentrator, take my NIV, tablets, IVs, night feed i can maybe miss a night or so at the moment as the steroids helped me gain some weight. All in all is it really worth it? do i want everyone to see me on the NIV? I feel it makes me look like i am ill, or is that just the reality of how damaged my lungs have now become?

We never do know what we have until it's gone n now my health has gone what have i got left? I keep on going because failure IS NOT an option and i know there is light at the end of the tunnel. 

I once got told breathing through a narrow red straw (the type you get on calypso cups) while holding your nose is how somebody with cystic fibrosis breathes, if u can manage that just at rest try doing some exercise with it see how u cope with everyday life 

Keep Smiling :D
Jess xx

Saturday, 8 October 2011

23 years in one post

Well where do i start? a few of my friends have been asking more questions as they've seen me struggle breathing, on constant oxygen, they've seen me panic whenever my phone rings, and also as I'm struggling to get out like i used to without making myself unwell, so i decided to set this up to help them understand n give people an insight to what it's really like as they say ''behind closed doors''

20th September 1988.. the day i was born, nothing untoward.. 3 days later still not passed a motion, so mum asked the midwife who sent me to the hospital for investigation, it was then discovered i had a blockage (meconium ileus) n needed surgery to remove it so i was taken to Leeds General Infirmary (LGI) where the surgery proceeded. After surgery they had some good news, The surgery was successful and i was going to be OK, they also had what they described as 'bad news' they had found out i had Cystic Fibrosis although at the time my parents didn't really understand much about it, so they researched, got all information they could listened to doctors and i was put on medication, to make sure i had the best possible chance in the future, although at the time there wasn't much chance of me surviving past 6years old (just shows how much medical advanced since then 23years ago) 

After that i led a relatively 'normal' life, well apart from all the tablets, nebuliser, physio, high calorie diet, but i suppose having this since birth that was normal to me, at school i used to have a chocolate bar with 2 Creon sellotaped to it for break times, all the other kids we're jealous.. why did i get chocolate? what made me so special, little did they know these were crucial to keep me weight on, as if my weight declined so would my lungs i used to have regular appointments at hospital to check my blowing, and weight they'd try to encourage me to drink high calorie drinks called fresubin.

All in all i was pretty well until year 5 when i caught the 'hospital super bug' MRSA 10years old, i ended up in hospital for a full week i can remember it clearly cos i missed the neighbours bonfire (totally gutted), I'd never had to be in before or left on my own, i had my first cannula well of what i can remember of course i had them at birth but i was too young to remember that, i really trusted my doctor so I'd let him put it in with Emla cream on, not sure whether that ever worked to be honest but it was worth a try i soon picked up on treatment and i was back to my usual self in no time all my classmates had written letters, and made cards which got brought to me in hospital, and such a fuss was made but i felt fine.. then i ended up needing more intravenous antibiotics (IVs) every 6month - 1year. The doctor taught my mum how to mix the Ceftazidime which took a while to get used to it and a few sticky carpet marks where the needle had shot off at times which meant i could stay at home rather than be in hospital and just go to hospital for regular blood levels whilst having the IVs.... i can remember it being around Christmas time as we used to sing Christmas carols to try take my mind of the pain as it used to sting whilst going in no matter how slow we tried to administer it

I always seemed to have a cough, but it was more after sports, running around and i always thought i wasn't as fast as other kids because i was smaller, i just accepted my routine before and after school n just knew it was something i had to do because of my CF i had to get up at least an hour before all the other kids to give me time to have all my tablets, physio and nebuliser so there was times I'd think why is this fair, although other than the extras i did have a good healthy life which consisted of regular sport, gymnastics, football, horse riding, dancing

When i was 12 my specialist at Huddersfield Royal Infirmary told us he'd be leaving.. i couldn't imagine anything worse who else would be there to put my cannula in? If i did spend any time on IVs it would be him that put it in, we had his personal number as he didn't want the usual Dr's or nurses damaging the few veins i had, he then told us there wouldn't be another CF Dr it'd just be a cardiovascular Dr that probably didn't really understand CF. He'd fought to get me the crucial nebulisers i needed like Pulmozyme and Tobi both costing about £30 a time n i had to have the Tobi twice a day there just wasn't the funding, although he managed to get it.... He then told me if i wanted to be treated with no worry about getting medication i need n for someone that understands CF I'd need to transfer to St James Hospital at first i didn't want to leave HRI but they discussed my health in depth and thought it would be best for me if i had regular treatment which meant coming into hospital every 3months for 2 weeks, how did i go from needing Ivs once or twice a year to 4times a year, but although i didn't like being in there i had no choice and made the best of it meeting some fab nurses who were like my second family and lots more children with CF who knew exactly what was up n understood, there was a huge concern about my weight, although i was eating more than most people could imagine weight just dropped off me, they then started talking about nasogastric tube feeding over night at 15years old, which i agreed to and it took a lot of pressure of having to eat so much, they were telling me I'd have to have a gastrostomy (PEG) but i was determined i didn't want another operation and continued NG feeding to this day ...... I feel that although i do feed over night the tube i can just put in for my feed and take out every morning so nobody really knows (well they do now). This then caused a problem with my gall bladder, with the high calories most nights creating stones, so i had it taken out when i had just gone 16 (my gall stones even went to america, how cool is that)

Life was pretty stable i knew where i stood i knew every 3months i would get admitted into St James' and it held me pretty steady, i was slowly able to do less and less but i didn't let it stop me no way would i let it stop me, i didn't play as much sports as i ended up coughing more ending up out of breath, they found out i was allergic to horse manure, so mum had to do a lot of the work mucking out etc, so slowly i was able to do less and less then my health really took a decline and the horses had to go as mum couldn't look after me and them, i struggled riding in winter as i got really cold. Needing Ivs regularly i ran out of veins i was then told to make this easier i would need an operation to have a PASport fitted i was dreading it, even after the operation I felt so nervous i had something in me it didn't feel quite like it should be but then as i got used to it, they could use it for all my bloods, IV,s no cannula's bursting veins no nurses attempting 7 or 8 times to get a vein it was really the best thing that happened.

I then reached 17 time to grow up i had to move to the adult team at Seacroft, although with the transitional clinics i knew some of the staff, i still was unsure, they didn't seem as warm as on the children's ward, they brought your IVs n left u in a room no play nurse to come and entertain us, all we had was a computer and Internet, which was great for contacting the outside world, keeping up to date with things but everything was so clinical, it wasn't until i went in for an extended admission i got to know the staff, and they weren't as bad as they first seemed, i suppose we had more student nurses and less beds on the children's ward so nurses had the time to come in and spend time with us colouring or sewing etc but all in all i started getting used to it 

Then a massive bombshell ''we need to refer you for a lung transplant'' i was 17 basically the harsh reality was as the doctor said, we predict even if you stay at the level you are now you have 3years to live without a transplant and 5years to live if i have one now at the young age i was i felt what is the point in going through all that if it's only going to extend my life 2years as it's going to take up to a year to fully recover, so i came up with the conclusion i would go for the assessment with Freeman Hospital but reality was i didn't want it just yet the longer i could live life on my lungs, the more I'd get more years with the transplant i didn't want to think about death at 17.. but i had to.....It then took a while to get an appointment with the Freeman which i was relieved about gave me more chance to think things through to prepare myself for future to weigh up my thoughts and feelings and options during this time i spent a long stint in hospital they decided I'd need oxygen over night to help my saturation's as they dipped quite a bit, so that was installed at home i felt so unwell i honestly thought is this it? i wasn't even 18 ... was i going to make my birthday? Then i gave myself a swift kick up the backside n thought look at what i have got, not what i haven't n from that day I'd had sheer determination to prove the Dr's wrong and make sure my CF lives with me not me living with CF

So my appointment at the Freeman i was told, i am border line needing a transplant and although i needed to get the time right for me, this had to be before i was too ill and basically before it was too late but they did say I was a good candidate and it would be a bilateral lung transplant i needed but my heart was healthy (well at least one organ that works properly hey lol) so they said they'd keep me under review as i didn't want to rule out transplant i realised it was a big op n i suppose needed time to get my head around it, but although my blows were 28% i felt well i only used oxygen over night so i felt like i could do what i wanted to do and didn't feel it was necessary to take such a big step also with having being told a transplant has a 'lifespan' as such i didn't want a year to be wasted that i could have while i still felt OK on my own lungs 

So i guess then the next few years were steady plodding along 25%-30% blows n i felt well then when i was 20 they decided i needed to be under closer review of the transplant team as my blood gasses n co2 levels weren't getting any better they were worried that 1 chest infection n i wouldnt pull back up, so the appointments got changed to every 3months yet the next appointment i had, I'd picked up the results had been a bit better n said come back in 6months, so i felt on top of the world. my 21st birthday went to plan had an amazing family party then one month later my world came crashing down, i was at home feeling not so good (swine flu) was going round and me being me oh don't be daft, I've got a bit of a chesty cold (nothing new when having CF), anyway i was advised to get the tablets from the Dr as if i had swine flu as they thought it was flu n it couldn't do me any harm, i then went through to the ward, where a nurse came down to do a swab in the car, 2-3 days later confirmed my results came back i had swine flu GREAT just what i needed just as everything was going so well, after all they said people we're dying from this was this going to be the end? people that had no underlying illness's we're dying why would i get spared with faulty lungs? after that my lung function didn't quite recover but i defeated the rule that people we're dying of swine flu

I was determined to get my lung function back to normal, however 20-25% was now the normal for me, i realised maybe healthy lungs were not my speciality, and maybe i would have to think of the next step, i was now needing oxygen during exercise and overnight and also put on NIV overnight to help my bring my co2 down, i was plodding along for sometime, 17-20% is now the normal it'd had a few bugs maybe my immune system, and lungs just weren't healthy enough to fight off these bugs anymore, i seriously had to consider transplant, so i think i got it into my head, this is it now i struggle even walking, being off oxygen where had my quality of life gone i need to do something about this, the next time i went up to Newcastle my results had got worse but i think they realised i still wasn't quite ready then saw me again in 3months, then i accepted i needed to be on this list or I'm going to miss this chance.... my 22nd birthday was spent in hospital then the weekend after went for a lovely Italian meal i felt good again then was holding my own could manage a bit without oxygen when i was sat etc, 

It came to bonfire night i wasn't top notch had some IVs which didn't seem to pick me up quite like they should but by Christmas i really didn't feel well but there was no chance i was spending my Christmas day in hospital, then on the 27th December i admitted defeat and was admitted, having swabs again and guess what although i had my swine flu pneumonia and flu jab i still had swine flu AGAIN couldn't believe it, so after a PASport removal then reinsertion to try find the reason for temperatures they discovered i had CMV which lies dormant and just flares up from time to time, they also ended up finding out i had aspergillas so i was put on steroids and voriconazole, so the weight i always dreamed of piled on meaning i was in better shape for transplant, i had to cancel my appointment to go on the list as i was in hospital i eventually got out in April 2011, i then got an appointment the week after in which they had to do the original tests to check i was a suitable candidate, and it came back i was still in the window i then got actively listed on the 22nd June 2011

I'm now on IVs 2weeks on 2weeks off which seemed to be working until this last IV course in which the day after my birthday 21st September i ended up back in hospital after 2weeks of IVs and not picking up much they decided to do viral bloods, finding out the Aspergillas has flared back up, and I'm now on back on steroids, and Caspofungin to try and get that back under control, just after I'd manage to loose most of my steroid weight back to a health BMI so hopefully now they've found out the cause of my temperatures i should be back to normal in no time.

There is 1 major thing i have missed out 10th August but I'm going to explain that in a totally different post as i had a lot of different thoughts and feelings on this and maybe useful to people to refer to in the future 

I shall leave it there for now a little taster n update on what has gone on maybe i will refer back to this post to expand in some of the situations in the near future

Keep smiling :D
Jess xx