Where to start...
I was born in July 1985 and was one of the lucky (1 in 5) babies that was screened for Cf. My parents knew there was something not quite right,as i ate and ate and ate but it would all just go straight through me.
When i was 3 weeks old my parents got a knock at the door to tell them i have Cf.
As a child i grew up pretty much like any other,yes i had to do physio, take medication but i would play and run about till it felt like my legs would fall off! Up until i was 10 years old i never had any Iv antibiotics and never really had any serious bad patches with my health which was good.
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| Me!! |
I have 2 brothers,one older and the other younger and they are Cf free. I also have a half brother and sister who are also Cf free. Growing up i didn't get on with my older brother, our time together was spent fighting and driving our mother insane! Luckily we are nothing like that now. My younger brother spent most of his child hood in his own little world, playing with his imaginary dog in restaurants and climbing book shelves, In fact he still lives in his own little world, not too sure on the dog now though!
I was living in Milton Keynes with my mum and 2 brothers up until i was 10, I became critically ill and managed to get pneumonia. I was admitted to hospital straight away after seeing my Dr and was in for 5 weeks. I don't remember alot of it, but i remember not being able to do anything for myself and sleeping alot.
After all that my brothers and i moved to Staffordshire to live with our dad. It was a big transition for us and took a while to get used to,leaving our mother, school, and all our friends. I went to an all girls school, up until i was 16 then went to college in Stoke. While living in Staffs i was in and out of hospital for treatment and Iv antibiotics, approx every 3 months. Sometimes longer,and sometimes shorter. I got to know all the staff on the ward and alot of the long term patients, who i still stay in contact with now. I consider some of them my closest friends.
Around the age of 14 i developed diabetes and started taking insulin. My weight also was fluctuating constantly so i had to start doing over night feeds to get extra calories. I was doing it via Ng at first which means i would put a tube up my nose and down my throat into my tummy every night and then take it out in the morning, The first night i did this it was horrible, i was sick,cried and said i couldn't do it again. It felt so foreign to me. But then the following night i did it again and it felt alot better. I slept better and at times I forgot it was there, then i realised i could get used to it.
It was around this time that my mother became ill. I didn't see her very often since we moved away so it was quite a shock to see her like that. She passed away aged 39. I saw her a couple of times before she died but she wasn't really aware of what was going on or who was there. This was a very hard time for me as i was close with my mum.
I carried on doing Ng feeds for quite a while and was happy doing them because i could go to bed,pass my tube and then take it out in the morning when it was done without anyone knowing/seeing. My step mum on the other hand wanted me to have a gastrostomy. This is a tube that is put into the stomach and sits (permanently) above the belly button. I didn't really want one but she thought it would be easier and noone could see it. I still wasn't convinced but had it done anyway. It was one of the most painful things i can remember. Mainly due to continuous coughing fits the next day (from the anaesthetic) pulling my tummy muscles which had been cut, and the fact mine got infected. That was nasty,i looked pregnant for a few weeks and had to continuously change the dressing because it just poured with gunk (lovely!!),
While at college doing my A levels after getting good results in my GCSE's i was ill alot. I think it was the large quantity of people and bugs at the college which my immune system couldn't get used to, but i would manage to be in for upto 2 weeks then be back in hospital again for upto 3/4 weeks. It was a viscous circle. It got to the point where i missed so much work that i dropped out of college just before the end of the first year of AS level.
Not long after this i decided to leave home. I was not far off my 17th birthday and i didn't want to be at home anymore. I moved to Leicester where i have alot of family from my mothers side. I moved in with my auntie for about 6 months, and started working. After that i moved into a house with my older brother and my cousin. We gradually got bit and bobs for the house and eventually we had everything we needed. Although my brother didn't last long living with 2 girls and he moved out.
At this point my health wasn't too bad. My weight was good as i carried on with night feeds and had only been in twice for Iv antibiotics. It was strange moving hospital after being at north staffs for so long. Moving from a children's ward to adults was strange too. On my first meeting of my cf nurse (Bernie) i nearly gave her a nervous break down. i was rather negative i think about a new nurse and then when she went to flush my portacath it had broken again! (a portacath is a permanent Iv access under the skin). I had my first when i was about 13/14 in my arm and then another 3 over the following few years. Mine kept leaking in my shoulder in the tubing which was rather painful so they had to be replaced. Now I wouldn't change Bernie for the world and get on with all the staff on the ward, (well, most of them) which is great due to it being my second home.
I spent the following years living life to the full as much as i could. Going out, making a prat of myself and having many laughs which i will remember for the rest of my life. I took out my gastrostomy when i was 17 because when i was out on a few occasions people noticed it and kept asking what it was which i didn't like so i took it out with the understanding that i would pass an Ng tube again if my weight dropped.
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| Me and Kelly when living together |
I lived with my cousin up until i was 21 and then moved into my own apartment. I loved it. Health was still about the same, going abit down hill every 2/3 months and needing to be admitted but carrying on like any other girl my age. Not long after i moved i met Kierran. After about 5 months he moved in and hasn't gone since.
Over the past 5 years i have moved twice within the same area,bought 2 dogs (a Labrador and a sproker spaniel)learnt to drive, and worked for as long as my health would permit me to. I had to stop working when it got to the point it was making me worse and running me down. My health over 2 years ago started to slowly go significantly down hill. I was constantly in hospital,on constant steroids,back on night feeds for my weight and my lung function had gradually dropped. I had been having long lines and cannula's put in my arms for IVs but my veins were so poor i ended up having another portacath, which was then replaced a year and a half ago.
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| Me and Kierran 2006 |
Around this time i had my baby girl Annabella. I put about this on my "Cf mummy" page.
My health got to the point where i was having long spells in hospital and barely any time at home. This then went from a month at home,to a couple of weeks at home. a week at home and then a weekend. My time scale of being off IVs was shorter and shorter before i would become ill again. This was about august 2009 and i have been on permanent Iv antibiotics since.
December 2009 i had a rather bad spell with my health. I was taken in and straight away it was decided to go ahead with sending my details over to papworth hospital to see if i was at the stage for transplant. I was on constant oxygen and struggled to do anything. I was scared and constantly crying for weeks. But like everything i had to be strong for my daughter and the option of transplant seemed a no brainer.
I was sent to papworth for a pre assessment appointment. They do these appointments to see if the patient is eligible to go ahead for the assessment. The appointment didn't take too long and they went through my records and discussed the process with me. It was decided then that i would come back for the 3 day assessment which i did about 8 weeks later. Kierran and i went on the Monday and stayed till the Wednesday morning. While there i had bloods, scans, walking tests, xrays and lung functions etc and met with a surgeon, my transplant coordinator and Dr's. All aspects of the transplant was discussed and i was given alot to think about and decide. I was asked if i thought i needed a transplant which i found rather hard to answer. I don't want a transplant but i want to be there for my daughter and not struggle anymore. I have been told it wont necessarily pro long my life,but make the time i have better quality. There are statistics of rejection that gradually get less the longer time after transplant i manage,but its a case of taking each day as it comes and hoping the lungs don't reject anytime soon!!
The Wednesday morning i was due to leave, it had already been decided by the Dr's that i was "an ideal candidate for transplant" and they would go ahead with putting me on the list once my bloods had come back after about a week and a half. I was also told it would be a double lung or a heart and lung depending on what becomes available to my size,blood type,etc. If i were to get a heart and lung transplant then my heart would be donated to someone else. This was the end of march 2010.
Since then i am on constant oxygen. I have a portable cylinder to use when I'm out but i don't like people staring at me so I'm a bugger and don't use it much. I take around 25 pills a day then my Creon with food on top of that (8 with meals and 5 with snacks), I also have nebulisers throughout the day also. I carry on doing my IVs at home which (luckily) my nurse managed to get delivered to me from bupa since I had Bella which helps soooo much! It was rather time consuming and tiring mixing them myself especially when you have a baby and then to be on them constant! I go into hospital occasionally now. I try and last as long as possible at home, but i get worn out,mainly from burning the candle at both ends being a mum etc. So i go in for extra treatment and i get a break as such. My weight is good and i have kept it up since the decision to go ahead for transplant was made,because you need to be a certain Bmi (body mass index) to have it. I have people coming in once or twice a day to relief me from madam (Bella) and give me a chance to have a rest and do my meds etc. I get help from my family and friends too which i am very grateful for and would have struggled without them.
Its now march 2011 and i have been on the transplant list for a year. I have been petrified of getting a call so i haven't minded waiting too much. A part of me does want it so i can get it out the way and carry on looking after my daughter. But i will have to wait and see............
