The journey so far . . . hold on
It's a wednesday afternoon and on account that I dont have tinternet I'm sitting at my mum and dads. Things have changed quite a lot in the past year.
I'm a 24 year old with Cystic fibrosis and what was once an illness I believed I had full control over has kinda given me a shift kick in the ass recently.
As far as I was concerned Cf and I had a pact, if he was acting up I would have a good three to five days to decide if he was becoming enough trouble that I'd need to pay good ol garty a visit.
However last October I caught a cold which quickly turned into a virus which basically floored me in two days. Every movement was a bloody workout, I felt like I'd been winded constanly and every bit of energy that was entering my body was quickly draining right out my toes.So I was admitted for 3 weeks and because it was a virus9which we know now) for the first two weeks nothing seemed to work, so in my head I had to adjust to the fact that maybe this was me. Maybe Cf had done a quick balaclava style run up and jumped me from behind when I had no friggin warning.
It was also during this stay I had my first instance of coughing up blood, it makes me laugh now cos I totally overreacted, but hey large amounts of blood exiting your mouth just aint fun. I stumbled out my room and cried"Can anyone help me". Oh I coulda won an oscar for my performance.
SO I recovered . . . . . my boyfriend (I shall refer to him as spiderhobo, on account that he likes to climb and he often resembles a homeless person, although a damn fine sexy homeless person) and I started to make plans to go travelling in September 2008, priced up at 1300 to visit New Zealand, Oz, Dubai, USA and Canada. I wasn't going to inform the CF staff till the last minute as I'm more than aware they wouldn't want me to go(I have a lung function of 30%), but I'm 24, I could make my decisions and my parents were aware of this.
Now lets fast forward a few months to March, I had been doing some indoor climbing with SH(Spiderhobo) and we came home and had some late night dinner.I awoke about 2am and it all started. I thought at first I must have had a nightmare and was having a panic attack so I got SH to get me a plastic bag as I know this is how you calm someones breathing down who is having one(I have never had one). No matter how hard I tried I was unable to breathe anything substancial in.I told SH to phone an ambulance and from then on I sat on the edge of the bed struggling to try and get some breath. It's the most horrendous experience I have ever had, I was terrified I was going to die in SH's bedroom. He was the most amazing person, trying to hold my hand and comfort me but I had to push him away because if I started to cry breathing would have been even harder. He knelt down infront of me and I told him I loved him so much and I was really sorry that this was going to happen in his room. The ambulance could not find our address and SH had to leave the flat to get them, at first I tried to stop him but I knew I needed them. While he was gone I text my dad mobile as I would not have been able to talk to tell him that I thought him and my mum had given me the best life ever and how much I loved them. I'm glad to say my dad didn't recieve the text until the morning and that by that time they knew I was in hospital.THing is there isn't much the paramedics can do, try to relax you, but I was hoping they would stick a tube somewhere that would make me breathe. Oxygen wasn't doing anything I felt(though it was).We got to the Royal in Glasgow and what probably took 5 mins for the xray to come felt like hours, I couldn't understand why noone was fixing me. Then a lovely angel doc put in a chest drain- telling me we had to time to wait for anaesthestic but I felt not one thing. Then.....................................................................I could breathe.
I was in hospital for three weeks, in which time my lung collapsed a further two times, one time cos the drain almost fell out. But the amazing staff fixed me up and again I believed I would have to get used to the dramatic effect the collapse had had on my health.Three weeks flew by because of you amazing folk reading this, you kept me busy, you came to visit, you brought me sweeties, and you made me laugh.
So still going strong here, its an intro I must give you all details.
It took a lot of time but I have recovered from the collapse, but I'm not out the woods(who would want to be squirrels are very cute). There is a high chance I can have another collapse, and should this occur the chances of it happening again and again are inevitable.
So here we are today, Travelling hopes put on hold, and transfers to lung transplant team are on. I've been having transplant talks with the team for years so although scary I knew it was going to come up again for real sometime soon. Although I'm 30%age lung function, I still get about well, I can climb I can go long walks- with nice breaks every coupld of mins to catch my breath but I can still do it with help0 from SH.
But should the collapse occur again I would need to get a transplant. The idea of going down that route isn't even a choice for me, I know a lot of people dont want to do it, but the possibility of living on, of being able to spend more time with my beautiful nieces and nephew and boyfriend and parents who got me so far totally outweigh all the struggles/meds/tests etc to do with transplant.
I'm off to T in the Park this year so I'll keep you updated!
Oh and on a very nice note, my blows last visit to clinic post collapse were the highest they have been in 18months!
Kirsty xxxxx
I've kinda decided that this page won't be shared with others until I decide its time to let ya'll see it.
I'm a 24 year old with Cystic fibrosis and what was once an illness I believed I had full control over has kinda given me a shift kick in the ass recently.
As far as I was concerned Cf and I had a pact, if he was acting up I would have a good three to five days to decide if he was becoming enough trouble that I'd need to pay good ol garty a visit.
However last October I caught a cold which quickly turned into a virus which basically floored me in two days. Every movement was a bloody workout, I felt like I'd been winded constanly and every bit of energy that was entering my body was quickly draining right out my toes.So I was admitted for 3 weeks and because it was a virus9which we know now) for the first two weeks nothing seemed to work, so in my head I had to adjust to the fact that maybe this was me. Maybe Cf had done a quick balaclava style run up and jumped me from behind when I had no friggin warning.
It was also during this stay I had my first instance of coughing up blood, it makes me laugh now cos I totally overreacted, but hey large amounts of blood exiting your mouth just aint fun. I stumbled out my room and cried"Can anyone help me". Oh I coulda won an oscar for my performance.
SO I recovered . . . . . my boyfriend (I shall refer to him as spiderhobo, on account that he likes to climb and he often resembles a homeless person, although a damn fine sexy homeless person) and I started to make plans to go travelling in September 2008, priced up at 1300 to visit New Zealand, Oz, Dubai, USA and Canada. I wasn't going to inform the CF staff till the last minute as I'm more than aware they wouldn't want me to go(I have a lung function of 30%), but I'm 24, I could make my decisions and my parents were aware of this.
Now lets fast forward a few months to March, I had been doing some indoor climbing with SH(Spiderhobo) and we came home and had some late night dinner.I awoke about 2am and it all started. I thought at first I must have had a nightmare and was having a panic attack so I got SH to get me a plastic bag as I know this is how you calm someones breathing down who is having one(I have never had one). No matter how hard I tried I was unable to breathe anything substancial in.I told SH to phone an ambulance and from then on I sat on the edge of the bed struggling to try and get some breath. It's the most horrendous experience I have ever had, I was terrified I was going to die in SH's bedroom. He was the most amazing person, trying to hold my hand and comfort me but I had to push him away because if I started to cry breathing would have been even harder. He knelt down infront of me and I told him I loved him so much and I was really sorry that this was going to happen in his room. The ambulance could not find our address and SH had to leave the flat to get them, at first I tried to stop him but I knew I needed them. While he was gone I text my dad mobile as I would not have been able to talk to tell him that I thought him and my mum had given me the best life ever and how much I loved them. I'm glad to say my dad didn't recieve the text until the morning and that by that time they knew I was in hospital.THing is there isn't much the paramedics can do, try to relax you, but I was hoping they would stick a tube somewhere that would make me breathe. Oxygen wasn't doing anything I felt(though it was).We got to the Royal in Glasgow and what probably took 5 mins for the xray to come felt like hours, I couldn't understand why noone was fixing me. Then a lovely angel doc put in a chest drain- telling me we had to time to wait for anaesthestic but I felt not one thing. Then.....................................................................I could breathe.
I was in hospital for three weeks, in which time my lung collapsed a further two times, one time cos the drain almost fell out. But the amazing staff fixed me up and again I believed I would have to get used to the dramatic effect the collapse had had on my health.Three weeks flew by because of you amazing folk reading this, you kept me busy, you came to visit, you brought me sweeties, and you made me laugh.
So still going strong here, its an intro I must give you all details.
It took a lot of time but I have recovered from the collapse, but I'm not out the woods(who would want to be squirrels are very cute). There is a high chance I can have another collapse, and should this occur the chances of it happening again and again are inevitable.
So here we are today, Travelling hopes put on hold, and transfers to lung transplant team are on. I've been having transplant talks with the team for years so although scary I knew it was going to come up again for real sometime soon. Although I'm 30%age lung function, I still get about well, I can climb I can go long walks- with nice breaks every coupld of mins to catch my breath but I can still do it with help0 from SH.
But should the collapse occur again I would need to get a transplant. The idea of going down that route isn't even a choice for me, I know a lot of people dont want to do it, but the possibility of living on, of being able to spend more time with my beautiful nieces and nephew and boyfriend and parents who got me so far totally outweigh all the struggles/meds/tests etc to do with transplant.
I'm off to T in the Park this year so I'll keep you updated!
Oh and on a very nice note, my blows last visit to clinic post collapse were the highest they have been in 18months!
Kirsty xxxxx
I've kinda decided that this page won't be shared with others until I decide its time to let ya'll see it.
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