Monday 31 January 2011

When Being Ill is all I know

Well Saturday was a complete shambles, from the moment I got myself out of bed I knew It wasn't going to be a fun night, By the time i got to Stu's mums and dads, where we were staying for the night, as its closer to where we were going out, I had a raging temperature, felt sick and very breathless. I still got my self ready and dragged myself out in a shivery mess. I sat there looking at all the people having fun, thinking god they must thing I'm so boring. When ever Stu's friends see me I'm always ill and have a temperature, i swear its just the way it goes. So i never have the strength to crack a joke. Instead i sit there shivering and feeling like I'm going to pass out. In the end i decided enough was enough and asked Stu to get his mum to pick me up, he could stay i didn't want to ruin his night but if i stayed any longer I had a feeling i was going to ruin it for everyone else and collapse in front of everyone. I could not face that. So Stu's mum picked me up, stu had to help me to the car i felt like such a state and i went back and climbed in to my pj's feeling really really ill and actually a little scared. I hate feeling alone when i feel so ill, I know i wasn't but i wanted Stu or my mum you know the only people who really know you and can comfort you and make you feel safe.

Stu didn't stay long he was back by 11 with a curry, which by this time i felt a little bit better and managed to eat some, then we went to bed and everything felt a lot better.

At the moment I'm getting temperatures every day, sometimes they last all night, sometimes only half an hour. Once they pass i always feel a lot better. I'm Still very breathless and I'm coughing up loads. I wonder if i should have gone on IVs but then when being ill is all you know its sometimes harder to know if your iller then usual.

I'm packing for London today, I hate packing, its always so hard, makes me really out of breath. I'm always having to go up and down the stairs because i forgot something or rather. I hate stairs, i wish they never existed.

Anyway I'm off now, my next blog will probably be after my app, letting you all know how it got on, it Wednesday this week, so not long now. Wish me luck?

Saturday 29 January 2011

Partying, death and waiting

Sitting in my pj's wrapped up in bed. This is how i spend most mornings and early afternoon as it would now be. I hate mornings, I really do, temperatures, aches, terrible breathing and generally shittiness are what wakes me. Iv had a very strange week health wise, alot of ups and downs, moments when i really thought i should be in hospital and others when iv felt pretty good. I went out last Saturday night and iv got to say iv never been more proud of my little lungs, they did me proud, not only was i able to walk around loads, a rarity for me, I usually just get to breath less to stand for long, but i danced, I danced alot. I had to concentrate on me breathing alot but that doesn't matter i was still dancing! I got incredible drunk, with my yeovil girlys and had a generally great time.

I also went out last night, with the boys, I have to say this is a very buissy week for me, Iv been out loads sat, Friday night and again tonight. Well last night we went bowling, Me, Stu and a few of his mates, It was a great laugh, I'm awful at bowling but great at pool and kicked there asses. My lungs weren't so behaving and i couldn't stop coughing all night, feeling breathless alot and the whole bowling thing was quit hard work. But hey I still had a good time. Tonight were heading out for a Birthday party, I'm wearing my pretty pink dress again, which i love, but i don't think there will be any dancing or walk tonight, My lungs are a flemy mess, I spent all night wheezing and gargling, which made it extremely hard to sleep.

On a sad note, the 27th came and went, the 10th anniversary of my friends Debbie's death, she would have been the same age as Stu, 26, I had a little tear for her, but i know shes where she belongs, breathing easy and looking over everyone, A beautiful Angel.

Also another CF friend passed away last night, David Gilmour, David was on the transplant list but never got his call. It makes me so angry that we live in a society where we could save people like David by simply being organ donors but we don't and now hes dead. He was sarcastic and witty and a doting Uncle. I'm in total shock about his death, I don't know if he was any iller than usual. All I can say is i hope hes breathing easy.

Iv come back to edit this blog as i only just found out a women from my cf centre waiting for a transplant died on the beginning of january Denise, I feel so saddened by this. I didn't know denise personally but kept up to date on how she was doin and always had my fingers and toes crossed for her. And this is why I hate january, full of death.

My appointment is this Wednesday, I wish it was already here and i could stop thinking about it. Its not the actual appointment or the tests I'm dreading its what they'll decide. I hate the waiting, the unknown, I hate the thought that if I'm put on the transplant list its just more waiting. I'm not a very patient person and to have my life on a waiting list will simply drive me insane. But at the moment, I feel like I'm just in limbo, which is far worse, in limbo there is nothing. So I am waiting to wait.

My life the endless waiting list.

Saturday 22 January 2011

The letter has arrived

So since starting my Blog yesterday, I seem to have had quite a lot of traffic, whoop whoop. Thank you those who have commented, Its nice to know people are reading.

Well, I actually wrote that blog a couple of days ago but only got round to putting it all up yesterday.

So here's Yesterdays Blog, I won't be blogging every day, only if I think its something interesting and topic related, perhaps a little jibber jabber as well.

Me and Stu were both in bed, he had gone downstairs to pick up the mail and there it was, my 1st transplant assessment appointment, a few tests and a chat i believe, 2nd of February just over a weeks time at Harefield in London. Lung Transplant Is done in hand full of specialist transplant centres across the country, Harefield is my closest.

 Its all so close I feel a bit panicked now, who's going with me? Stu or Mum? Where do i stay? I can't do a day trip, Ill have to stay over night, the apps at 9:45 in the morning. Now i wouldn't say I'm lazy but I'm not a morning person, you see my lungs need time to wake, open up, let the morning treatments do there work, they can not and do not with stand a 9:45 morning assault. I will have to wake at 7 to be ready and there in time, I'm not even sure if that will fit all my morning treatments in.

So me and Stu had a brief discussion, basically he won't be able to make it he'd need a few days off and won't be able to get them, Mums happy to come with me, not that she has much choice. I'm going to stay at my Dad's and my Mum will stay at her friends.

So the other things I'm worrying about, the main one, am i to well. You would think this wouldn't worry anyone and that being to well is a good think and it is, but if I'm to well now, the way my life is, then what on earth will it be like when I'm not. I don't want to use the word desperate, but I'm closing in on that, i have so many day where I'm desperate for change, for health, just for that well feeling. Where my bedroom walls seem just to familiar. I need this, I need my life back.

I'm sick of my Mum having to come over all the time to do stuff for me, or drag me out of bed because i just don't have the energy, I'm sick of Stu waiting on me hand and foot. I don't want my Mum and Fiance to be my carers just want them to be my mum and my fiance. I want to contribute more to there lives then hospital visits, medication, stress and heartache.

I then had to ring my nurse to let them know I have the letter, they want to know whether to start me on IVs now as I'm feeling bad already, but I don't really want to just yet, I do feel ill, tired, very breathless, lethargic and alot of temperatures, but I'm not at my breaking point yet. I know its silly saying that but i feel silly starting IVs unless I'm really indeed of them, plus iv only been off them 9days :-(. My nurse said I need to go up to Harefield in a reasonable state, not on deaths door, which i know is true, but I'm just not ready yet. Hey I'm even planing to go out tonight, for the first time in ages, possibly even a year, i can't actually remember. So I can't be that bad. So i will wait till after the weekend, if i can at least draw it out till Thursday then that's a whole two weeks.

Well Thanks for reading.

Friday 21 January 2011

Lets get you up to speed

Everyone always said I should write a book, my life is interesting full of twists and turns, trials over tribulations. But recently My book just got to full. It just wouldn't fit on to paper. I guess I just got so interesting that I did a 360 and became uninteresting. So I'm not here to tell you my life story, I'm here to just tell you a small section, Transplant referral.

My names Kirstie I'm 21 and I was born with a life threatening Illness Cystic Fibrosis and lately CF has over taken everything and i feel my life being stolen from me, see I'm an energetic, fun, ambitious person. I take chances and risks. I work hard and play hard. I live my life to the full. Or at least that used to be me. Now I'm sluggish and tired, The risks i take are getting smaller as the consequences are getting bigger. I still work hard but am punished by my body every time i try. I definitely don't play anymore, as i simply don't have the energy. My lungs have been ruined by CF and its friend peudomonus (the bugger that's harbored up in my lungs) Every day I wake up and life is hard, I suffer from constant chest infections, I feel ill all the time, I have a whacking daily treatment, of nebulisers to help shift mucus, open airways and kill bugs that are damaging my lungs, physio, to cough up the flem that's clogging my airways, Pills upon pills, to digest food as my pancreas isn't at full capacity, to stop the burning acid reflux, vitamins because I don't take all the goodness out of my food so I'm missing vital vitamins, 4 daily injections of insulin as I have cf diabetic. Food supplements, as I'm underweight, partially because i don't absorb fat out of food partially because my body is working so hard to fight infections and keep its self running i burn of calories very fast. For those of you who think this is ideal, the wannabee skinny minis out there, its not, imagine feeling so weak you can't do anything and you have to stick a tube down your nose and into your stomach every night just to keep your weight where it is, you don't gain weight and feel so weak because your lacking vital nutrients to run your body and no matter how many pies you try to stuff down your face, until you feel really sick and the acid reflux is rising in your throat from the bombardment of fat, but yet the scales never acknowledge this. This is also really Important for transplant referral. If i don't have a BMI of 18 then i will be refused from the transplant list, mine is currently 17, that's pretty good for me, but not good enough.

Transplant was brought up a year and 3months ago for me, I'm very precise on that. I can remember it clearly, I had been having a bad time with infections, not being able to walk anywhere in a long while and had had a couple of bad infections and hospital stays. My doc said what do you think about transplant? I knew transplant was a very real option for people with cf when there lungs become to damaged that there seems to be no turning back. I viewed transplant very much as a end stage cf thing, that's a term we cfers use when your getting to the end of the road and death only round the corner. My first experience of transplant in cf was my friend Debbie, I feel i have to include her in this, so people can understand my
thoughts and fears of transplant.

Debbie was an amazing girl, i knew her most of my life, when CF patients mixed openly as there was no worries about cross infections, we saw each other in clinic often and had many hospital stays in Hillingdon hospital on the children's ward together. Debbie was 16 when she was asked if she would like a transplant, she was dependent on oxygen full time, her life was very limited, staying in hospital most of the time. I was only 10 and had been living in Devon with my family for a few year and away from Debbie although i was always kept well informed on how she was doing. I was in hospital at the time, when my mum said, i know your going to be upset but don't be Debbie is on the lung transplant waiting list. I remember howling into my mums arms, so worried and frightened for my friends life, i knew it was hanging in the balance on that one call. I don't know how but at the age of 10 i understood the full gravity of the situation. The next I heard Debbie had received her call in the beginning of January 2001, I was happy but still so nervous. Then My mum came into my room on the 27th in the evening, i already knew, i said its Debbie isn't it, my mum had a good poker face, but i just knew there was something wrong, she had died that morning. I cried and cried and felt like my heart would burst, to describe her as the most beautiful person inside and out would be an understatement, but she was gone and that was my first experience of transplant in CF.

So as you can see, not much positivity for me to ride on. At the age of 10 something that i knew could have been amazing for Debbie if it had worked out, but to me it was just something that robbed me of my beautiful friend. Here my doctor was suggesting i was in a position to thing about it. I was no where near as ill as Debbie and thought the idea of me being at all ready for that sort of thing was absurd. I could feel my eyes steaming up and just thinking mum please don't hug me, i will just cry if you do. He explained that he was just worried that if they didn't start the process which was so long and drawn out the we could be left with little time to sit and actually wait for those all important organs. I had previously thought that when it comes to transplant i will be tired of this whole thing and ready to just sit back and i guess let death happen. That i didn't have the strength to go through what Debbie did. But here i was not confined to a hospital room very much still with the fight in me and not ready to sit back and let this happen to me.

He said there didn't have to be any decision today, that i could ask as many questions as i want and that if i said yes at no point was there any obligation for me to go through with it, i could be on the operating table about to be put to sleep and say no.

So I then went away, I told my partner Stu about the conversation but decided to keep it all to myself for a little while, as we still believed that perhaps i could pick up an little. I went away and I talked, I talked to the cf community, I talked to people on the list, I talked to people who decided not to be on the list, People post transplant, good and bad, Because transplant is not a cure in some cases it can go terribly wrong, such as Debbie, or they can end up in a very similar situation as before transplant. I talked to several beautiful people who then went on to die on the list, never receiving there organs. I morned the deaths, people i considered friends. I also talked to people who were on the list and had waited so long i thought there call would never come and then it did, i thought it would be to good to be true, but it wasn't. I then watched as the started to live again. In the mean time, i had several, good patches, not much to speak of, mostly a lot of time on IV antibiotics, some i did at home some I had in hospital, I was still running my business as a fitness pole dancing instructor, It was very hard and I very rarely had the strength to demo. Often taking a more vocal approach to instructing with my advanced students demoing moves for me. I cant remember when but i was in hospital and my doc brought up TX again, we had, had it mentioned several times, It was always floating around, with am i ill enough to be referred, am i to well, Its such a fine line that over step it by a millimeter and you simply fall off the edge. I simply said, when ever you guys thing I'm ready I have made my decision I am happy to go through with it. I wanted to be the person post transplant doing amazing things. Not struggling to get up daily, feeling life passing me by.

But still months passed by and i wasn't being referred, I went up to the royal Brompton, for a second opinion. Is there anything more we can do? They had a few suggestions which were put in to place on my next admission, I was on IVs every 2weeks now every time in between i would feel hopelessly ill, temperatures constantly, struggling just to get that breath in. The easiest time for me was when i was on IVs, having copious amount of nasty drugs pumped into me, there not easy going, side affects galore, itching your skin till its red raw, waking early to do a dose and not being able to go to sleep until the last ones done. But this believe it or not is when i feel the best because its definitely the lesser of two evils. So I finally came out with it to my cf nurse, i asked am i still to well for transplant referral. answer No. So that was it we started the process. I had simply come to the end of my fresh hold and needed to start the ball rolling.

The transplant referral letter has gone off now and I'm waiting for a appointment to go chat, then after we've chatted i have to have several tests to see if my body is strong enough to cope along with the rest of my vital organs then i will find out if I'm 1) ill enough to be transplanted 2) at the same time well enough 3) if i make the list

I hope you will follow me in my journey toward transplant and wait with me to receive those Lungs.