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.


  1. Hey burrrrd...... You have an inner strength most only dream of.... I will be following your progress chica and keeping fingers crossed xxx

  2. Congratulations on being my first comment :-) not that iv been sitting here waiting for someone to comment of course :-/ lol

  3. Hey kirstie, I can't wait for your next entry, you really put a lot into this 1 and its such an interesting read. I hope your assessment gets you onto that list! Xx

  4. Fingers crossed for u Kirstie x

  5. Hi Kirsty, my name is Oliver and I have just read your story after being asked to by my friend Andrew Ward, just to educate myself a little more on CF. I can tell you are an extremely motivated, brave and well loved individual, much like my very good friend Dan who also has CF, and I wish you all the best with the transplant and your health and look foreward to reading more as events unfold.

  6. Hi sound a strong and determind young lady..I followed a young American girls journey through a second transplant..she was an amazing person,and made it through.I will be honoured to follow you along that road.Please god it will be son has cf he is 45 in may.I pray your journey will be over soon and we can all celebrate your new breathe easy life <3 stay strong <3

  7. Hi kirsty, I know so about you because of Elly even though I only met you a few times. I promise its do what I can to make sure as many people are aware of this as possible, not just for CF but for everyone facing illness with the courage you have, and especially those who lack it. Take care, I hope you get your call x sarah x

  8. Hello Kirsty !!
    Thanks for sharing your life and Congratulations for the way you are taking your experience.
    "Being relaxed, at peace with yourself, confident, emotionally neutral, loose, and free-floating- these are the keys to successful performance in almost everything you do."
    God bless and be sure you will get a healtly and stronge lungs from a beautiful soul :-)) Elizabeth XX

  9. Kirsty you are an inspiration to everyone!! My 7 year old as CF, he is not too bad at the moment, he as is chest infections and as to take has daily anti-biotics and vits etc... i worry about his future though, he;s such a loverly lad. Hope all goes well for you. Adrian x

  10. Hi Kirsty, just read ur blog, ur such amazing girl, ur story is so moving, cf is a cruel disease I hope that all goes well for u, you'll b in my thoughts & prayers xxx

  11. Hi Kirsty, you sound like an amazing woman i have a 16 month old daughter with cf and worry so much about her future as she is already quite ill, and i just hope she can fight this disease with as much strength and determination as you appear to have, good luck and i hope all goes well x

  12. Hi Kirsty,
    Just read ur blog, u r such an amazing person ur story truely moved me, I'm Stuarts cousin actually and I have a little girl called Millie who is currently on the transplant list for a small bowel and I understand ur anxiety and worries fully, I look forward to following ur journey and hope and pray that it's not a long wait for us!!
    Love to u all
    Emma Sandford xx

  13. I have to admit I only heard about you through the russell howard show, but it touched a nerve for me, a good friend of mine has CF and I worry for the day he has to take the journey you are on now, but reading your blog, brings hope to, so thank you <3

  14. Hi lovely Lady
    We have had some great new today neice Georgina has had her 1st visit to Harefield today and has been told she is a perfect candidate .....reading your blog has given us so much hope and encourement that there is light at the end of the tunnel ....thank you so much for helping other sufferers through this journey ....wishing you so much love and respect .....and we pray that our story has the same wonderful ending ......