Wednesday 28 November 2012

Tummy bug, birthday, Neil's transplant

Well I have a few little updates. Just over a week now iv suffered from a stomach bug, it has been hideous, I have such a sensitive tummy anyway that it's really messed things up in there. I had some extremely high temps, faintness, sickness, diarrhoea , extremely bad stomach pain and general aches and pains. Im so glad to say the bug itself has now cleared up but Im still really weak and suffering badly from faintness, iv been to the doctors a few times this week having bloods done and they have taken really good care of me. Each time though iv had to be laid down and my legs elevated as I was so pale and faint. I'm just trying to build up my strength, resting but trying to do a bit more each day until my body gets used to it again.

My white cell count has dropped even more due to this bug, it was already low, at the moment there keeping a close eye but any lower and I have to go into hospital and have all my medication changed to get it back up. Having your white cell count to low means I'm to immune systems suppressed and if I were to catch anything else I would be extremely vulnerable.

With being so ill I've had a lot of panic attacks, this feeling of weakness has taken me back and has scared me a lot. It's not like me to have panic attacks.

It was Stuart's birthday yesterday and we did venture out for a couple of hours but that really took it out of me for today and we came back after finding out my white cell was low as I didn't want to risk being In crowds. We had a great day chilling out together and even that's a rarity these days with Stuart's work. So we thoroughly enjoyed just being together, well I certainly did. I love my hubby very much and find myself missing him all to often with the hours he works, hopefully that will get better soon! Stu was 28 yesterday and I found a grey eyebrow a few days ago :-D he he age doesn't scare me I find it encouraging, every year he's older I am to and therefore we are a year older together.

Today I had a text message at 2am, I didn't open it till 5am when I saw it there, it was from one of my greatest and best friends Neil. A guy I call bro. He has cf and he finally got his call last night! He pushed me around when I was in a wheel chair and I tried to do the same for him after my transplant when he got sicker, he was to stubborn and walked even though he was struggling. Neil was so sick recently he was in itu and I have to say I truly thought we were going to lose him. I don't know how I would have coped with that. Neil is now in surgery, today is the first day of the rest of his life. I hope my bro just gets the chance to live his life and do all the things he wants to, something he's never really been able to do. I'm so grateful to the person who gave him that chance, who signed the register and gave the greatest gift you can give, I'm grate full to there family for what they have done in such a tragic time and wish them all the love and strength in this horrible time. Thank you for saving my brothers life. Neil still has a long road ahead, so please with him a smooth recover and that he is home by Christmas with his little brothers and sisters so he can enjoy his favourite time of the year.

Im going down to Harefield Friday with a present for another friend who's had a extremely rough time and hope to see Neil. If I'm given the all clear from infection control as I would hate to jeopardise either of there recoveries.

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Wednesday 14 November 2012

Mulling things over.

I haven't really got the words to blog at the moment, a lot has gone on and at the same time not alot too. My mind is ticking over and I have nothing interesting to say. I don't want to leave my blog empty and people wondering where I am, so I just thought I would say I'm here, I'm thinking, contemplating, being indecisive and mulling over things. Something is not right, something has got to change in the world of Kirstie...I'm just not sure what, until I do and until my mind is clearer I may not have anything interesting or thought provoking to say.

Monday 5 November 2012

Where did the sparkle go?

This goes back to the days before I had a blog, I have many notes like this, updates I would write On My Facebook. I wrote this before I was listed, when my life was slipping away form me, it was just before I asked to be assessed for transplant. In a bad place, desperately clinging on to a life that had already decided I did not belong.


When Your ill its quite easy to lose sight of everything you've become consumed in self pity, anger and most defiantly jealousy. These things slip in so quietly you dont even know there there until your a miserable bitch and you feel like a drain on those you love.

Iv lost my sparkle, Its most defently gone. I dont know when, but i miss it so. I had a brief re encounter with it the other week when stu took me out to dinner and it was great, i felt happy shiney and like people were seeing me for me instead of the sick ill person iv become.

How do i get it back? Well i really don't know, my first awnser to anyone else would be to get rid of what ever has made you lose your sparkle, but i have no escape from my situation, Im trapped in my body which is sucking all my sparkle away. What makes me so angry about my situation is i try and try to make myself better, do all my treatment, religiously. But there is no escape, they only minimise symptons slightly im still really ill and its not making me better. God damn it. Jelousy comes in watching others running around having so much fun, the snow to me has been like a weight around my chest, i cant go anywhere do andything, Im stuck. Im stuck most of the time anyway as i feel to ill to go anywhere but now im truley stuck. The jealousy is there all the time with everything, im the smallest of gestures and how people take them for granted, say walking your dog, cleaning your home. I simply cannot do these things, i do them with the upmost effort and struggle. There is my jelousy. Its so ugly, I dont wish to take things away form people, but i cannot help the jelousy creep in. Lastly self pity, I hate that most. I hate that i pity myself, i pity the situation im in that is all i can say on that one.

I need to try and bring back the positivity, the light that i felt i used to shine, I will. It will come. I just dont know how yet.

I finish this, note not wanting to sound sad, I feel positive and happy, Iv written it down, its gone from my head so i can stop dwelling and move on to making it happen.

I have to say I didn't feel like this the whole time I was listed, but there were so many shadows where I was it was easy to fall In to one and get lost. Some say the sparkle was still there, I guess it was just so hard to see In
the shadows. I certainly didn't feel like a shining light.

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Thursday 1 November 2012

A guest blog from Mel the director of 'love on the transplant list'

This is a blog Mel the director and producer of 'love on the transplant list' wrote for the BBC which she gave me permission to use. Me and Mel got very close whilst filming, she came into our lives to film the documentary but she will remain a great friend of mine and Stuart's and our families. I'm happy to say we also attended her wedding in August so as she was such a huge part of our special day it was great to be part of hers and her husband Sams.

At Special Edition Films, we got in touch with Kirstie after seeing her blog 2ndchance@life to approach her about making the documentary for BBC Three about her experience.

As the producer, Kirstie made it very clear to me from the start that she wanted people to see what it was really like to be on the transplant waiting list.

She hoped that by showing the reality of her situation it would encourage more to sign up to the donor list.

In May 2011, when I first met her at home in East Devon, Kirstie had seriously bad, end stage lung disease where a transplant was her only chance of survival.

Kirstie was already on the transplant waiting list and had been told that she only had six months to live.

The documentary starts with Kirstie and her fiancé Stuart three weeks before their wedding day and although Kirstie was living at home at the time, she was on oxygen machines 24 hours a day to help her breathe, confined to a wheelchair and having constant IV's and pain medication.

She was barely able to stand for a couple of minutes let alone plan a wedding.

Our whole crew consisted of an assistant producer and me - during the ten weeks of filming, this amazing young couple battled everything to live their life to the full.

We followed Kirstie being hospitalised and fighting for her life two days before her wedding, even checking herself out of hospital early to make it down the aisle.

A couple of weeks after the wedding you'll see how Kirstie was still so thrilled to finally be married before the sudden shock of having to be taken by air ambulance to the transplant hospital in London, knowing that if she didn't get there right then, she would never survive the journey.

It was an extremely emotional time in this couple's life that as a filmmaker I couldn't help but be affected by.

Each time I filmed with Kirstie I was acutely aware that this could be the last time I would ever see her alive again.

Watching Stu talk about how it felt to be in a situation where the person you love is dying and there is nothing you can do to save them, is something I'll never forget.

Kirstie's husband Stuart waits for news

Filming with Kirstie and her family when they were going through such a painful and highly emotional time put me in an unusual situation but I was very privileged to be able to follow their journey and they were extremely supportive.

Her drive and determination made it much easier to talk openly about difficult issues such as death and living with illness.

Choosing the music for the film was always going to be an extremely important element for me to help add a layer of emotion and try to reflect what everyone was feeling.

Throughout filming, I was constantly listening to albums and almost creating a soundtrack in my head as I saw the events unfold in front of me.

In the edit I found that if a track made me completely re-live the moment then that was the right one to use.

I quite often wouldn't listen out for relevant lyrics but literally watched through footage with headphones permanently attached and when a track had absolutely the right feel to it I would play it back and realise that actually the lyrics added to the scene.

Some of the tracks used in the film were personal to Kirstie and Stu, in particular the Take That track which was played as Kirstie walked down the aisle and I'm Coming Home by Diddy Dirty Money feat. Skylar Grey which Stu played to Kirstie when he was finally able to take her home from the hospital.

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