Media update

Media update.

Heres some links from the last few days

http://www.mirror.co.uk/news/top-stories/2011/06/22/brave-bride-in-desperate-need-of-life-saving-lung-transplant-makes-sure-her-wedding-goes-ahead-115875-23217945/

http://www.dailymail.co.uk/health/article-2006665/Bride-Kirstie-Mills-gets-married-just-days-resuscitated-hospital.html

http://www.thisisexeter.co.uk/Wedding-day-joy-brave-Kirstie/story-12807005-detail/story.html

Im also going to be on channel 5 in a week and a bit when I have the energy back to do it. Im also still filming a documentry that will be on in october about transplant and organ donation, on bbc3.

Im also looking at a few different magazine deals, I want to be in the most popular to maximise coverage, but im also pacing my self after been so ill.

My thoughts on a few things over the last few weeks

I just wanted to write a quick blog on some of the serious stuff I have skimmed over the last week or so. So I will start with Monday, 999 call. For me it was the most scariest thing I have ever been through. I don't wish to ever replay those moments but know with my lung disease it is most likely to happen again. My breathing felt awful all morning and had done for about a week, to the point where i felt unable to breath on my own. My lungs weren't expanding enough and all I felt like was I was suffocating and it wasn't peace full or painless. I felt like I was dying and It was not everything I was promised or imagined it to be. The worst of what happened was when me, my mum and my 2 carers were there and the ambulance was on its way. Something suddenly changed and I felt shere panic, I knew If something didn't change I was going to die. I didn't feel like me and everything felt all wrong. I couldn't keep breathing, I couldn't hold on, I could hear my mum screaming at me but I think suddenly I gave up fighting and that's when things became a little bit easier. The ambulamced arrived and we were stuck for ages on just how to get out the house, i couldn't come of bi pap as i couldn't breath on my own but I didn't have a portable one.

The next few days after that were talks of hows and ifs about the wedding, I know some hard conversations were had about me and I think alot of tears were spilt. Another little thing I have to clear up is yes I was extremely poorly but i wasn't resuscitated. This is also not possible for the future as I have a DNR (do not resuscitate) due to the severity of my condition now, if i was to be resuscitated I would be put on a ventilator and unable to come off it making transplant impossible and only prolonging my pain and suffering. I am still determined to get a transplant but I now I need these things implace as I feel I am walking such a fine line now.

So enough of that for now, I made it, I made it to my wedding. The day was truly amazing, I can't really describe how much it meant to me and seeing everyone there. My CF team literally did everything they could to get me there and make it as stress free and easy as possible. My little bridal team did everything for me including my mum and sister staying the night before the wedding in the hospital and having Chinese. Everyone was amazing. Mostly my husband, when I saw him i couldn't help thing how handsome he looked even though he was blubbing, I choose the best man for me ever. We spent alot of the day together, everyone says you don't get much time together on the wedding, but we did. Which im so glad about, as it was our wedding. Our day. The speeches really touched me, my Dad isn't the best at public speaking, he was so nervous, but his speech ment so much to me and i don't know whether it was just me but it was the clearest Iv ever heard him speak and what he said was important. My husband blubbed again, but did such an amazing speech, making everyone laugh as usual and his best man was also amazing. It was just the best day of my life. I wouldn't change a thing, all the little quirks are what made it unique and at the end of it all It was about our love.

Now, well I'm home, after a brief trip back to the hosp to make rest and get some more strength. I'm needing higher 02 now and waiting to get a portable bi-pap as I need it alot more now. I'm on a cocktail of stronger drugs, anxiety meds(to calm me and my breathing when your as ill as i am your body feels like its should be in a constant state of panic but that isn't very helpful), higher pain meds and if they don't do the trick im going back on the sub cut injection of meds. Its a little cannula that stays in your belly and slowly injected your meds over a slow period of time, via a mini pump.

I am on my honey moon now and I'm going to have a bloody good time.

Mrs Tancock

Hi everyone Heres footage of my Amazing day and a few key photos from friends and family while we await our professional ones.

What can I say, the wedding was amazing, everything I could have asked for and wished for and the most amazing husband. I feel so Happy to have had this day.

ITV footage of my wedding

Me and my sister Kerrie also my wonderful bridesmaid, my right hand lady

My two fabulous nurses, physio and old pediatric doctor. I wouldn't have got throught the day with out these 3 fabulous ladies, I owe them alot and Im sur they know how grateful I am for all the support.



Stu, Me my gorgeous Mum and her wonderful partner Ash




Stu, Me, My lovely Dad and his lovely wife Nicky



Us and my new amazing In laws



Me and My big brother Chris

 Im not going to say much more now, as im still extremly tired and back in hospital recoping after being allowed a night at the hotel. Thank you for all you messages.

999 Panic !!

Well where to start ??  you will all be expecting this to be Kirstie, but instead me Kerrie , her big sister is writing this blog as Kirstie is to poorly .
Monday morning started as usual, the begining of an exciting week as it was getting close to the "big day", I left the house to go pick up my bridesmaid dress from sidmouth, no sooner did I get back in the car, my phone was beeping, I'd missed a call from mum! playing back the message my heart sank as I heard my mum telling me that kirstie was bad, really bad!
Mum had had a call from one of Kirsties carers, explaning that Kirstie was struggling and was unable to come off her bipap, so mum made her way round to Kirstie as quickly as she could. When mum arrived Kirstie was still struggling, so an ambulance was called, whilst waiting for the ambulance Kirstie found it increasinly hard to breath and had started to turn blue.
By the time the ambulance crew had arrived Kirstie had a heart rate of 180 and sats in the 80's whilst on oxygen and her bipap, she was taken by ambulance to exeter hospital and has been kept in on HDU on a concoction of drugs to try to stabalise her, the main aim of this is to keep her well enough for the wedding on Thursday!
Tuesday morning yet more bad news , as we where told Kirstie might not be well enough to travel to to the wedding venue, after disscusions with the doctors, it was decided that they would be able to get kirstie to the venue, we just had to extra careful and have a plan put in place if anything was to go wrong!
So here we are on wednesday the night before the wedding, and instead of kirstie being in her lush hotel room, me my mum and kirstie are sat in her hospital room, not the best place the night before the wedding, but by far the most safest place right now, we have made the most of it and had a yummy takeaway, followed by strawberries, now all I can say is its time to rest ready for the day ahead.
love u sis soooooo much xxxxxxx

Wedding

In the run up to the wedding I'm finding myself increasingly bizy, there is always little things to do and you soon run out of time, being a not so healthy bride, doing all the little things is really hard. I'm worried It will get to the day and Ill have forgotten something, let alone the worry that I will be really sick. Not only am I attempting to walk down the aisle but I have to come down the stairs of the balcony next to my room and then make it to the aisle. Its a fair distance. If I can't make it Iv decided my dad might just have to literally give me away by carrying me up the aisle first. Lol a sight to see. Iv been told all brides virtually run down the aisle and its far to fast and not in time with the music, at least I won't have that problem. I am going to pace pace pace and before I attempt all this I will be resting on my bi pap for all of the morning.

Also in the run up to the wedding ITV and Documentary team are filming me, ITV west country are keeping updated with my story as they have followed me from the beginning when I went to Harefield for my assessment and hopefully after when I get my transplant. Also the Documentary team are really keen to film all wedding related stuff. Needless to say this is very hectic and I do wonder how I'm coping in doing it all. But It gives me purpose and drive and I feel that's so important at the moment. I just hope it all pays off and people sign the organ donor register.

No wedding related stuff, my peg looks like it will be going ahead, no weight gain at 50.6kg and I just can't keep food down between all coughing. I'm really finding the thought of food most of the time almost repulsive as the feeling of anything in my stomach leaves me bloated and struggling to breath as it pushes my lungs up and squashes them, which also leads to me vomiting. I sometimes get a hunger on and when I do its really nice especially if i manage to not feel sick and bloated. A rare thing. Also in clinic my resting heart rate was 150, i felt very shaky and I get this alot. I hate feeling shaky. Otherwise all conversation was on wedding related things and how to keep me as rested as possible as there worried I'm going to run off adrenaline and burn out in the days after, something I'm pretty sure will happen. Oh and benefits, well that has got no where, more forms and frustration.

Past your sell by writing date

Are you past your sell by writing date? I seem to be leaving it to late to blog and the words have disappeared. I have a few fabulously worded blogs in my head but I have left it to late and the words don't flow on to paper in the right order. Usually I am just to tired at the time, to physically exhausted to try and put my thoughts to paper. Thoughts that I want to get out there, but just never seem to be in the right frame of mind to write them.

My Dad and his wife Nicky came down this weekend, he had to have a suit fitting for the wedding and therefore an opportune time to spend time together. Its only when I see my Dad I realise just how much I miss him and Nicky. My relationship with my Dad has not always been the best, I spent 4 years being stubborn and not talking to him. It feels so silly now 4 years wasted when I might not have another 4 years to waste. It was defiantly both our faults though, but it doesn't make it any easier. It upsets me quite alot when I think how close I am with my Mum and Nan, I have such an amazing relationship with them, they are my support system and they know me inside and out and I am so blessed to have had such a fantastic relationship with them, but yet Iv had such a distanced relationship from my brother Chris, my Dad and Nicky. I just want more time with them and I think that will be my biggest regret in life if I don't get this transplant, because I do get on with them so well, it unreal and I love them sooo much. It makes me wonder how this distance was ever really there, but I do know why, something I can't talk about on this blog as its such a horrible family trauma, Its not for me to share. But I blame that for any rifts and faults in my family and like I say I love them so much I just hope I get more moments like the weekend, simple, nothing ott, just about being together and sharing each others company. I think that about somes up what I wanted to say about them and I hope if any of my family read this which I'm sure they will, I want them to know just how much I love and care for them.

Today I had clinic, I am very tired, my lungs are going down hill, shere exhaustion seems to haunt me every corner, but I can't seem to nap, not that Iv had much chance. I did lung function today it was its lowest recorded point 16% fev1 and 17% fvc I know Iv had lower, probably only 10% before, but I was simply to ill to do lung function then. Seeing the figure, its scary, I can simply look at them and wonder how I am even breathing, but I know I will carry on breathing with these mouse sized puffer.

Something I was thinking about this morning in the bath, my legacy, I think we all want to think we will leave something behind and I remember when I read Eva's blog, she was a bright light for many CF sufferers and she had a double lung transplant but suffered chronic rejection and unfortunately died, Eva Knew she was dying in the weeks up to her death and she wrote and talked of leaving a legacy. She did. I hope I can leave a legacy like her and in so many ways I draw inspiration from her and how she created such a whirl wind in her path. Will people remember me? Will I be forgotten easily? I just want to know Iv changed the world in some small way, leave a lung shaped stamp on this world. To read Eva's blog please click here. So on the subject of legacy and changing the world, I had  sign today that I was, a girl I use to travel on the school bus with is now school teacher and she talked about me during a R.E class of year 7, she has talked about me and organ donation and she also talked about me in terms of my perception of god and dealing my own mortality here is what I wrote

Well Interesting question really, I would be happy to answer. I think as a child CF I couldn't understand that god would do something like this to someone so I shunned religion and buried the Idea that god existed, because how could anyone suffer so much if theres a God, right? But on growing up and becoming more mature, I was always interested in religion and found each individual religion interesting and wondered what one was true. I think now I'm as ill as i am and I have to face my mortality, I find it extremely hard to comprehend that there may not be a God, that there is nothing waiting for me on the other side, I won't Breath easy, a phrase people use with CF when some one with it dies. Breath easy, Iv had so many friends die with CF, Its a great comfort to me that they are now breathing easy, the suffering is gone. I have to have faith that there is something out there, a place of peace. I know that if I don't get this transplant then ill defiantly be finding out.

I received letters and card from them today, I liked to think that that means I have implemented a small change on the young lives and that they understand what a illness like CF is, how important organ donation and how faith is important, not any specific faith perhaps but just believing that something is out there for us all a place of peace because I think it can be desperately lonely in times of need thinking there is nothing.

So I think that is it, a long and thoughtful blog indeed.