Hospital packs and a update

Iv already written this blog so annoyed it's not here anymore!


The hospital packs I made were sent out last Friday. Iv had lots of feed back from the recipients so here's a few picks and comments from the winners.



























The above pics are from Robyn Toseland here's what she said about he packs.

Today the postman delivered the most wonderful gift, & I am completely & utterly overwhelmed!

The lovely Kirstie Tancock has cystic fibrosis, & recently had her second double lung transplant. She is absolutely amazing, & even though she is still recovering from her most recent lung transplant - she continues to do all that she can to put a smile on the faces of others suffering chronic illnesses.

Whilst I was recently in hospital, Kirstie asked people to nominate those who may benefit from a 'hospital survival pack', which she has spent months putting together with help from local businesses. Little did I know that the lovely Angie Bruns, nominated me for one!

At the end of last month, I was discharged after 17 days in hospital, & came home to find a message from Kirstie to say that I had been nominated for a survival pack, & that I had won one!

I was so shocked & couldn't believe it - & didn't actually believe it until it arrived today! I'm completely overwhelmed & feel so incredibly lucky! I opened the box with tear filled eyes! I literally can't believe that someone felt I was worthy of such a wonderful gift! I really don't feel that I deserve it, but I am truly forever grateful! I have the biggest smile on my face today, & can't stop looking at my wonderful goodies! I'm currently wrapped in my gorgeously pink & fluffy blanket, & am absolutely loving every single thing! Even better, is that there are loads of pink things - which is totally amazing! There's lots of chocolate too, which always makes everything better!

I find it really hard to understand why someone thinks I'm worthy of something so lovely - something which will provide a little light, during the darkness on super poorly days! I can never understand why people sometimes say that I'm "brave", "amazing" an "inspiration", because in all honestly, I feel that I haven't handled my health issues in a way that I should have - there are times where I just didn't know what to do with myself, or how to move forward. Crying into my pillow, thinking that it's all so unfair! I have my dark days, & sometimes wonder "why me?", but then I think, why not me!? I'm not anyone special, & my poorliness can't be helped. It will be, what it will be! It would be so easy to be angry with my body, but I actually think it's pretty incredible for getting me through two life-threatening events - a massive bilateral pulmonary embolism with substantial right heart impairment in 2008, & then in 2011, a retroperitoneal haemorrhage in which I lost six pints of blood. It is unfortunate that I continue to suffer the consequences following the damage that the blood clots did to my body & my heart - but I'm still counting my blessings! It's times like this that I realise how lucky I am, & how truly privileged I am to have so many wonderful people in my life! Feeling very special right now - I'm so grateful to you, Angie, for nominating me! I really do believe that "only in the darkness, can you see the stars!"

I literally can't thank you enough, Kirstie. Your kindness, compassion & determination to help others, is completely inspiring! I'm so overwhelmed & truly touched that you felt I was worthy of something so wonderful! A million pink thank you's to you, & to everyone that helped you put the amazing 'hospital survival pack' together. You've made me the happiest girlie! Your amazing survival packs will totally make poorly days a little happier! I'm now ready for anything that my health may throw at me, & can inject a little pink into every hospital stay! During my recent hospital admission, the nurses called me "pinky" & "pink princess", so everything in the pack lives up to my hospital nickname perfectly!




This is Gemma fearing with all her goodies.

Sadly one of the recipients didn't receive there pack. My friend Gerard who helped me thro chronic rejection and radiation passed away. He was a great friend and a fellow advocate at live life then give life. I couldn't help hi the way he helped me and I hoped the pack would help make him more comfortable in his last few weeks but it wasn't ment to be. I'm thinking of his family at this time and hoping he is breathing easy.


These packs have given some very ill people a small bit of happiness and I'm humbled that I could give that to them. The message of these packs is not only to make them feel happier in hospital, to bring them some luxuries and comfort. It was to let them know that in there darkest moment people are sending them love, thinking of them and hoping they get better. To let them know they are not alone.


I hope to do these packs again next year towards the end of the year. £1100 was raised for these packs, thank you to those amazing people who donated money and others who bought and sent items for them. Without you this wouldn't have been possible and I know that some of those people donated when I was extremely ill and I can tell you it kept me occupied in that time and made me happy knowing I was helping others. So from the bottom of my heart and from all those who received a pack thank you.

A little update on myself, I'm back at work in the admin department and doing over time on the shop floor. It was hard at first but iv settled in and feel happy now although at first I felt overwhelmed and not ready. Most evenings me and Stuart have been decorating our new house that we bought! My dream come true. We have ripped out carpets, painted and worked hard and now our house is our home. I feel so comfortable here, happy and relaxed. It's like it was ment to be my home. Were still doing stuff but have now moved in. It should be ready for Christmas. Here's a picture of the living room.





Also in November I won pride of Exeter hero of the year award here's a video of what winning ment to me.

http://www.exeterexpressandecho.co.uk/VIDEO-winning-means-Pride-Exeter-award-winners/story-20086591-detail/story.html





And finally a few photos I had done for some modelling back in October
































Oh and a artical in the daily mail and daily star on me and Katie gammon.

http://www.dailymail.co.uk/health/article-2525174/Best-friends-dying-lung-disease-receive-life-saving-transplants-DAY.html


I will be blogging again soon x
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Hospital survival packs

So the hospital survival packs nomination period is up and those who will receive a pack have been contacted and iv also attempted and think iv succeeded in contacting those who haven't been successful this time. I apologise if I have missed anyone. I have to say I got so much response for the packs although there were very few men nominated, I wonder why that it? Everyone who was nominated deserved a pack and I'm just sad that I couldn't give everyone one. The best bit of this project has been emailing those who will receive one, there reactions have been priceless and that what I set out to do, to create a smile when there might not seem like many reasons to smile. That makes my heart feel happy. Will I run another project like this one? I defiantly think so, into e new year after a few months I may start the whole process again, but I will wait till I have some spare time.

I also want to thank all those who nominated someone and please don't hesitate to nominate them next time.

I hope I will be able to put up some picture soon of people enjoying there packs!

I will write a update on myself soon, but all is pretty roses and life is not only back to where I left it before my chronic rejection but things are progressing nicely.
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You can never say thank you enough

Video blog
Thank you x
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Hospital survival packs, nominations here

A while back now I told you of my latest charity endeavour. Hospital survival packs. They are now ready to go out and I'm ready for nominations.

Firstly the idea of these packs is to brighten the dark boring day in hospital, to relax and pamper you when your not feeling your best.

So what do they include? Here's pictures of the women's and mens pack there will be 10 I'm all to give away.




The women's pack;
Cushion
Fleece blanket
Sleeping eye mask
Bomb cosmetics gift pack including- Love Soaked Dreams Soap Slice,
Crazy After Dark Bath Blaster, Hello Ducky Bath Creamer, Foam Alone Bath Blaster, Herbal High Body Lotion
A travel wash bag
Johnson's face wipes
Medicated lip balm
Dead Sea face mask
Court worlds lavender pillow most
Relaxing massage oil
2x batiste dry shampoo
3x mini tooth pastes
Tooth brush
Paint by numbers
Sketch pad
Drawing pencils
Crayola colouring pens and pencils
Note book
2x mosaic coaster kit
2x mini cross stitch
Decorate your own mug
Creat your own sock teddy
Mini game
Heroes chocolate collection
Lindt desert chocolate collection
Haribo super in
Haribo tang tastings
Amelia's chocolate
Chocolate coins
Walkers shortbreads




The mens pack
Cushion
Fleece blanket
Sleeping eye mask
Clinic mens skin supplies- shaving gel, scruff ing lotion, gel lotion, anti fatigue cooling eye gel, face scrub, post shave healer, wash bag
Johnson's face wipes
Medicated lip balm
Cotswolds lavender pillow most
Relaxing massage oil
3x mini tooth pastes
Tooth brush
Paint by numbers
Scrap foil
Airfix
Sketch pad
Drawing pencils
Crayola colouring pens and pencils
Note book
Decorate your own mug
Creat your own sock teddy
Mini game
Heroes chocolate collection
Lindt desert chocolate collection
Haribo super in
Haribo tang tastings
Amelia's chocolate
Chololate coins
Walkers shortbreads


Not all the items are shown in these pictures but most are.

So secondly nomination rules. If you think you or a loved one would like one of these packs then you can nominate yourself or them by commenting on this blog or private emailing me on kirstietancock@icloud.com I could like you to include your full name, your age (must be 17+) your illness/condition which causes you to spend a lot of time in hospital and if you could tell me a bit about yourself and your condition. Also please leave a email address so I can contact you if you have won.

You can have any condition/illness this is not specific for cf or transplant patients, the only stipulation Is that you spend a lot of time in hospital, these packs are created for people who are having a long admission or in and out of hospital. perhaps a rehabilitation from an accident or a life long condition.

Please share this blog, the more nominations I get the better so I can find somebody who truly needs a smile put on the face. The deadline for nominations is the 1st of December as I hope them to go out before Christmas.

Best wishes and thank you to all those who donates to this project, I'm so proud of it and looking forward to the smiles it will create.


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Is it ok to want more?

Living with cystic fibrosis I always thought as a child and teenager I would be ready to die when death came. That I would be tired of the fight for life and ready to role over and let death happen. How naive I was. Me and my best friend Lou were on our way back from London yesterday and while we were driving along we started to talk about my transplant, as I often do at the moment. It's my way of unpicking at the seems of life, rummaging through the memory's, deciphering the codes in my head left from the trauma of it all. Because when your told your dying, when your so poorly you can barely stay awake, your brain starts to loose pieces of information along the way. It's like it decides what it can deal with and starts to throw out all the other stuff until you are back on the road to recovery and then you start to find all these lost memory's.

Memory's such as ringing my nan and telling her I wasn't going to get a second transplant and I wasn't going to make it. Nothing can prepare you for that conversation, not even your delusions as a teen that when death came you would be ready. Starting to relive those memory's, it's so painful, so raw, it's like going through them for the first time because each time you remember something else and it's all new again, the pain slices through you and the tears sweep my face.

I can only just remember the howling cry of my brother, even as I write about it, it feels so fresh so new and I want to reach Into my memory and wrap my arms around him And tell him how it all turns out ok.

I still don't remember all those conversations I made to so many of my close friends and family that day. I wonder if they will ever come back, part of me hopes they will stay hidden. Am I ever ready to deal with these moments of pain. There are still things I cannot remember from my first transplant and i am sure if they were to come back to me they wouldn't benefit me in anyway, they are hidden some where in the deep fog of protection, possibly just dropped out of my brain forever never to be found.

There is something else I have learnt from this experience, not only am I not ready to die but I'm finally ready to live. Now this may sound confusing for everyone, iv never shied away from life or walked away from an experience to be had but iv never thought I wanted to live to be old, joked about the fact I don't want wrinkles and simply thought that 50, 60 or 80 sounds to old. Sorry for those who are that age, but being young those ages do sound so old to me. Until the penny dropped, stu said to me today about sorting out his retirement fund. My reaction was to well up, I want to be there! I want to be with him when he retires, sending him off down the golf club in the day while I natter away to my friend Lou and go to the spa or some retirement like leisurely thing!

This may sound selfish of me, it does to me. It sounds like I'm simply wanting to much and I should just be grateful for every day I get, god I promise you I am. Sometimes though I catch myself wanting more and hoping I never have to relive those conversations with my friends, not just in my memory's but in real life.


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Slight blip on the path to recovery but life continues

So Monday I woke with terrible chest pain, a sleepless night of tossing and turning and only being able to sleep on my back as the pain increased and felt like my heart had moved to where the pain was and pulsating through it causing me agony. Off to exeter hospital I trotted, I know any signs of symptoms of things not being right I have to get checked out due to my gastric/oesophagus issues and the possibility of refluxing into my lungs despite my fundo wrap. Also regardless of these issues anything wrong at such an early stage post transplant is amplified and can cause a lot more damage. I'm still shaken by my chronic rejection with my first transplant and so feeling very nervous about any little thing.

After a slightly fuzzy X-ray and a temperature I was transferred to harefield, put of tramadol for the pain and told I may or may not be bronched. Wednesday I was put on the emergency bronch list and starved all day for a bronch that never happened, but instead went ahead the next day. I dislike bronchs a lot, after waking up in agony from one with a collapsed lung.

I woke up still in the theatre, I usually wake in the recovery room, straight away blood came flying up from my lungs and most of it ended up all over me and some into a bowl. I hate it when you first wake after a bronch and those first few breaths feel really hard as they have been assisting your breathing through it, it like you've forgotten how to breathe on your own. That's how I always felt after using the bipap but 10 times worse because my lungs at that time weren't really sure how to breathe most of the time.

I was wheeled into recovery and continued to cough up a lot of blood, you cough up blood when they take biopsies, they always take biopsies with me now to check for aspirations due to gastric/oesophagus problems and chronic rejection. This particular bronch must have just caught a well perfused area as iv not coughed up this much blood since pre first transplant.

Later that day I was told that the bronch looked very clear and although there initial thoughts were infection there was no mucus in my lungs and it may be a virus which I seemed to have gotten over on my own. I would be allowed home as soon as my biopsy results came back.

Unfortunately the results didn't come back completely clear, I was told instantly that they were not at all worried and neither should I be. Easy for them to say but I'm still dealing with the emotional fall out of chronic rejection and being told I was going to die, so anything slightly squiffy worries me as i've said. It seems I have organised pneumonia, which I had as the very beginning of my chronic rejection and reflux issues. Organised pneumonia isn't a bug or infection as it sounds like, it's a immune response to something not quite right, it's inflammation in the lungs caused by the white cells, the treatment is a medium dose of steroids. Organised pneumonia is believed to be linked to reflux and the end of virus's or infection. So it could be from the end of my infection I have recently finished Ivs for or it could be a sign that my liquid/soft food diet and other precautions taken against reflux/aspiration is not working and either prof Hannah will have to have a rethink to see if there's any surgery he can do to stop it or I will have a peg fitted into my jejunum (small bowl) and be nil by mouth forever, the aim of this is to bypass my stomach so food doesn't reflux into my lungs. For now I'm on 25 mg of pred and I guess we will see if this helps and my lung function continues to improve and a biopsy will be repeated soon.

I remain worried, but obviously positive. I see myself as a very pragmatic person, a realist and there for will deal with this in the same way.

So now I'm back at my Nan's and life is continuing. Therefore leading me on to my good news and exciting week. Me and Stuart have made an offer on a house and it has been accepted! We are going to be home owns. This is a dream come true, I'm so excited that we got here, we made it all because of my two amazing donors, I will never forget them. Also it is nearly my birthday! I am so excited another birthday I didn't think I would make and there for feel it is slightly more special and a time to say thanks for all that I have. I cannot wait to celebrate the gift that is life.

Lastly I took my first walk for months with Kia yesterday on arriving home from hospital. It amazed me as I walked how effortless it was to breathe when before it was so hard, like every breath could be my last and how those tears ran down my face through pure fear, yet now I am standing here, walking without a single thought on how to breathe. thanks to my donors💕💕


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Recovering

I have had a short break from my blog, so I apologise to those who have asked for updates. The reason for my break was to take time to heal, reflect and recover. Although I'm writing this it certainly doesn't mean I have finished that process, post transplant recovery take months, some say your not recovered physically for about a year, emotionally I guess everyone is different, but I don't know if we ever truly recover from near death experiences although they do get put to one side and for us to carry on life in the most 'normal' way possible. As I said in a previous blog before my chronic rejection set in I felt the most recovered and 'normal' as I would ever get. Now my goal is to get back to that and rushing emotional recovery isn't something I would ever do.

So where am i now? I am out of hospital I have been for a week and a day, it's been 4 weeks today since my transplant, 4 weeks since some stranger once again gave me the gift of life, 4 weeks and some where there is a family out there grieving, please think of them and wish them peace and my donor rest peacefully in heaven.

I am at my nans with my husband while I recover and we look for a house, our first house to buy. It's so exciting and at the same time scary, it's such a huge decision when looking at houses whether we are going to pick the right one for us. I can't tell you how happy I am that I have such a normal worry such as buying a house!

Physically I am weak, but no where near as weak as I was the first time, but still I have a way to go, I am walking lots and sometimes I forget to rest in between, my mind thinks I can just go back to how things were before, my body is in need of time, but I know we will get there.

Finally I just want to take a minute to thank you, thank all of you who have supported me, helped my hospital packs in the last few months which will be ready to go out for Christmas. I have been buying lots of fun crafty things and exciting goodies for them and it has provided me with much needed distraction from myself and my own situation. I want to thank everyone who had donated to the packs and to the fund which my friend set up for me personally, I have no Idea what I will spend that on, but I will put it to good use. I also want to thank all the lovely people who sent me cards, present and simple messages of encouragement. These message in those hours of darkness brightened my day and on good days widened my smile. Simple things have such a great effect and I cannot thank everyone enough.


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Dreaming wire free

I'm still recovering well, it seems like things are all heading in the right direction apart from a old annoying problem cropping up. My stomach does many magical painful things one of which is switching it's self off. Last night was the second time it's done this in this recovery. I was withering in pain and actually got to the point where I just though god this is never ending, the itu anethatist was brought down and then dosed me up on morphine until I passed out. A happy outcome. It got to the point where even my nurse didn't know what to do and all she could do was hold my hand and reassure me I was going to be ok.

Pain, pain is such a provocateur of emotions, how it can make you feel like your world is crashing down in seconds and anyone who has the power to take it away is simply a hero. I felt I truly didn't know how to keep going last night, surely I wouldn't keel over from the pain but I didn't physically know how I could handle any more.

I continue to dream of life wire free, house hunting, doing my sports therapy massage course, teaching pole, getting fit and having dinner with my hubby.

I can't wait to be curled up in our new house when we buy this autumn, surrounded by friends, family and of course Kia. It seems so idyllic and small but so tangible and perfect.

I'm hoping to be leaving hospital this week for a family wedding, whether that's full discharge or weekend leave we will see. I'm currently down to two chest drains and one neck line. I long for a full bath or shower.


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Recovering well

I have to say I never thought four days after transplant I would be so well, so happy, so mobile.

See my recovery before was after a long decline where all my muscle mass was stripped from me, ecmo ruined my muscles my mind everything. It was a means to an end but a horrible one that got me to the other side in the worst shape possible. I now know more then every that a normal transplant where your in a good muscular state as I was because I had declined quicker this time, don't get me wrong my lungs were really gone, i had only a week or more left, but the muscle was still there and that makes such a difference. I believe in ecmo and think it does it's job well, but I want one day where people don't get that ill they have to go on ecmo, ecmo isn't how transplant should be. People should have this as easy as it comes because it's still hard then. Although I feel rather high on life, love and all the energy people are sending me. Thank you for you messages. Also a continuous thanks to my donors and love to there familys. my thoughts are always with them. Ill leave with a few pics for now and just this short blog. I'm off 02, out of itu, 2 chest drains gone, cycling on the bike for 15 minutes and moving really well. Also planning for home mid next week.
All my love blog readers, remember dum spiro spero = while I breath I hope.





Day I was told I was going to die in a couple of weeks, sharing a precious moment with my nephews, brother and sister in law to be.



Going to theatre.



2 days after.



Love



High spirits




Standing. Itu no 02'



On the bike on the ward. No 02.



Proper pjs and had a nice clean! No 02 and happy.



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Here we go again!!!!(Stu's update)

Ok this is unfortunately not Kirstie sending you this message but her wonderful husband Stu. Kirstie has asked me to pass on what happened today so you guys are up to date.

Well I'll start from Friday morning as Kirstie has already covered Wednesday and Thursday so mine should be a happier blog with less tears ( except for my dad.)
Started off as a normal day really nothing to strange from the last few days wake up go pee, drink, talk, watch TV and play on iPads and phones.
Visitors of the day were me(Stu) Kirstie's mum, Chris,Caz,Luke and Logan (Kirstie's brother and his little family) and also Lee (Kirstie's older brother).

20:40fri
After that not alot when everyone left me and Kirstie just chilled out on her bed watching TV, when we had a knock on the door to which a face appeared. I hadn't seen this face for two years so just thought he was working tonight and he just wanted to pop in and say hello. I didn't even registrar that it was Rob ( TRANSPLANT CO-ORDINATOR) so I just said "hello" he must of thought "twat". Which I was, he then went on and said its very early but we may have some lungs for you. I got up and started walking around the room in complete shock looking into my wife's eyes and knowing that we were both thinking ' already! That's crazy we only sorted this yesterday and now we are here' all I wanted to do was hug the guy as all he does is bring me good news ( he was the one who said it was ago last time ) be went over it was very very early and there are still tests and obstacles to get through first.

Once Rob left we just looked and said ' ok let's do this' we took the phones out and called the parents we decided it was far to soon to let everyone know as we were so far off. Kirstie then had to go on bi-pap as breathing became difficult because of the situation and she was struggling her mum came over later in the night as she couldn't sleep and waited with us for any updates on what's happening she was worried about Kirstie as she was visibly struggling and in the early hours we had to get more pain relief so she could get some sleep.

7:00sat
Rob came back and said everything was looking good even our biggest worry which was the anti-bodies, remember Kirstie's were at 80% which really put the odds against her. There was just the final checks and it would be all go. More phone calls to family letting a few more people know as we were getting close.

8:30sat
Ok it's ago 'your going down at 9:15' this was it phones out iPads going Kirstie wanted people to know she couldn't keep it bottled up any longer it was happening and we didn't have long. Kirstie got worse during this time her breathing was awful and it was defiantly time to do this. I guess for her this was her first time waiting going through the stages and waiting to go down as last time she was on ECMO and didn't have a clue. I was so happy for her this could give us more time together to complete her goals and fulfil her dreams.

9:15sat
We start the walk down to theatre we get there take a few photos say good luck give Kirstie a kiss then let them take her through.

That's it my mind now thinks about her previous donor and there family and the two years they gave to Kirstie and what she did in that time you all know so I won't go into detail, Im just praying that they know what Kirstie did and that they got Kirstie here, she really did do the donor proud she was non-stop in her goal to get people to be organ donors enjoyed life to the full and finally she had a bond with them one that I know played on her mind. She didnt want to let these lungs go they gave her so much she had so much respect for what they gave her.

I was also thinking about the current donor praying that they didn't have to suffer and thinking about the pain there family must be in I really have no idea how they are dealing with such a tragedy. I was in pieces after Wednesday and I still had Kirstie in my arms for a few more weeks. I'm so sorry for their loss and all I can do is promise you Kirstie will give these lungs the same respect and love she gave to the last. And thank you everyday for the great gift that they have given, we will also never forgot the last ones also thanking them everyday as without them she would quite simply not be here. Thankyou

22:30

So here I am now putting all this down after spending 10mins with Kirstie this evening, she was sedated and will not be woken until tomorrow and we have been told the op went well.
it was a long day of waiting checking the time and trying to answer messages texts and calls that were coming through. I didn't realise how many people follow her and the amount of messages she gets daily I know she try's to talk to everyone as she well loves to talk to people and hear there journeys and help people through there tough times whether it be patients going through tough times or family's watching loved ones struggle she always does what she can to help and she always gets upset when she can't.
I have so much respect for what she does and how she battles she has honestly changed my life for the better. It makes you realise the important things in life and makes you wonder what others do and some people's lack of respect for life.

So that's it all up to date any questions just ask and I will try to answer until Kirstie's back up and running then she can have this back not really my thing but I have been told I have to do this or I would get a slap. Trust me she isn't afraid to hit me given the chance.

Thankyou again to the donors and their family's as without I wouldn't be doing this right now. I will never go a day without thinking about you and thanking you everyday for your gift not just to Kirstie but to me and the rest of Kirstie's family and friends we are all very very grateful
Xxxxxxx

Stu



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Location:Harefield

'We can't relist you'

So yesterday me, stu and my mum sat while my dr, nonnie told us that there was no way I was going to be put on the transplant list and that they were arranging palliative care. I had only a few weeks left to live. We were devastated, my mum and stu were in tears and I was just shocked. This was based on my reflux test still coming back positive. We rung loved ones in tears and watched as our world fell to pieces.

Today we had another test, this time the team came and told us that the test had come back ok and although i still had reflux, they were willing to put me back on the list and would be able to do a emergency op afterwards to sort out any reflux but I would have to be peg fed to stop any reflux damaging my new lungs. I still only have a few weeks window for transplant as I'm so ill and unfortunately I have extremely high anti bodies of 80% meaning the likely hood in getting a match is very slim and there is no way they can bridge me on ecmo this time. So once we miss the boat it is truly missed and there's no more tricks up our sleeves.

This means palliative care is still very important but we have a chance, a small window of hope. They repeatedly said if anyone can do it I can! Please keep praying for me and hoping that this small window is all we need. We have had some desperate and devastating times in the last 24hrs. I am now using bipap when needed and unable to walk anywhere. Just to visualise how far we are into the rabbit hole already.


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Re transplant, palliative care medications

Things the last few days have been increasingly hard, I'm having some extremely hard times with my breathing, points where I feel I'm going to go Into respitory arrest and my anxiety levels have only made it much worse. I had an exercise test yesterday on 2litres of oxygen, of the 6 minute walk test I managed 3 minutes. My heart felt like it was going to explode and felt like I was going to collapse, my sats went down and my heart went up. So for walking I'm going be on 4+ litres of oxygen and resting I will remain on 2+.

Today nonnie my consultant came in, my breathing wasn't great but better then it has been. But she instantly noticed how bad it was, and said she could see the anxiety and worry in my face. I could certainly feel it. I was started on oramorph 2 days ago which has slightly helped, but as of today I'm going on to MST and also starting lorazepam all to help with the shere effort of breathing and to try and bring down my anxiety levels over it all. These medications all come under the palliative care meds. For me this is all very familiar in April of 2011 my conversations were very much the same, although I was already listed for transplant. Next week they will all discuss whether I can be re transplanted with the surgeons and the whole of the team. I think it's obvious I am on a slippery slop moving at a rate to me that is even faster than last time. We still have the hope that radiation will act as a stabiliser but I'm not willing to put all my chips in one basket and therefore feel the discussion for re transplant is very much appropriate now.

How do I feel about this all? I feel scared, I feel tired, Im praying it will all come right but again I find myself making lists of songs and poems I wish to be played at my funeral. Somewhere I know it will all come right in the end, how I'm not sure and that doesn't mean I will make it but I just know it will be ok.

Remember where there's life there's hope!


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Sleepy girl

Radiation is exhausting! I feel very tired most if the time, I always thought it would be quit easy, I guess those who go through radiation are usually people with cancer and they also go through chemo so they don't really mention how bad radiation is because comparative to chemo it's a breeze to them. I have to say I hold my hat up to anyone who breezes through radiation and wish everyone an easy ride! To me it's exhausted me beyond belief and I am one tired sleepy girl. Part of my wonders whether I choose to sleep because when I am sleeping life's a little easier at the moment, my head doesn't pound, my body doesn't ache, the sickness is gone, my heart is calm and my breathing i can ignore and dream to a time when things were simpler. I guess I wonder whether I'm a little depressed, or whether it's just the treatment? I guess time will tell.

I'm missing my home now, but I know when I get back home things will be hard, it's a place that I realise more then anywhere that my lungs are so badly scarred now, because things are so much harder around your own home, there's stairs to climb, things to be done and you tend to move around alot more and then the breathlessness kicks in.

I try to not feel sorry for myself, but I am human, I can't help but sometimes think why me, why stu? I feel for him, my mum and everyone else around me. I feel like I'm a constant drain on them, in need of so much help and time. Last weekend my nan came and looked after me, that's never right, my nan is a strong amazing lady but she is getting old and deserves to be looked after now, I should be helping her. Instead all her time and effort is spent worrying about me and doing things to help me, my mum and stu.

I'm sorry to sound so down, I'm not really. I'm smiling, I'm still happy and I'm still loving life, but there are these moments, these rare moments when life is overwhelming and I'm filled with dread. I guess my blog could give you a clouded view of me sometimes, I write here when those moments come but mostly I still feel blessed and lucky. I'm lucky my family love me so much that there here to do so much for me and I guess I have to remember that must be a reflection on me some how, they must love me this much because I am a good person and a fun person. I just hope I can carry on being enough of a good, fun, loving person that they want to be round me forever and carry on making my life so amazing.


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Breathless and scared

The radiation has already taken its tole, I feel weak, tired, sick, my body is exhausted and all I can do is sleep, but part of me knows that exhaustion comes from the fact I'm now very ill again. This chronic rejection is so fast, everyday I wake up and feel noticeably worse, today just moving leaves me breathless. I haven't had the puff for a shower today, or to even get changed from my pjs. I'm scared. I try not to think about it, not to worry, sometimes it seems like it all happened to quickly that it hasn't sunk in yet, then I get these moments when just walking to the bathroom feels like a mile again and I know this radiation has to kick in and fast.

A friend of mine who was also diagnosed with chronic rejection but at the moment there lungs are unchanged told me about how they asked how long they had left, I didn't think to ask this, but now I sit here and I guess I didn't need to ask, if this radiation doesn't stabilise me, not very long. If it does well, I still can't imagine with my lung function so low that that would be very long either. I know it's sounds depressing and pessimistic. I'm not trying to scare anyone, but these are the thoughts your faces when everyday things are significantly worse then the day before.

Many people have asked me about re transplant, it's not something that has been discussed in length, more slight whispers and mentions. For me, all I can say at the moment on that one is I'm devastated. I don't want to give up these lungs, they were so perfect and beautiful, they worked so well and then my immune system destroyed them, my old lungs I hated and couldn't wait to give up. These I love, they have done so much for me and I feel emotional attachment to them In A sense. I guess that's all I can say on that one as I don't even really know if it's a option.

I will leave that post there for today and leave you all with my emotional turmoil.

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Radiation therapy

So I went on weekend leave and now I'm back in hospital. I have started radiation therapy for chronic rejection. Yesterday I had a consultation with my dr and it was time to ask some questions, would I gain any lung function back? Unfortunately they don't think I will, I was extremely sad at this and although I'm not sure what my lung function is due to my collapsed lung know it was 36% when I came in and I have got significantly worse. I am very breathless on any exercise, walking around the hospital is ok as it's flat but any other kind of surface change, hill or stairs I'm gasping for breath. I use 02 when walking and I'm trying to keep myself fit and strong by doing squats, push ups, weights and lots of yoga stretches. It's hard work but I won't be beaten by this and the only way I can think to over come it is to battle through and remain strong and determined as ever.

My consultant said that what we were doing was trying to crack a egg with a hammer as it all we've got. I have to say it is extremely frustrating, my reply was 'but I did everything I could, I did everything right' you wonder why you? What did you do wrong? But the answer is nothing, it's one of those things and sometimes
no matter how hard you try luck just isn't on your side? It's a hard concept to get your head round because in so many ways I still feel like the luckiest girl in the world. Some where its like good luck and bad luck are fighting to get to me, one day one wins and I receive the greatest gift on earth, life, the next bad luck prevailed and gave me chronic rejection? I just don't know, it's the strange thoughts in my head that try to make sense out of life.

So once again, it's time to give up work and to concentrate on stabilising, hopefully once I'm stable I can go back or we will look at other options. I have received alot of support and I thank you all. Hoping my next blog will be some better news.

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National transplant week

I know for those of you out there waiting for transplant, or perhaps considering being listed for one my previous post may have been some what scary. I'm not going to lie, it is scary, but iv always been an honest blogger, someone who shares the highs and the lows, because surely without the lowest of moments we cannot see how high the next peak is? Also I believe the truth however scary it may be can only leave you informed and ready right? Ad I hope those of you who read my blog are prepared for every truth, otherwise you may be on the wrong page.

So where am I going with this, well it's national transplant week, this week also marks my transplant anniversary. 2 years ago, I was dying, kept alive on the most invasive horrendous machines, my call came in what was the last hour of my life for sure. Thanks to the generosity, kindness and courage of a family I do not know and person I will never meet. This week I will mourn my donor, I will celebrate them, I will be thankful for every little precious moment they have allowed me and I will pray for there family because I know they lost there loved one this week 2 years ago. I do this every day but this week I'm not going to shut up about how grateful and lucky I am and how I believe giving the gift of life is the best gift you can give.

So although for me this time is hard at the moment with chronic rejection, my lung collapse and a chest infection, I want you all remember how amazing these last 2 years have been for me, how I have achieved to me things I never thought possible e.g cycling 180 miles, raising lots of money for charity, meeting new people, going on my honey moon, sharing a 1st & a 2nd wedding anniversary with my husband, reaching 23, working at next. Some of these things are so simple, so normal, but to me they were like a dream elusive and unreal, until I went out and I did them. I did them because of my donor and I will carry on doing and achieving to me what were impossible dreams and something's that are even to big for me to dream.

So please think about giving someone the gift of life, think about it, talk about, do something about it. Sign up today.

https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp



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Lung collapsed, chronic rejection, radiation therapy

I haven't done a blog recently as a lot has been going on, so much that I wanted to wait until I had some answers. I still haven't got all the answers, well definite ones. So here it is.

Ever since my fundoplication, my lung function continued to drop and I felt more and more breathless, have more time off work and generally struggling.

I decided to get a check up at harefield and st Mary's as I was having problems with eating to.

My st Mary went ok.

Unfortunately, harefield didn't. Very out of breath in clinic and a lung function then of only 36% I was in for a bronch next day.

The bronch didn't go well, I woke up In incredible amounts of pain on high litres of oxygen and gasping for breath.

It wasn't until later that afternoon when I was sent for X-ray did we find out why, the nurse came in and announced the surgeon was here to fit a chest drain, I said what? And that was how I was told they had collapsed my lung. This is a small possibility during bronchoscopy when they take a biopsy and due to my continuing decline they decided it was appropriate to take a large biopsy.

The surgeon came in and described he would fit a drain and that should instantly make me feel better.

It was one of the most horrific sounding things iv ever had done, there was no pain, the surgeon made sure of that. But the sounds we horrific, the pushing pulling and general discomfort and feelings of suffocation were horrible. But I didn't cry once, I stared my dad in the face as he held my hand and stayed strong. I didn't want to upset him.

Since then my drain has been removed as my lung had come up, unfortunately not all the way and the bronch didn't come up with any conclusive results. Also the collapse gave me a nasty chest infection making me much worse.

So at the moment, I'm stuck on oxygen, very breathless when I walk and struggling to do stairs and exercise but preserving as its will help my lung come up.

So we get back to what's wrong with my lungs in the first place, well, it looks like I have chronic rejection although its not full confirmed, but I am starting radiation therapy and hopefully this will get me back to pre fundoplication lung function of about 45-50% if not it will stabilises me and we will have to look at my options from there. I'm also in talks with the surgeons about have my lung surgically restuck, but hopeful it will come up on its own.

So things have been really tough and how I feel about it all? Well I'm obviously very upset, I'm upset things have got this bad so quickly and I'm back to a very scary place of limbo, not knowing what the future will be. Can I say that you ever truly leave that place, where you think maybe you can see a future, that you can stop worrying that death is waiting around every corner, I think I was there. Either way, I'm loving, living and still breathing and that's what's important and I thank my donor every day for that gift.

Also here's a link from the week before I came in, of me on daybreak for cf week promoting organ donation and raising awareness of cf. Im very proud of this as I was extremely breathless and still managed to reliever my message, which is transplant saves lives and is a huge gift that I am forever grateful for.

http://www.itv.com/daybreak/health/cystic-fibrosis-transplants/#.Ucisoe4cHLY.facebook

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2 year wedding anniversary

On Sunday me and stu celebrated our 2 year wedding anniversary. We stayed in a lovely hotel over night in Bristol and had a nice meal together. I'm grateful for every moment I have with my hubby but special occasions like this we think back to when we got married and how close we came to losing each other. The reason I got to this anniversary was due to the kindness of a stranger and there loved ones. So with every breath I thank them and on these special occasions I always say a special thanks. Sometimes I look back over these last 2 years and they seem like a dream, almost to good to be true, did it all really happen?





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A perfect operation

So how did it all go? Well would you believe I'm back home! The morning of the op I met my surgeon registrar, he was really lovely. My notes said it was almost impossible for key hole and they would be likely to go open, it was the worst thing I wanted to hear, I was gearing myself up for a quick easy op thinking if I though it was going to be key hole enough I would almost will it to be. He assured me if he had to sit there for hours cutting through adhesions to make it so, he would. Unless my breathing deteriorated. He really understood how badly I didn't want open surgery. My anaesthetist was a lovely lady and she said although my lung function was a worry, she was more concerned with how fit I was and when I told her how hard I'd been working in the gym and swimming even since my drop she said she thought I was going to do very well! They were all obsessed with the fact I taught fitness pole dancing, thinking it was intriguing and required a heck of alot of strength and fitness. Which it does, I'm glad people are starting to realise the full implications of fling myself around a pole!

So I was first in, being the most complicated, I lay there being put to sleep playing my own little game against the anaesthetic. I went off to a blissful little sleep.

When I woke, I was calm and felt happy, I knew everything was ok. I knew the nurses were there to help me and make me comfortable and someone layed a blanket over my chest and told me it was for the pain as my lungs would be sore because they had pumped alot of air In my tummy that would be causing pressure. I usually panic when I come round but I just felt a huge sense that everything was ok.

I spent a night in st Mary's where I received alot of great care. I was in alot of pain because of this air in around my lungs and felt like they were collapsing. This was partially my fault as I hate pain meds so try to not use the Pca (morphine pump you press when you want pain relief) I'm also really allergic and had a severe eye infection after itching my eyes to much. I eventually realised I needed the pain relief and was getting myself more in a pickle when I didn't use it. I was also scaring the on call doctor with my cries of pain. I met a older cf guy called tony, he was also from harefield and had a transplant and was there for a fundo. We had a lot of laughs and talked about all sorts. I'm really glad I got to meet him and if you reading this tony, drop me a email.

I was then transferred to harefield with what was the dodgiest ambulance driver, no nurse, no pain meds and 2.5 hours of getting lost with the foulest language ever, unfortunately I got to harefield very shaken and collapsed on the way into the ward, the most embarrassing moment of my life, my legs just went, my husband caught me and the nurse all ran round panicking. I was in tears and just wanted to get up, cover my face and run to my room. Stupid legs for collapsing on me. I think that whole journey was just horrific and it drained me. We will be making a formal complaint about the driver.

So I settled In and the next morning woke up, got ready early knowing I was probably going to go home that day or the next, I didn't really need that level of care and would cope at home. Dr carby came in and said the same, he was very chuffed my op was minimal and said I could go and that was Wednesday.

Iv been chilling out going down the beach, resting making lots of soups and other puréed foods, I can't eat nearly as much, struggle to drink squash the most, it's agony. Have to eat 4-5 small meals a day and feel full at the end of the day with no need to eat anything. Now I can tell you it's a dramatic change, I love food, in fact I'm usually obsessed. So this new diets weird, It's nice as a little experiment, blending foods and tastes but I can see it is going to wear thin at points. I'm not suppose to be able to be sick and I know my surgeon didn't want me being sick, but I do find food gets stuck and then I bring up mouth fully of puréed food up over a space of an hour, it's very painful like awful intergestion, things you think would be ok aren't. Drinking liquids is really hard and I find tea the easiest as its warm and you sip it. Anything to hot or to cold is horrid and painful!

So over all, how do I feel? Well I'm nearly off pain meds now, although I'm not being stubborn any more if I need it I need it and I give in to a little oramorph. Mainly, grateful. I still don't know if my lung function is going to recover but iv got the best chance to make it happen. The surgery was beautifully smooth and I think the surgeons done a cracking job on the scars and there placement to make ab recovery easiest. I feel like all this frustration over getting the op arranged everyone came together and did there little bit of the puzzle and worked very well. What more would I ask for? I'm also chuffed to know that all my hard work on fitness has paid off and made the process much easier as the anaesthetist confirmed. That makes me really happy.

So now I'm looking forward to making maximum recovery and getting things back on track, I hopefully shouldn't need as many Ivs now as the reflux was causing lots of infections and I should have a good length of time away from admission. Fingers crossed.

I just want to leave you with something my hubby said 'whenever they open you up I think they let a little bit of sunshine out, because the weather is always good and you are my sunshine baby' I love it when he calls me sunshine baby, it just makes me feel brighter.

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Pre operative assessment for fundoplication

So once again, me and mum got in the car Friday morning bags packed and made our way up to London. I had been booked in on a last minute pre operation appointment and my operation is booked in for Monday. I instantly clammed up Friday, feeling sick and stressed. The pre op was just blood get, ECG, quick chat and bloods. The nurse said that we would only know Monday if the op is to go ahead based on what the anaesthetist decides. They said because my lung function had dropped so much over such a short amount of time they might not be happy, we had this at my consultation with my surgeon to, but my transplant consultant wants this operation done ASAP, rightly so because if its not my lung function will only continue to go down, it's not likely to go up after and most certainly won't before.

I am really nervous, some people might not understand why I'm so nervous, but when your sitting in a consultation with a surgeon and when he gets up and leaves your mum bursts into tears, your going to feel a bit scared. There's alot of ifs and buts surrounding this operation for me and I won't know what has happened until I wake up, I dnt know if it will be open surgery, if my breathing with be vastly affected, I don't now how I will recover and it all worries me. I dread waking up to find out things have gone terribly wrong, but I always seem to wake up and find out things haven't gone to plan. I guess it's enough to put anyone on edge.

I don't really feel like going into everything about the operation, I don't want to turn it over in my head and I don't want to have to explain everything to everyone, I'm just hoping for the best possible out come, I'm hoping to wake up, be transferred to harefield on the Tuesday and within a week be home and two be back to working. If anything else happens I will cross that bridge when I come to it.

So for now wish me luck, I will update when I'm up to it, which hopefully won't be long.


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Kate Hennessy - it's time we talked

When I met Kate Hennessy in September after my bike ride, I knew we shared a bond, knew things no one else knew. Not only did we both have cf, but we had both been on ecmo and received life saving transplants. At that point no one knew the rough path Kate still had ahead of her and I never knew she would become such a good friend. Kate's path post transplant was very traumatic, infections, surgery and countless days in hospital.
She finally started to get her life back, her smile came back and we all thought that her rough start was coming to an end. Then an infection struck her down within 24 hours she was back on 10 litres of 02 unable to tolerate a bipap and talking invasive ventilation.

I can't tell you how scared I was Tuesday morning as Kate's mum told me she wasn't likely to make the day, that she was being made comfortable and my friend who had already been through so much was going through it all again. I cried and cried that morning, knowing by the time I finished my shift, Kate would probably already be gone. I felt so helpless and scared.

Only Kate didn't die, she once again fought the odds and battled through. On Thursday I went up to clinic and walking into Kate's room, she was already off oxygen! I held her tight and cried so grateful to have her still here and recovering.

Kate's had a hard time post transplant, but I thank her donor everyday, their the reason she is still here, the reason I got to meet someone so amazing and so special. Not only did I meet Kate but her mum to and they are two of the most amazing people!

So I would like you to watch this video on Kate spreading awareness of organ donation and how important it is.

Kate Hennessy - it's time we talked

Please share this video and get people talking about organ donation.



Here is a link to there event Hen fest 2013 please feel free to donate.

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Pole jam with Felix cane

So today me and 2 of my students traveled up to surrey to Taylor's retreat is for a 3 hour ole jam with Felix cane. I knew my lungs being at 45% I would struggle, I'm weak from the high dose prednisalone for my organised pneumonia, as it strips muscle. So I knew I wasn't going to be at the top of my game but I'm so keen to get back to full strength and emerge myself in the world of pole I decided a pole jam with Felix was a amazing opportunity and a chance to see my idol and just simply amazing lady well unmissable right?

So here's some pictures from today.
































































Felix sandwich












It was a awesome day and I realised I'm not as weak as I thought I'd become, that I still have a lot of pole potential that isn't being used and it's my responsibility to make use of it, that I love being upside down whether its pole, hoop or silks!

I had my consultation this week for the fundo operation I will blog about this another day when I have muddled through all my thoughts on it. I have to say it was rather scary and emotional for me and my mum who came with me,


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