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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