Kirstie: My New Lungs Documentary

Following on from love on the transplant list here's a documentary by gloustershire universitys Charlotte Miller Kirstie: My New Lungs  Please share and help spread awareness for Cyctic fibrosis and Organ Donation.

I really like this doc, I feel it shows me honestly. I hope you like it to.

6 month

Today 6 months ago I received my second double lung transplant. My gratitude to both of my donors is un explainable.


I am so sorry for the family's loss, I hope that in there hearts they can find some peace from such a huge grief. I know that grief doesn't fade or lessen but I hope that maybe through this donation they can find some comfort. With every breath I am thankful for this gift, the gift of life that both my donors have given me. I live every second with the purpose to live it to the full.

For now that is all I can say, I'm planning to write to my second donors family soon.





- Posted using BlogPress from my iPad

When do you get back to work

Something iv been thinking about is when do you go back to work post transplant? Especially double lung transplant?

Well my first transplant is as keen to get back to work, but then I went Back to fitness pole dancing 3 months post transplant it was at my leisure, I could choose when and how often I taught. I enjoyed it and it was enough to keep me occupied, but not stress me out and over work. I think they were both important because I was still recovering mentally and physically after the trauma of ecmo and transplant. I'm happy I did that.

This time I was forced back to work as I wasn't entitled to incapacity/esa benefit and with being homeless because our rented house was full of mould (not good for lung transplant, especially newly transplanted lungs) we had to put our dream, buying a house, into fast forward. Living with my nan and then in my mums annex when she was able to move into her house as she had just bought and was renovating. Therefore I had to go back to work to be able to afford rent and bills. So exactly 3 months post this transplant, despite being heavily depressed and anxious which I was seeing the phycologist for, I went back to work.

Let me explain a little about my mind set at the time, I was anxious because as you may know I'm still at high risk of chronic rejection, I was trying to get over another dance with death, saying goodbye to my family and friends, grieving for my donor whilst feeling forever grateful to them and dealing with the confusion that I had said goodbye to the lungs that had saved my life although my connection with my first donor is always in my heart. I didn't know if I'd recover or how well I'de recover. My doctor suggested I didn't go back to work yet for medical and mental recovery, feeling maybe. The last two years had caught up with me.

I didn't want to go back, getting out of bed on some days was hard, I was still extremely physically tired and having various other recovering issues i went back and It was hard at first I'm not going to lie. Sometimes I wish I had had 6 months to recover but being back at work gave my Mind other things to think about and then buying our home and being busy with that to, there wasn't time to think and that was just what I needed.

So I guess when people ask me, when should I return to work? It's different for everyone but most important thing is when is right for you and in my opinion whether you go back to work or not having something to keep your mind from Everything can be really good, but remember all our thoughts and fears have to be dealt with in the end. The phycologist gave me a specific time and day I could think about it all deal with as much of it then and then lock it away till the next week so I could function as a human being and be happy.

- Posted using BlogPress from my iPad

You can never say thank you enough

Video blog
Thank you x
- Posted using BlogPress from my iPad

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💕💕


-Posted using BlogPress from my iPad

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.


- Posted using BlogPress from my iPad

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



- Posted using BlogPress from my iPad

Location:Harefield

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



- Posted using BlogPress from my iPad

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

- Posted using BlogPress from my iPad

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?





- Posted using BlogPress from my iPad

Oh what a lovely Christmas and here's to a happy hopeful new year

My Christmas, well what can I say. I started work at next over Christmas and it has been great, hard, crazed but great. I loved the buzz of being busy and not having time to over think silly things. I worked hard and it was repaid with A perm position of up to 20hr a week. I feel less stressed about people not turning up to pole lessons already and I'm enjoying teaching.

My Christmas Day, well it was everything that to me Christmas is meant to be, that life is meant to be about. Family. I spent the day with my nan, grandad, stu, mum and her partner ash. I had a roaring laugh, helped mum out with the dinner, played games and felt the joy of giving them all presents which I had thought long an chard about. The joy of there faces lightning up. That to me is the best, but I was of course royally spoilt and I am very grateful, but my Christmas would have just been as good just for being with my family.

I can't tell you when the last time I really had such a nice Christmas, it really just felt special.

Which brings me on to a special family and a special person who will always have a place in my heart, soul and mind. My donor and there family. I hope my donor had a splendid Christmas wherever they are up above, shining on us all. I also hope my donors family were able to have a great Christmas, knowing there loved one isn't far. I once again cannot say how grateful I am my donor signed the register and there family also choose this decision with out them I would not have seen this or the last Christmas and all I can do is wish them love peace and happiness with every fibre of my being.

I now look toward the future, a future of opportunity, fun and not wasting one second. I have so many plans for my life and I am now going to take hold and live them. I hope to start my career in presenting in 2013, to have a proper holiday, in fact to have a few, to not forget or neglect my beautiful family and my gorgeous husband for where ever 2013 year takes me and I hope that that is far, I will be taking them with me.

I wish you all a happy new year, I wish that all your wishes and dreams come true and I wish 2013 will be the year my friend Kerry thorpe gets her call because she will not last much longer without it. Xx

- Posted using BlogPress from my iPad

My Lung trasnplant anniversary

Yesterday was a simple day, I went for lunch with Stu, Mum, Nan and my sister, We raised a glass to my donor and talked about this time last year.

Me and Stu went and watched a film together.

Then at 8:45 we all gathered on sidmouth beach with lanterns, There were my two best Friends, Julie and Emily, My Mum and Nan, Stuarts Parents, Stu (obviously) and my niece and nephew (my sister couldn't make it due to looking after her youngest) We all sat on the pebbles and wrote a message of thanks to my donor, Mine was simple,

Thank you for the chance to breathe,
to live,
to love,
to spend this extra time with my Friends and family.

My donor knows how I feel I am sure, I feel forever grateful and words cannot describe how I feel about them. It endless.

I read out the letter from there mother, which some of my close family had had the chance to read while others hadn't, my nan was taken away with the depth and detail in the letter and said she could not imagine how brave that women was to write such a beautiful thing, my mother often describes her as an extremely understanding and intelligent women. I think they know how much this letter means to me, I cherish it and keep it in a special box with all my other transplant stuff, but that is the most important. Reading the letter out loud you think I would cry, but no theres something about it that is so soothing and comforting, its has so many happy moments that I can only smile and also laugh in parts. I know my donor had a brilliant sense of humour, I can feel it lifting of the pages with the details about them.

We all said what our messages were and then we played a couple of special songs.

Then the hilarity came, we tried to light the lanterns, and then when we did to let them float in to the sky, this ended up in us spread across the beach chasing our lanterns as they went across the ground and tried to make there way to the sea. There was lots of laughing and screaming when we would finally get one to take off, It wasn't as planned, but to me it was so much more, the comical genius of our situation I pretty sure if my donor was watching would have been in hysterics. We managed to set 3 lanterns out on the wind and over the sea, at which I sat back and just felt great happiness wash over me. Content.

I was also on the tv yesterday heres the link ITV westcountry

A reply

I went to clinic on Thursday. It was a great clinic I got to meet Sarah who's from Cornwall, so my neck of the woods and It was great just chatting about things with someone who's been through the same sort of thing. I have to say, I find I have such a connection with other transplant patient especially Lungs and heart. Something about your chest being cut open really brings you together. Which is why I eventually want to set up a Lung transplant Support group for the southwest. Its something I have though about and if theres one already out there, then well there not doing very well as I don't feel very supported. I know It could be a great deal of work as I want anyone in the southwest to know that the group exists and have regular get together, once a month. Iv decided It's my next project after Sept 9th the date I finish my bike ride, that is if I can hold off till then. I've got great ideas to make sure south west patients know we exists and I think It could be a really great thing. My Lung function was the highest yet.

Anyway, as I was in clinic waiting. Rob the transplant coordinator came up to me and asked to speak in private. I knew what it was about, My letter. He said there was a reply and that it was quite detailed and that my donors family also know who I am. I knew I would accept this letter and said yes. He went to go get it. I went back and sat with my mum and burst in to tears. I had been waiting and wondering and now the time was here, suddenly I felt great fear, would they like me? Have I done enough for them to be happy about there donation? What if they were disappointed or upset by anything I had done? Rob arrived back with he letter and saw I was very upset and asked again, 'are you sure?' I was, I knew I would be upset but I had to read, I had to know.

It was one of the loveliest letters I have read, So many beautiful memory's of my donor, things I could only wish to know. I feel so lucky to have been given this information, I already owe my donors family so much, but this was just that one step further. I can never say thank you enough to them. The letter was left open for me to write back. I'm sure I will, when I have had time to absorb the many facts.

Its leads me to a film I was watching earlier, based on a real story, I can't remember the title I was to absorbed in the story. I switched it on and little did I know It would lead to organ donation. A teenager had died in a car accident and the family were approached about organ donation. I burst into tears, thinking of what my donors family went through and the hurt they must of been feeling. The deep pain I felt watching this, just made me feel so grateful and thankful to them.

So I will leave my post there today.

Thank you for reading.