You can never say thank you enough

Video blog
Thank you x
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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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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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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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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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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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My surgeon

As he walked along the corridor, an unassuming man in blue, I know his face well, I could never forget that face. My own lights up and he smiles back acknowledging me. This man nearly 2 years ago took a chance and saved my life. Full of heprin, very near death, he operated on me, on what to me seems like the quickest transplant surgeries ever! I have this picture in my mind of him afterwards going back into the surgeons room, or wherever they go and writing the time at the top of the board as if he'd just beaten the top gear fastest track time.

I haven't seen him since transplant in itu and to be honest I wasn't very with it or capable of gratitude. I was just to confused at the time. He asks me how I am, I told him iv got a slight blip, but otherwise I'm pretty amazing, I want to tell him what iv done since transplant, what iv achieved, I try to think of the best thing, to wow him with his own expertise that saved me. He said he saw me ride in on my bike ride, that's it he knows! I simply beam and shake his hand and thank him. To look into the mans eyes and express my gratitude, that was what I've been wanting to do for a long time. A man who dedicated his life to saving others and on 11/7/11 along with the many other people's time, knowledge, expertise, he saved mine.


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Mysterious lung function drop

I guess when you have a lot to say sometimes it can be harder to write it all down. That's where I am right now.

Since coming home from holiday I have been in harefield hospital for over a week. My lung function plummeted from approx 90% to just 47%. With a clear chest and no signs of infection I was bronched ASAP. The bronch came back clear and the hospital started there arsenal of tests. This including my reflux test which I have been waiting to re have. Fundo op It came back positive and now I'm waiting for the operation as an emergency. I have to say part of me still thinks something else is wrong, something's missing. Apparently I have had severe reflux since before transplant when I had my original test, now I know that I had it then, I used to vomit from it constantly and often if I laid down it would spray out my nose but I don't have these symptoms any more. I understand about this silent reflux, due to my nerves being cut at transplant I shouldn't feel it, but surely it should still make me vomit while it runs up my oesophagus, surely it would still run out my nose? And if it's always been bad then why has it done this damage to my lungs now over the space of a week or so while I was on holiday? I'm not saying I don't have reflux and there wrong, I'm sure I probably do but it just seems to not fit in together as it should and I feel that maybe there something else there missing?

So tomorrow I'm being re bronched, possibly looking for a missing link in the story or making sure no infection or rejection set into these now damaged and vulnerable areas of lung.

Will I recover? Well if this is all reflux, after the operation the question is will it all bounce back? Well it seems no one really knows, a small percent recover what they lost as it was only inflammation caused, not full blown lung damage, most, stabilise and the rest? Deteriorate. Iv been given a course of the lovely methyl prednisalone again (high dose steroid :-/) which stops inflammation and unfortunately my lung function didn't budge a smidgin. This makes me worry that my precious lungs are now damaged.

This drop in lung function has left me remarkable breathless and my exercise tolerance is restricted at walking and high levels of focusing on my breathing. At times I cannot walk and talk but others I seem to be ok. I have adjusted remarkably quickly to the change.

What now? Well I have the bronch tomorrow, I wait for this operation and Im working hard, Although it's tough, I have to walk, I have to exercise, iv got to keep moving. This is the only way I will recover quicker from the surgery and the only way to get my lungs stronger. I'm determined to get over this and determined to not let it get me down. My mind is clear and focused on one goal, getting home fit and healthy. Till then nothing else matters because it all becomes insignificant, if I don't recover and don't get better then I will start to lose everything again and that isn't a option.

I am up here without my hubby and without my mum but I'm lucky to have friends and family who have been amazing especially my step mum and dad so thank you to everyone who has expressed there love and support. My mum and stu have decided due to funds and work to come up when I need them most, at the operation. Until then I miss them like crazy and cherish the 6 hour+ journey stu did yesterday to be with me for 9 hours. Although watching him leave was extremely painful and sad.


So I think I will leave the blog there, I will be writing another blog soon on a special visitor I had, my idol. I will also keep everyone as updated as possible. Thank you.


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Flu, recovery and mini break

So sorry everyone for being a bit slack, my last post was after my bronch where I was told I had a fungal infection. It turned out i actually had flu! Which thinking back makes sense, chest pains, really struggling to walk anywhere or do anything on the Friday and my lung function was down 40%. So I was put on immuno globins, methyl pred, tammi flu, colomycin, tobramycin, posaconazole and put in isolation due to the methyl pred making me very immuno suppressed and also being on a transplant ward with the flu obviously I was highly contagious and risky.
The admission continued to be absolutely awful. The drugs gave me terrible side affects leaving me feeling awful. My joints became loose and would randomly pop out of place causing horrendous pain, my diabetes went from virtually none existent to making me feel physically sick due to high sugars that weren't controllable due to methyl pred. I felt bloated the whole time and ate loads. My skin seemed translucent and I felt just dreadful. The methyl pred made me feel like I was on edge and a group of people seemed like buzzing bees. Being in large crowed places when I had my face mask on was a no due to the sheer anxiety it brought. By the time it came to going home I was practically running out the door screaming even if my lungs weren't quite up to it yet. I'm pretty sure I had to check myself and make sure I didn't just start running.
I managed to escape last Tuesday which was a complete shambles. I was told I would be going home Monday to find out transport was not arranged, neither was any of the tests I needed before I left arranged. I spent Monday running around trying to sort it all and feeling extremely fragile. I did not go home Monday but I was moved to the family accommodation 'for my own benefit' in other words cutting costs and leaving me on my own with no one around when I was really not well enough because they wouldn't fork out a extra few quid for my mum to stay with me or to send me home that day. I can certainly say there was nothing about park wood that was for my benefit. So Tuesday I headed home on transport and proceeded to spend Wednesday and Thursday in my local having bloods done. My stomach stopped working and my kidney function was off but although I spent a length of time in the hospital I was glad to finally me home and back where I felt comfortable.
Friday finally I started to feel normal, my sugars were getting better my renal function picking up and the high dose steroid were coming down! Those things are toxic and possibly one of the worst drugs ever! I describe being on them as having a battery shoved where the sun doesn't shine and you spend the rest of the time having your body trying to vomit them out your mouth.
So feeling much better but due back in Harefield Monday me and stu took a mini break driving via the coast and then up to Harefield. Leisurely stopping where ever and having some us time. I cannot express how much I missed him so a little us time was needed. When I'm away from him I tend not to talk to him very much and when I do I make the conversations short. It's all part of my survival tactic. If I shut him out it doesn't hurt as much that I'm not with him. So we went to the cinema, bowling, shopping in various places and eating lots of food! (High dose steroids still affecting my appertiate).
So clinic Went well after over a week in Harefield and not seeing one consultant I actually saw the main man him self (never seen him in clinic before since having my tx) I panicked at first when I knew I was seeing him, I wondered if I had done something wrong or some results had come back but no I think it was just one of those occasions to catch up on how ide been since tx and that I was actually quite poorly when I left and the nurse who organises clinic realised I was struggling to stand due to being short of breath. Always a good reason to make sure everything's ok. But yes actually I was doing really well, the few days away had done me the world of good, my breathing is getting back to normal, I'm still not quit there but recovering quickly considering and all in all It was a good meeting to touch base on a few things and made some of the confidence come back I had perhaps lost in my health due to being so poorly this time.




Me and stu before clinic
So all in all I'm ready to get back to the gym and start kicking ass! I was gyming 5 days a week before this, pole training, aerial acrobatics training and yoga. I full expect to be back doing all of that over the space of two weeks and also to cut down the copious amounts I'm eating, which to be fair iv not gained any weight on the steroids but lost it, but I can't live eating this much!
So now I'm back home, teaching but I still have a week off from next which is great as it really gives me chance to get my strength back. So a bit of a long slog of a blog. I will update soon on my progress getting back into my hectic schedule!
P.s I did ask stu to prof read this but he protested saying he likes to read it when he's on the loo so sorry for any mistakes! Lol
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Bronchoscopies, fungus and home sick

Today in harefield hospital I had my bronch, a camera was put down into my lungs under a GA they were washed and for the first time ever a biopsy was taken. The biopsy is checking for signs of aspiration (reflux meaning I need the fundo op) chronic rejection, acute rejection and antibodies rejection (I have developed donor specific antibodies).
Waking up form my bronch coughing spluttering, feeling like I was suffocating. Mouth fulls of flem were suddenly flying out my mouth, all I could think was I thought they were suppose to wash this crap out and I'm pretty sure none of this was in there before! I was still coming round but trying to sit up, the GA wouldn't allow me to by body was limp. They sat me up I was panicking, I had a 02 mask on and they just kept reassuring me I was ok and my sats were ok. After bring up loads of flem I was taken Into recovery. Then moved on to the ward. The rest of the day I spent in and out of sleep.
The doctors came round and told me they were pretty sure I had a fungus again Last time I had a fungus this time it was all In my right lung again, that although my ct didn't show a collapse all my lower airways were collapsed due to the amount of thick flem blocking them. So I'm now on caspafungin iv (spelling?) I don't know if I will undergo repeated bronchs again like last time but fingers crossed this drug clears it all up. I am on voriconozole permanently since my last fungal infection but in clinic last my level had dropped even though my dose had not changed so now there waiting for my level to go back up and hopefully this should all clear up.
My lung function yesterday was 72% so still on the up but a long way to go to 97%, I couldn't do it today due to the biopsy. Also since being In here and eating all the wrong foods and being fairly sedentary compared to my usually routine of work for 6 hours gym for 1 1/2 then teach for 3, some how traveling from work to the gym to home and eating in-between this all. My blood sugars have had a hissy fit. My body also doesn't agree with GA s so hopefully after a few days my sugars will start to get better.
For now I'm hoping to go home over the weekend. I'm missing my little ball of fluff (Kia) and my hubby. I can't wait to have a day with them Sunday. So fingers crossed!
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Exeter hospital to Harefield hospital

So my Ivs didn't seem to be working and yesterday in excruciating pain and lung function at 62% fev1 from 97% I rung Harefield, they advised that I wait till Monday and be reviewed in clinic. Well by the end of the day I couldn't handle the pain and developed a temp of 37.8 I decided to go to my DRs and get pain relief. They decided they were not happy with my numbers and I was to be admitted to exeter hospital with a view to go to Harefield on Monday still.

Since being in my breathing has improved and my numbers are up slightly at 69% the pain has gone as has the temp. Iv had a X-ray and ct scan both showing 'change' various different shadows that weren't there before. Harefield have now decided to have me up there tomorrow and I will get 'ambulanced' up, I'm not that sick but it's just there way of transferring me.

As I have said with any blip you wonder what the cause is, is it really infection? or something more sinister? you wonder whether this is the beginning of the end? you can't help worry those things but I'm sure whatever it is is treatable and will be sorted out ASAP and in a way I'm glad to be going to my specialist centre at least they can deal with it efficiently and make sure all the 'other' possibilities are ruled out.

I will keep everyone updated through Facebook, twitter and my blog and thank everyone for there continuing support.

Also here's the link to my itv piece http://www.itv.com/news/westcountry/story/2013-02-12/from-the-heart/

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And so the ball just kept rolling

I know this is over a week late really but I'm here to update you all on how clinic at Harefield went on Monday last week.

Well it was a long old day to say the least, 6am knocking at my front door, tap tap, tap, I had forgotten to set the alarm. The first time ever I get hospital transport and I forget to actually get up. I ran down stairs in my dressing gown and told the driver I would be ready in 10 minutes, luckily I had indeed had a shower the night before got my clothes ready to put on and my food for the day packed. So running round getting dressed, I did my hair up in a slick donut Hun. Pristine and easy, make up in a bag, I would be putting make up on whilst in a moving vehicle! (I did not understand how hard this would in fact be!) and food thrown in so I wasn't quite 10 minutes but 15 isn't bad when you've just woke up!

So the journey was long, we went via Southampton for another pick up several hours later we arrived, I'm just glad the company in the car was good, otherwise it would have dragged!

I felt particularly nervous about this appointment, sometimes you can build things up in your head, bigger than they actually are. Possibly what iv done over this while fundoplication operation. But anyway my lung function has been a bit lets say squiffy and I had a heap of questions about this operation, in fact a huge sheet, not all for Harefield as there not the hospital doing the operation but they can certainly answer a lot of them. So I had bloods, lung function (which wasn't as bad as it had been(yay)), x-ray, then we lunch for a bit and go back, by this time tiredness was setting in and in the hot environment of the hospital I was falling asleep.

I was called in, a doctor I have never met before, although he assures me he knows me as he was at a talk I did on transplant and organ donation (humm I wonder whether he's another stalker(only joking)) we sit down and the first thing he asks is have I had it, had it, had what? Had a baby? Did I look pregnant? No the op, did I have the op, humm straight in there with that are we, interesting. So I fidget in my seat uncomfortably and tell him that I actually really don't want the op as the surgeon scared the living s*** out of me, I blurt out all my fears and uncontrollable thoughts and he steadily looks through all my information, with my one big question, do I really need it? Well he explained the risks, which I knew already, I wish doctor would ask that before explaining away, a simple, do you know the risk of not having the operation if you do indeed have reflux? I could say yes then 5 minutes wouldn't be wasted of me going yes I understand that. I sit and go through the reasons I'm worried about the op, such as open surgery being a big op, with huge recovery times, iv just got recovered from the last one, yes al be it slightly more major, I also said about affecting my career, well everything.

So the first thing we looked at was my previous reflux test, he said it was positive, this is 2 years ago I had this test, when I was having severe symptoms, before my transplant, in which time my reflux has vastly improved, iv had some dodgy bout after my stomach bug but actually on the whole it's lots better. So we decided I needed to have a retest, also I would need a ct scan to see if I have any signs of chronic rejection from any possible reflux, then a lung biopsy to also check for rejection. He conversed with my consultant and came back at which my consultant had said they were surprised about the possibility of open surgery as they hadn't realised my former bowel surgeries and agree that they should retest first as open surgery poses many more risks, including infection due to weakened diaphragm and intercostal muscles.

So I heard what I wanted to hear, if the tests come back and If i need it then fine. Ill be straight In that operating theatre. The tests are all to be carried out immediately so that if there is reflux we won't be delaying the operation to much and no further damage will be done, iv also been prescribed higher doses of meds for reflux in which will prevent it as much as possible.

As for my lung function they weren't all that worried.

So that was it, the big appointment I was nervous about, I had no reason to be.


I will be writing a blog on a few other catch up things but just to let you all know I will be on itv west country today (Tuesday) at around 6pm it will be available on the Internet and ill post it here. It's for itvs 'from the heart' campaign supporting organ donation. It's an amazing step in the right direction and I'm glad to be a part of it and I even got to introduce and sign off my own piece a small step toward TV presenting.

So I will leave you all now, hoping all my readers are happy and well and if not I wish it for the future x

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Keep the ball rolling

So recently I feel my life is coming together in lots of different ways. I'm busy and I love being busy. Working at next, attending the gym with a new hard regime, training on pole, starting hoop regularly and teaching pole is really picking up nicely. The best thing tho is, yes, presenting might actually be getting some where, I'm doing a few pieces for BBC radio Devon on pause for thought in march and also I got asked to be interviewed for itv West Country as part of there 'from the heart' campaign for more donors, but a new twist has developed I'm presenting my own piece! Which will be used in my show reel! How awesome is that! I'm applying for workshops and experience with channel 4s 4talent to! I just love it when a plan comes together!
It's nice to feel the momentum of life picking me up and rolling with it. I just hope that health complications don't stop this ball from rolling. There's only so many times I can push it all to come back together. But hell ill keep trying every time because I know my healthy patch won't last forever and unfortunately I have been struggling the last few days with a lower than normal lung function, tackicardia and palpitations. I'm due up to Harefield Monday where I plan that my orals will have worked, I won't be kept in and will feel miraculously better! Come on my beautiful lungers we can do it. It turns out were a pretty awesome team after everything we've already faced in our short little relationship.
So wish me luck guys and hope I can keep this ball rolling
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Fundo operation anxiety and fear

I've talked about the fundo operation im suppose to be having Here

Well they rang up the other week and left a voice message saying I can have it as early as the next week, suddenly the fear that had been niggling inside me hit, I couldn't bring myself to ring and still haven't. Thoughts swimming around my head and an all mighty no just keeps screaming out over it all.

I guess you might think me pretty silly, it's just a little op right? well no, like I said in my previous blog mine may very well not be and this was again reiterated in the letter I received about the consultation and it really put across just how much they don't think this is going to be simple. Nothing in my life has ever been simple, from treatments, operations and obviously my transplant (not that in any case is it simple but you get what I mean). I just don't think I can face waking up and hearing them tell me it went wrong. I can't face that feeling of the unknown again. I don't want the new scars either dotted across my abdomen or sliced right through the middle, I may have lots and I'm fine with them, iv come to terms with them in time but I just don't want to have to. The recovery scares me so much, I know in comparison to learning to walk and talk it will be nothing but when you've just built everything back up to somewhere, where you feel strong healthy again, to have any incisions in my abs will also halt my pole progress and training. it feels pretty soul destroying to be knocked back down. How many times can I keep getting up? I know some people may think me silly but all these anxieties from my transplant flood back when I think about it and its something I'm just not sure I'm ready for?

I decided to mention it to my cf nurse the other day when I was up there and ended up in tears feeling very panicky and having to calm myself before I went into a panic attack. I asked to see the phycologist to see if I can put myself in a place where I'm ready and I also have an appointment at Harefield Monday, routine clinic, where I will discuss necessity and other options (if there are any) the last thing I want to do is risk my health, but while my reflux has calmed and not posing Immediate danger to my lungs, I want to weigh up all the options and prepare myself a little more if this is the only way.

I'm just hoping there is some other way. I tried to be strong and just get on with it but I couldn't.





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Harefield, fundo operation, Neil and thought for Kerry

I have been rather quiet everywhere, on Facebook, twitter and even here. I have needed some breathing space time to just be me. I have to say I think it's worked, I feel so much better inside myself. I have thought about my life inside and out. I started to think about what I actually wanted and what was stopping me, in conclusion I decided I didn't want to live this life where I'm struggling for money, bored out my brains. I came up with a ultimate career goal and smaller ones that will help me get there. I decided I love teaching pole and love pole but as a main career it's to stressful, people cancelling on you all the time, never knowing what your income is from one week to another, it was zapping all the fun out of it.

Thinking about what sort of lifestyle I want, what makes me happy and what I enjoy, I decided I would like to be a presenter, I think my background in media has prepared me for the highs and lows. I have contacts in this industry and thinking about all the different aspects of presenting there's not many areas I don't like. I mostly love public interest stories and journalism side. So to get to my main career goal I have lots of little goals, first being, get a part time job on top of pole to supplement my low wage, well done that, I start of Friday with a temporary contract with next in women's wear, which I'm looking forward to. Next goal, a portfolio and show real, both of these I'm organising. Then there's also contacting all my contacts which iv done and had some feed back from. I know this is going to happen over night but I know I can do it.

So other things I've been up to, Iv been up to London for Harefield check up where everything's all well, I was prescribed a drug for nerve pain that's been agony, but good to say that's all sorted. I also had a appointment at st Mary's for a operation I need, I have had bad reflux for years, before transplant and now after, so they have decided to do a fundoplication, basically wrapping the opening of my stomach with flesh from the stomach, by pulling it up and around.

This is a very common operation post transplant. It's done through key whole and is a minor op. unfortunately mine may not be so minor, it turns out that due to various stomach ops I have had micolium isleus and appendix, I may have a lot of scar tissue, they think this because of all the blockages I get that the scar tissue may be one of the reasons. If they can't do it through key whole they will make a scar from the bottom of my sternum to my belly button. A substantial scar. I was devastated to be honest, I take pride in my body and my looks, I don't think there's anything wrong with that, I have near 40 scars now, I get over them each time a new one appears but for some reason the idea of this one really upsets me. I hope that it doesn't come to this. It's strange though my transplant scar never bothered me.

While I was up there I took the time to catch up with friends and saw Neil who's doing amazingly and on the last day I said goodbye had the best smile on his face. Transplant is no easy journey but when you get to where your going its amazing.


This is a picture of the scrap book I made Neil, it's one of the hardest and best presents iv ever done for anyone, following his journey from his call to when he gets home, leaving him space to put other stuff in. There's spaces for firsts, first Christmas, golf game post transplant.

All my Christmas decs are up and I've been baking. Feeling festive.

I'de also like to leave you with one last thought, while your wishing
for those pair of jeans for Christmas, or new straighteners. My friend Kerry thorpe is wishing to make it to Christmas, she is wishing for her call to come. Without that call we don't know how long Kerry will survive, so when your making your lists for Santa please make sure you fill out the organ donor form and get all your family to, when your making your Christmas wishes, make one for Kerry. She is now suffering regular respiratory arrests, I went through many of these and I cannot express how scary they are because you are literally staring death in the face.

Stay strong Kerry we are all thinking about you xxx


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Yearly clinic

So my annual review, One year on being back at hearfeild and seeing all the staff and telling them its been one year and this time last year I was only just coming on to E ward, 'no way' was the response. The sunny weather that has finally arrived really takes me back when your there, It was sweltering when I was in and all i did was have hot flushes and sweat.

I had bloods, Ecg, fitness test, lung function and xray.

 I have now had a chest infection for 3weeks, at first my lung function wasn't affected, It started to be affected over a week ago and I started Cipro oral antibiotics, but needless to say it didn't really help, I had 2 ashma attack while cycling, coughing continuous amounts and sleeping loads. I knew my year review wasn't going to be as successful as I would like. The fitness test, well I still kicked ass, they were extremely impressed and said I was above average of a normal person, that my lungs were very good and they were surprised at how smooth my lines were, indicating that the lungs were working at a normal capacity and didn't seem transplanted at all. Which is fantastic. They said my fitness level was well beyond average transplant patient. I'm so happy as I have worked hard. They did how ever stop me Earlie, they said they didn't want me to push myself due to the infection, I was so annoyed, I wanted to bust some records. They did however say I could repeat next time at which my result would be even better.

My lung function was down, a tad, but I knew that, I thought my consultant would want me in, i instantly got in there with 'I want home ivs' and she went 'ok' surprised and yay. It feels like they are suddenly aware that I know my body now and trust me. relief.

Kidneys are functioning very well, which is great.

Diabetes, Well my h1bc result is only slightly raised but very good as I'm diabetic and even better as I have been reducing my insulin for a while, at the same time altering my diet and exercising to make sure my sugars are stable, All my home readings have been below 10 which is great. I'm getting somewhere for the hard to manage diabetes that was having hissy fits all the time, to correcting it, Ill never be with out it, if i eat crap then my sugars are high, but as long as i eat like i have then it will remain good.

Everything else was pretty good, I need to reduce my tac slightly and will start home IV next week, I also need my sinus's looked at as they are highly infected and causing the infection in my lungs.

To see what else went on, on my day at clinic, please look at my last blog, Kimberly kneil's new lungs.

HOME!!!

So my Hubby travelled all the way to London for the day and bought the dog with him. I was so happy when I woke Thursday morning and text him to find out when he was setting off for his 3 hour journey, to which he rung me and told me he was about 20minutes away.

I dropped everything and rushed to beautify myself and make sure I looked as pretty as possible as I wanted him to be happy to see me and not forget what a wonderful wife he has while I’m away.

We went for breakfast and I finished off my neb regime, which is now even more ridiculous. 9:00 Pumolzyn Hypertonic, NAC, Atrovent, Salbutamol, Tobi, 14:00 NAC 18:00 NAC 22:00 Pumolzyn Hypertonic, NAC, Atrovent, Salbutamol, Tobi!!!

Then we went for a drive to find Ruislip Lido, I'm getting pretty good at finding my way around London without a SAT nav but I think we ended up in the right place by sheer luck this time as my directions were awful. We walked around the lido, with the pup and chilled in the sun. 1.2 miles around the lido and then we were off back to hospital for my IVs and neb.

We then headed out to lunch, I had a nice Thai chicken curry and most of a massive dessert, rock road covered cookie!! It was huge.

We went for another walk around the lido another 1.2miles and then before we knew it, it was time for Stu to head back. I was so happy to see him but he reminded me that he had Saturday afternoon or and Sunday afternoon and there was a big family get together for his brothers engagement, which I was missing this weekend so I was gutted.

So that evening I walked my friend Neil around the hospital, with his Mum Cath. He was at the hospital for assessment which went really well. I wore a mask the whole time, so I didn’t catch any nasty’s. We used to always mix pre TX which is very naughty of us and I don’t advise it to anyone, but we were always careful when it came to coughing ECT.

The Friday morning bright and early I was taken to the theatre for my third bronch. I warned them my throat was quit damaged and sore, so could they be extra careful this time. I have a large haematoma at the back of my mouth/throat. Off I went to sleep counting down the mils of propafol. I got down to 7mls!!

I woke up this time, no pain, no aches and my 02 being taken off straight away. I knew things were much better. I was wheeled back to the room; my mum was on her way. I decided I needed to get up and dressed and head to get something to eat. A vast improvement each time!!

Once I came Back I got the great news, I was going home that day!!!! My Broch was alot easier to shift and my lung function is up to 87% and 92% roughly another 10% to go but a vast improvement. We waited around for a few things and then hit the long road back to Devon, me chilling in the passenger’s seat with my sunglass’s and shorts. Home to my Husband and Puppy.