A perfect operation

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

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

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

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

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

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

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

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

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

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

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Pre operative assessment for fundoplication

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

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

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

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


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Kate Hennessy - it's time we talked

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

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

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

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

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

Kate Hennessy - it's time we talked

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



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

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Pole jam with Felix cane

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

So here's some pictures from today.
































































Felix sandwich












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

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


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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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Felix cane

I'm not one to follow celebrities, to idolise or be star struck. I admire certain people and think what they've done with the careers is notable but it wouldn't have me weak at the knees. Only one person has ever made me do that and I met her when she came to visit me in hospital. Felix cane. Your probably thinking who? Unless your interested in fitness pole dancing her name isn't greatly known in the wider world, but let me assure you it should be!

I'de had a bronch that morning and just felt ready to take 02 off, in my pjs, no make up and to be honest I couldn't have cared, if I had known my idol was going to walk in then well I might have made more of a effort. My friend Sam Ames from Taylor's retreat was hosting Felix workshops the whole month and I had already expressed how upset I was that I was not well enough to go or to meet her. Shes from australia and travels the world so its not every day you get the chance. Sam walked in on her own which was a nice enough surprise anyway, she gave me a card expressing that Felix was sad we couldn't meet, next thing Felix is there in front if me! I then did the geeky thing, started crying and breathing stupidly! In fact I had to put my 02 back on I was that bad.

I then proceeded to spent a couple of amazing hours chatting with Felix and Sam, in some surreal world. It was crazy.

I'd like to explain why Felix is my idol. She is a world champ at pole, cirque due Soleil performer, you can't even imagine the things she can do on a pole, the strength, grace, skill and beauty of it is something unimaginable. It is something that my whole 6 years poling has inspired me to the core and since meeting her has inspired me to recover so I can train hard and possible achieve one eight of what she does. I really can't describe what her visit did for me and what a huge moral boost it was.

So here's a few pictures of my time with the extremly funny, witty and strangely down to earth women.




















Just a quick health update, I am home and have a consultation in London for the fundo operation Wednesday, I had a bronch last Tuesday which showed I have something called organised pneumonia, it's a inflammatory response that collapses the airways, I'm on 6 weeks treatment of high dose steroids for this, in which I will eat everything in site and become fat and bloated. I don't know if my lungs will recover and I don't know when the operation will be, I may have to wait to the end of this treatment as steroids affect healing. I am still extremely positive but unfortunately also extremely breathless. I guess I didn't really want to do a full update on health as I'm just trying to focus on one thing at a time and not worry about the operation or if ill get any better, I just want to think about trying to getting better.

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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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