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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The honeymoon

This was written on the 14th as I flew out to gran canaria, I had an amazing time and caught a beautiful tan!

As I sit here, I'm on my way to my honey moon. 1year and 10months married and 4 and half years together. Enduring more than most couples. I want to tell you what my marriage means to me. Having been through so much together and had a brilliant documentary made about us, some think that maybe we are the perfect couple? We certainly aren't, like most couple we fight and argue and we have had some extremely tough points as a couple, points where perhaps we've even wondered if we are right together.

As I sit here though, I cannot imagine being without this man and I always said that marriage to me doesn't mean we will be in eternal bliss together a bubble of love. It means fighting through, battling to maintain the love. When you are first together you love each other faults and all, it's easy, you are so wrapped up in the sparkle of the shining new relationship, but marriage mean carrying on when the sparkle is not there to fool you and deflect all your partners fault. It means patience at time, when it is not often there, it means being friends and talking through the faults. If a problem arises you can't just say well that's it it means working through. I have a real beliefs that my marriage will last, like I say not because we're perfect but I hope that we will always want to fight and battle though. Sometimes we have to remind each other of why it's worth fighting for, why we are worthy of the others love. When I sit back and really think about the man I married and why, I remember, his patience for my anger, his kindness, his caring nature that has nursed me and how he knows me, he knows everything about me and loves me because of it and in some ways despite it. His humour and silly nature and how our silly natures fit together. We certainly have this unspoken language that only we share. He is the one person I have In trusted with every piece of knowledge about me, things I would share with no one else. In all of this there is a deep love for each other and in that we find our own eternal bliss not one that was made up in a book but a real one with all the grit and roughness of life. One that far surpasses fiction.

I would also just like to say I love you Stuart and I really do believe if soul mates exist then I cannot believe there's anyone out there who would fit with me more perfectly.


So nearly 2 years since we were married here's our honeymoon and first week away since tx!










































Dedicated to my gorgeous husband.
x
I will be updating on the going ons since I have been back as well it's been eventful in some good and not so good ways.

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The big giveaway

Ok so I'm currently in the process of sorting a blog giveaway. The giveaway is designed for people who spend a lot of time in hospital with a long term illness or have a big admission coming up. It's a hospital survival package! There will be 10 of them, each filled with hospital essentials of the highest quality, things like batiste dry shampoo which they have kindly already donated along with cute mini brushes. There will also be lots of smellys, deodorants, moisturisers, DVDs, sweets, chocolate, massage oils. I'm hoping this will be the most amazing package ever, filled with love and well wishes to who ever receive them.

So to tell you the back story to my project, when I was in hospital before my transplant, my fellow cfer and good friend Elly sent me a mini package filled with little bits and bobs for the admission. It had a note explaining the importance of each item and I have to say it was an amazing idea and gift. Me and Elly discussed the present and said she would like to do it on a larger scale, so I hope she doesn't mind but iv stolen her idea, well not stolen, borrowed. The reason being I put a pack like this together for my friend Kate, she was very ill at the time after having what I describe as a horrible build up to transplant and a very complicated road after. I took the package into her at harefield and was extremely happy when I saw a smile from her, I hope she doesn't mind me say but a rare sight at the time with all she was going through. I'm glad to say Kate is doing much better and I'm forever proud of the smile that pack caused.

So if any companies are reading this, please contact me on kirstietancock@icloud.com if you think you could donate towards helping someone smile. You will certainly make me smile if the generosity shown by batiste was mirrored.

I will put details of how to enter my giveaway at a later date when the packs are all together and I have photos of all the fabulous goodies.

Once again I'd like to thank batiste for restoring my faith in large successful company's and years of service to my hair when I haven't had the strength to wash it.

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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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