Thursday 20 June 2013

2 year wedding anniversary

On Sunday me and stu celebrated our 2 year wedding anniversary. We stayed in a lovely hotel over night in Bristol and had a nice meal together. I'm grateful for every moment I have with my hubby but special occasions like this we think back to when we got married and how close we came to losing each other. The reason I got to this anniversary was due to the kindness of a stranger and there loved ones. So with every breath I thank them and on these special occasions I always say a special thanks. Sometimes I look back over these last 2 years and they seem like a dream, almost to good to be true, did it all really happen?

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Saturday 8 June 2013

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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Saturday 1 June 2013

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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