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

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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