Sunday 18 August 2013

Dreaming wire free

I'm still recovering well, it seems like things are all heading in the right direction apart from a old annoying problem cropping up. My stomach does many magical painful things one of which is switching it's self off. Last night was the second time it's done this in this recovery. I was withering in pain and actually got to the point where I just though god this is never ending, the itu anethatist was brought down and then dosed me up on morphine until I passed out. A happy outcome. It got to the point where even my nurse didn't know what to do and all she could do was hold my hand and reassure me I was going to be ok.

Pain, pain is such a provocateur of emotions, how it can make you feel like your world is crashing down in seconds and anyone who has the power to take it away is simply a hero. I felt I truly didn't know how to keep going last night, surely I wouldn't keel over from the pain but I didn't physically know how I could handle any more.

I continue to dream of life wire free, house hunting, doing my sports therapy massage course, teaching pole, getting fit and having dinner with my hubby.

I can't wait to be curled up in our new house when we buy this autumn, surrounded by friends, family and of course Kia. It seems so idyllic and small but so tangible and perfect.

I'm hoping to be leaving hospital this week for a family wedding, whether that's full discharge or weekend leave we will see. I'm currently down to two chest drains and one neck line. I long for a full bath or shower.

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Wednesday 14 August 2013

Recovering well

I have to say I never thought four days after transplant I would be so well, so happy, so mobile.

See my recovery before was after a long decline where all my muscle mass was stripped from me, ecmo ruined my muscles my mind everything. It was a means to an end but a horrible one that got me to the other side in the worst shape possible. I now know more then every that a normal transplant where your in a good muscular state as I was because I had declined quicker this time, don't get me wrong my lungs were really gone, i had only a week or more left, but the muscle was still there and that makes such a difference. I believe in ecmo and think it does it's job well, but I want one day where people don't get that ill they have to go on ecmo, ecmo isn't how transplant should be. People should have this as easy as it comes because it's still hard then. Although I feel rather high on life, love and all the energy people are sending me. Thank you for you messages. Also a continuous thanks to my donors and love to there familys. my thoughts are always with them. Ill leave with a few pics for now and just this short blog. I'm off 02, out of itu, 2 chest drains gone, cycling on the bike for 15 minutes and moving really well. Also planning for home mid next week.
All my love blog readers, remember dum spiro spero = while I breath I hope.

Day I was told I was going to die in a couple of weeks, sharing a precious moment with my nephews, brother and sister in law to be.

Going to theatre.

2 days after.


High spirits

Standing. Itu no 02'

On the bike on the ward. No 02.

Proper pjs and had a nice clean! No 02 and happy.

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Saturday 10 August 2013

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).

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.

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.

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.

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


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


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Thursday 8 August 2013

'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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