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

Re transplant, palliative care medications

Things the last few days have been increasingly hard, I'm having some extremely hard times with my breathing, points where I feel I'm going to go Into respitory arrest and my anxiety levels have only made it much worse. I had an exercise test yesterday on 2litres of oxygen, of the 6 minute walk test I managed 3 minutes. My heart felt like it was going to explode and felt like I was going to collapse, my sats went down and my heart went up. So for walking I'm going be on 4+ litres of oxygen and resting I will remain on 2+.

Today nonnie my consultant came in, my breathing wasn't great but better then it has been. But she instantly noticed how bad it was, and said she could see the anxiety and worry in my face. I could certainly feel it. I was started on oramorph 2 days ago which has slightly helped, but as of today I'm going on to MST and also starting lorazepam all to help with the shere effort of breathing and to try and bring down my anxiety levels over it all. These medications all come under the palliative care meds. For me this is all very familiar in April of 2011 my conversations were very much the same, although I was already listed for transplant. Next week they will all discuss whether I can be re transplanted with the surgeons and the whole of the team. I think it's obvious I am on a slippery slop moving at a rate to me that is even faster than last time. We still have the hope that radiation will act as a stabiliser but I'm not willing to put all my chips in one basket and therefore feel the discussion for re transplant is very much appropriate now.

How do I feel about this all? I feel scared, I feel tired, Im praying it will all come right but again I find myself making lists of songs and poems I wish to be played at my funeral. Somewhere I know it will all come right in the end, how I'm not sure and that doesn't mean I will make it but I just know it will be ok.

Remember where there's life there's hope!


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Sleepy girl

Radiation is exhausting! I feel very tired most if the time, I always thought it would be quit easy, I guess those who go through radiation are usually people with cancer and they also go through chemo so they don't really mention how bad radiation is because comparative to chemo it's a breeze to them. I have to say I hold my hat up to anyone who breezes through radiation and wish everyone an easy ride! To me it's exhausted me beyond belief and I am one tired sleepy girl. Part of my wonders whether I choose to sleep because when I am sleeping life's a little easier at the moment, my head doesn't pound, my body doesn't ache, the sickness is gone, my heart is calm and my breathing i can ignore and dream to a time when things were simpler. I guess I wonder whether I'm a little depressed, or whether it's just the treatment? I guess time will tell.

I'm missing my home now, but I know when I get back home things will be hard, it's a place that I realise more then anywhere that my lungs are so badly scarred now, because things are so much harder around your own home, there's stairs to climb, things to be done and you tend to move around alot more and then the breathlessness kicks in.

I try to not feel sorry for myself, but I am human, I can't help but sometimes think why me, why stu? I feel for him, my mum and everyone else around me. I feel like I'm a constant drain on them, in need of so much help and time. Last weekend my nan came and looked after me, that's never right, my nan is a strong amazing lady but she is getting old and deserves to be looked after now, I should be helping her. Instead all her time and effort is spent worrying about me and doing things to help me, my mum and stu.

I'm sorry to sound so down, I'm not really. I'm smiling, I'm still happy and I'm still loving life, but there are these moments, these rare moments when life is overwhelming and I'm filled with dread. I guess my blog could give you a clouded view of me sometimes, I write here when those moments come but mostly I still feel blessed and lucky. I'm lucky my family love me so much that there here to do so much for me and I guess I have to remember that must be a reflection on me some how, they must love me this much because I am a good person and a fun person. I just hope I can carry on being enough of a good, fun, loving person that they want to be round me forever and carry on making my life so amazing.


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Breathless and scared

The radiation has already taken its tole, I feel weak, tired, sick, my body is exhausted and all I can do is sleep, but part of me knows that exhaustion comes from the fact I'm now very ill again. This chronic rejection is so fast, everyday I wake up and feel noticeably worse, today just moving leaves me breathless. I haven't had the puff for a shower today, or to even get changed from my pjs. I'm scared. I try not to think about it, not to worry, sometimes it seems like it all happened to quickly that it hasn't sunk in yet, then I get these moments when just walking to the bathroom feels like a mile again and I know this radiation has to kick in and fast.

A friend of mine who was also diagnosed with chronic rejection but at the moment there lungs are unchanged told me about how they asked how long they had left, I didn't think to ask this, but now I sit here and I guess I didn't need to ask, if this radiation doesn't stabilise me, not very long. If it does well, I still can't imagine with my lung function so low that that would be very long either. I know it's sounds depressing and pessimistic. I'm not trying to scare anyone, but these are the thoughts your faces when everyday things are significantly worse then the day before.

Many people have asked me about re transplant, it's not something that has been discussed in length, more slight whispers and mentions. For me, all I can say at the moment on that one is I'm devastated. I don't want to give up these lungs, they were so perfect and beautiful, they worked so well and then my immune system destroyed them, my old lungs I hated and couldn't wait to give up. These I love, they have done so much for me and I feel emotional attachment to them In A sense. I guess that's all I can say on that one as I don't even really know if it's a option.

I will leave that post there for today and leave you all with my emotional turmoil.

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