Come play my game

So just to add to the extra  dramas,  on Saturday my doctor arrived to inform me of some news. But first on Friday I spiked a temperature- over 39 degrees so we started antibiotics and they removed my pic and midline as it was likely that one of these were maybe to blame , and we were hoping woukd be discharged at the beginning of next week. Here I thought everything was ok I got cover for my wedding on Friday as I felt  terrible and it was getting to close for my doctors to make a decision. I mainly rested on friday and my temperature came down and by evening I was feeling good enough to eat with a visit from my mum and dad. I wake on Saturday ready to face the world, feeling ok, no chills like Friday morning but when my obs were taken  my temperature again with high and the consultant  arrived to inform me that I had sepsis. Sepsis! I'm not sure who was more surprised by this news!? What the actual f*** , I had thought I was ok and eh I h...

I'm struggling today , I'm super tired and the whole liver transplant is a bit overwhelming. They are collating all my information together to send to the liver team in Newcastle and I'm worried that I will be too complex a case for them to consider me. As my doctor put it they are very used to people who have ruined their liver with drink or overdose and thus there is a lot of psychological issues that woukd need to be addressed whereas I have already went through the issue of lungs. I'm told that if I were to be fortunate enough to be listed that the wait would be very different, that they only match blood type as opposed to blood, tissue  size etc that happened wuth lungs. I can't help but feel I've been so incredibly fortunate so far that this isn't going to be the road I travel down. I hope I am wrong , I hope they look at my case but also hear from my doctors that I am tenacious, that I have a lot of life left in me and that I will look after...

My doctor walked into my room on Monday and said "we'll be looking to have you discharged by the end of the week or the beginning of next week kirsty" And I burst into tears. It's not that I don't want to go home, I want that more than anything else, I'm sick of the travelling, I'm sick of not sleeping in my own bed but I've also had to get myself used to being here for ten whole weeks and for them to now try and discharged me just doesn't feel right. it is true that most of my treatments that need nurses etc have now ceased but my bloods are checked every monring, it's been such a journey I don't know what the next steps are. So thankfully after a Monday of anxiety Dougie joined me on Tuesday morning and we spoke with the psychologist about how awesome we are and our coping mechanisms with everything that's happened and then my doctor arrived and joined us for a chat. A chat which completely changed my view of him , he expla...

Yesterday was Logan's 2nd Birthday, I woke up.seen the doctor who didn't really say much apart from mention another lung function to which I said no because my stomach is still huge and I don't think it woukd be beneficial for me to see the same numbers. I got a vitamin b12 injection, though no nurse wanted to administer it because it's inter muscular and meant to be very sore. My wee nurse was so worried about hurting me and then I felt nervous because although I knew it wouldmy be bad compared to what I've had I also didn't want to show anything apart from a smile so that she didn't feel bad. So here is hoping it makes a difference There are talks of starting me on a drug called EPO,  it helps.produxe red blood.cells and was also one of lance Armstrong's super drugs he was given so expect me to become a right asshole on a bike. Seems the problem with my blood is that although I'm producing red blood cells(my bone marrow sample showed this) t...

So on Saturday I went to Edinburgh to conduct a wedding for Ruth and Liam, such a great couple and thankfully no one congratulated me which was nice. I drove back and awaited the arrival of hubby and sis in law Tina. We ate food we watches some tv we caught up and then it was tap time. The liver consultant had said that with the amount of fluid in my stomach it would take forever for the drugs to get rid of it so instead a small tube would be placed into my stomach to drain the fluid out. Claire the doctor came along and inserted said tube, at one point I turned just in time to see the god awful huge needle she was holding in her hand. Don't worry she said it doesn't all go in. Ha ha ha ha ha fuuck! ok I've had a lot of treatments this visit but this needle was HUGE . So lidocaine the stingy bastard first ,let it settle in and then the pressure of a tube going in between your skin and organs. and then . . . . well nothing , it was attached to a bag like the on...

I'm not entirely sure where I left off but I'm pretty sure it involved me doing too much and making myself tired Im.severly aneamic, i keep.forgetting that most people.couldnt function on the haemoglobin level I am at and I also need to cutt myself some.slack so this week I've tried to Basically not heading home eto mop floors and instead heading home to chill onnthe sofa with the dogs, cook dougie some food then head back here. My stomach is now absolutely full of fluid and this week they up d my water retention drugs to find that it wasn't making too much of a difference so today hopefully I get a tap put into my stomach and this fluid is drained away. I went for an ultrasound and ordinarily they would mark where the pool of fluid is however they measured a pool 7cm deep and another at 8cm deep. They concluded that they could put this tap.anywjete and it will get fluid. I hope I don't get too nervous about it, I also got a b12 injection this week but ma...

Going into week 9 and I've become aware at how much I've missed out on. Last week was tough, I was given more freedom when my afternoon drugs were ceased. With that came my freedom to head home spend time with my dogs and try and do normal things. My only problem being that I began to think things were going to hit the fan , that maybe I'm coping so well because actually I'm on another bloody planet and all of a sudden I'm going to hit the ground. Dougie has been amazing, he knows me better than unknown myself and he let's me have my spurts of tears and then laughter. My haemoglobin in still low, my stomach is still huge, so huge in fact I was told congratulations twice yesterday and then one lady asked when I was due and to save her feeling bad I said two.months before rubbing my liver disease stomach lovingly . You've got to laugh haven't you, you've got to keep.positive but fuck sometimes it's trickier than others.

Life is not a dress rehearsal So all last week I figured I was in week eight but alas today marks week eight. Still so.many questions and no end in sight but I had the best sleep.last night and today I have been taken off an IV that was fine 4 times a day so I am now available mostly after lunch. Who is up for some spa days? To be honest I just want some normality, after my recent post maybe I have changed, I'm worried I won't be able to adapt back into my life seamlessly but I guess that's to be expected. and there is also dougie who has to get used to this wife being back. Though I'm getting aheadbkf myself. I'm still carrying a lot of fluid in my abdomen, my legs are much better but the unanswered questions are mainly. Why am I not making blood ? I never received or needed blood apart from during transplant and then since February I've had over 8 pints. At first they brought me up gave me blood and then went me home and never questioned it so I...

Yesterday I was sent for a CT scan, almost 8 years since my lung transplant and they have continued to be the most magical gift I could have ever asked for. Unfortunately there has been changes in my xrays since the flooding incident which means we need to get a CT to have a better picture of what the hell these changes are. It could be infection, rejection, scarring but we will see. Lung function on Monday hopefully and we will get a guide line. Yesterday I had a great day, back to my role as celebrant to conduct a wedding for a gorgeous laid back back couple at glenskirlie(wedding venue here in scotland). Now unfortunately I was on a 24 hour copper check which means I had to store all my urine in a giant tub  , don't worry I never needed to pee at the wedding. I then went home ate some and sat with my dogs before heading back to the hospital. 6pm Ivs were done before I headed to mum and dad's as it was my dad's 61st birthday. Indian food all round and the...