Come play my game

What's the use in living if we never die? Life without death loses all meaning. Don't remember me forever but  smile when you see somthing that reminds you of me. Don't let your memories bring you sadness and pain for life needs to be lived with as much joy as you can. Share our stories when the moment arises, of fun , of laughter, of silly drunken antics and endless late nights.   Life is not infinite , memories are not forever, but our friendship and love lived on until there was and is  no you or me.

So last night I met one of my all time idols Michelle Visage !! If you don't who she is then I can't be fucked explaining, just kidding , Michelle is a judge on Ru Paul's drag race and also co presents one of my favourite pod casts What's the T with Ru. My friend Donna and I got tickets for the Christmas queen night which was a host of fabulous drag queens performing in glasgow. Donna contacted Michelle because we didn't get a chance to do meet and greet , mainly because when the tickets first went on sale we didn't know if I would be alive for the show no that sounds terrible but it's true. So Michelle put us on the guest list. We stood in the queue to meet Michelle and I promised I wasn't going to cry mainly because it would be creepy and also I'd spent ages doing my makeup. And then I was face to face with one of my idols and I had to thank her thank her for all the podcasts that I could escape to whilst I was in hospital thank her for h...

Survivor guilt  is a particular type of  guilt  that may develop in people who have survived a life-threatening situation.  I've never experienced survivors guilt before but I have heard the term many times when talking about transplant. But for me it's never been an issue.  I have always had an all encompassing gratitude to my donor and their family  but I also know I could not control my donors death and they saved me but I feel joy and thanks at that gift . But lately I've started to feel guilt. Maybe because there have been a lot of near death experiences this year and with this whole liver thing I'm becoming superstitious again, feel like I'm tempting fate and a little ocd. I know in my head that the way I act or what I do won't have any impact on what happens but sometimes I can't stop my head from thinking thoughts.  I'm having to wear wigs now as my hair is still falling out, my big sis looked at me the other night and told me ...

So this week has been eventful, last week I had lung transplant clinic and my Dr in Newcastle told me that he had, had to pill a lot of strings for the liver transplant team to see me. Reason being on paper, after this year I would most likely not be even asked for assessment but he spoke to his friend who is a liver doctor and asked them to just meet me. Ha no pressure eh, basically I have to try and show them that I'm ready for this, that my body after almost dying a few times this year will cope and my mind is strong enough. So how did it all go? updated on 15th December 2017 I was accepted onto the list, on Monday I go meet the surgeon and sign all the documentation. It's the best outcome though I guess I had hoped that they would tell me.my liver had made a miraculous recovery. But it didn't.  . . Everyone tells me (doctors included ) that having gone through a lung transplant this will be easy in comparison but I can't help but feel my journey wasn...

I need a rant so before I begin, yes I know I'm fortunate, yes I know people.have it much worse and mostly every single day this is how I feel. Unfortunately  though today I feel I need this rant off.my.chest, it's ok not to feel.100% positive all the time because I'm it human. Earlier this week I sat in my bed with dougie and just said I just want a bloody day where C.F. isn't all encompassing on me. The toughest aspect for me at the moment is my appearance, and I know that , considering I skipped death a fee times this year I can't expect to be ok. But I'm inpatient, I'm still weak, I'm still skinny apart from my protruding belly and I'm going bald. It happened after tx and I was told it was down to steroids and the stress my body went under so I'm not surprised but it's hard to look in the mirror and not be able to transform yourself the way you usually can. I feel.bad for.my husband , who I must say has told me so.many times ...

I hope this blog is coming to an end soon, what I mean is that I hope my time in hospital for just now is almost over and I won't have to try and update people on what's been happening. I apologise for the terrible spelling and grammar throughout this blog but my main priorities were to try and document what was happening in the hope that other folk going through shit would know it gets better. The changes my body has had to cope with over the past three months has been phenomenal, that if still works boggles my mind and that I am still standing here well . . . that was always going to be the case. I definitely didn't do this blog to gain sympathy or even to make people think I'm so brave or inspirational. I've states many time before in previous posts that these kind if words almost make me heave. I tried to.post the link to my blog the other day and ended up with five comments like don't give up , keep fighting etc. Now apologies if this were you who ...

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...

I haven't changed, I don't think I've changed. Everyone has been in my room today after returning from renal. The same question . . . . .how are you?  I have absolutely nonidea how I am, i suspect its going to take a few days before this sinks in but also I almost dont want it to sink in, I dont want to have to deal with this drama and im bored of the drama. I dont need extra added bonus stuff. So I say . . . . .I have no words  When this journey started almost 8 weeks ago I was just so grateful to be alive, that they had began to listen, that my team were going to try and find out what was happening my world was like wonderland. I had been given a chance again to live.  And as time passed I struggled, call it lack of sleep, but I started to struggle that I'm meant to have more of a purpose , why on earth do I keep bouncing back ? But then I realised it's because I'm kirsty harvey formerly Geddes and I'm made of strong mother fucki...

So on Thursday my doctor came to see me, all is going as planned, take more fluid pills and we will go as planned, he also said I'd have your feet elevated 24/7 but understand that we need to compromise.  So that was fine I sat all day with my feet elevated knowing I had eminem with my school and dear friend Ellen at night. Then the doctor came in and told me that my pottasium levels were very low. Only 2.3 when they should be between 3.5 and 5. This can cause arrhythmia of the heart so please don't go to the concert. I wasn't set on staying in, my pottasium had been low before, I was so looking forward to this and I'm a stubborn bitch. really I knew I was staying in but I said to ellen to ask if she knew anyone and when she said she woukd rather just come see me it didn't feel so bad. I just hated that my big plan was done. Ellen arrived and I said to her - is it so horrible I want it to rain. to which she replied it is raining and pretty bad ...

Yesterday I struggled, I had a wedding to conduct in Hamilton Race course which was wonderful but I struggled seeing my body the way it is. I'm skinny , I had a chip on my shoulder yesterday and I needed to brush it off but I just couldnt.. I was angry that I'm here, that it came to this, that my non stop visits to the hospital and stays I felt I wasn't listened to and we could have prevented the severity of all of this. I was tired and I disappointingly let my negative thoughts drown my mind. So I was a miserable old cow and it turns out that helps no one. No one, and I know people say you can cry and be miserable but I choose not to. It's not condusive to this journey, it won't assist me or inspire me or help me cope any better. I spent this morning in a slump and thankfully heard sister seen it. a pep talk was had, it didn't shift the clouds in themselves but then a visit from mum and dad did. Lots of laughter, oh no the sock gate and they stovies....

Today is Thursday 24th August, my legs are still weepy but the fluid is definetly shifting. I am by all means exceptionally skinny, but I'm very grateful to my head and my rose tinted glasses because most often I'm not aware of how skinny I am . I conducted a baby naming on Saturday there and dougie and I had to go and buy an outfit for me to wear as my stomach was very distended. As I stood in the fitting rooms with my husband beside me it was like the fig cleared in front of me , I could see my arms were skinny , I could see my stomach was distended and huge - to the point I couldn't bend thus dougie helping me change but then it became very clear. the extent of how skinny I was washed over me and a look of horror came over my face. I am scarily thin, I hadn't seen this, my head hadn't allowed me to see this WTF!? Everything slotted into place, why everyone was so worried, why everyone loomed at me like I was the walking dead, why people believed this w...

I haven't typed in some time. Weeks actually and so much has happened but to be honest the shock I think, took over, followed by sleep deprivation, followed by a hint of paranoia and a lot of adgitation whilst smiling. Whilst thinking through the floodlunggate of the other Saturday it dawned on me that I could have died, this could have been a blood clot and lastly I dug my head into the mud and didn't look up. I was so obsessed with the fact I had been able to breathe through it I hadn't thought, what if the fluid never stopped and I drowned. I spent the next five nights trying to sleep on a big  back chair, comfortable as it may be it isn't any bed but I lied to myself saying it was best to sleep there because my feet were still losing more water than Niagara falls . This led to me  falling,  where I awoke having slipped in between the two chairs and thankfully two auxiliarys came to my rescue to help pick me up. As usual I found this hilarious. I had...

It's taken me a few days to be able to digest my feelings about what happened at the weekend. So here goes, I had a wedding to do on Saturday which I managed and felt great  feedback was wonderful again and I headed back to the hospital. I was due to go to see Celine with my gorgeous friend Ryan but after my husband talking a lot of sense I sold the ticket to a wonderful woman who had a ball with Ryan. The liver doctor came to see me on account I was carrying a lot of fluid, so he changed up my plan and decided to give me albiunun on Friday night which meant my body was filled with a further 1000mls through the night and this was being carried on the next day. Anyway that's not the important part, this next part is. I took half a sleeping tablet and lay propped up in bed. I woke at 2am and for some reason my head was telling me it was ok that I couldn't breathe . best idea was to move to my seat and I'd  be able to breathe ok. I sat in that chair for half...

So usually I hate a steroid iv face but just now after being so I'll I'm loving it. unfortunately it has no reflection on my conduction as I am still stupidly underweight but it's nice to see a wee chubby cheek. I've had a great day today. Out to do wedding makeup for the beautiful Katie and her bridesmaids and mum. my hubby took me and I explained by legs were a bit dodgy but they were such a beautiful family and they looked gorgeous. I then headed back for the hospital and my sister Tracey came to visit, which was lovely cos I've missed her. AND she brought me some my little pony balloons. and I just loved seeing her. Then a surprise visit from my double Fi Fi and a visit from my girl Debbie armed with steak pie. I mean apart from the injections and pain and uncomfort and well aye everything is kinda great. I'm gonna post up some pics including card of the stay so far. In other news my kidneys are being a bit shitty so we have stopped all oral fluid ta...

So a bit of a harsh reality picture here. 16 kgs of #fluidretention can really fuck with your body. Sorry it's morning and you've probably spewed up now but actually it could be dinner or lunch it's all pretty gross. I've got a wonderful ability to rose tint things and im.not sure how many layers I'm using on this but it seems to be working ok eh,  I also wanted to take pictures and then share because although this isn't normal I also want others who may be experiving this to be able to see how far your body can come. Today I'm out to do makeup for a beautiful bride then I'll head straight back here, back on tpn as I have a few visitors tonight. waiting for my #tpn machine to finish and I'll be free again! ok so gross picture done for now #cysticfibrosis #transplant #fluidretention

Last night j slept for about 2 hours, I've been manic today, I'm scatty for  the steroids  I'm tired from the antibiotics, my mouth is covered in ulcers,  I'm so pulled from fluid in sore and agitated all the time and although today has been great and positive, yet this is such a rollercoaster. Mum and dad were up earlier and my mum made me mince and tatties (my fave)  We laughed as my dad spends the most of it taking the piss or being a fake grump wind up merchant and mum and I rise to the bait many of my nurses now know why I'm the way I am. It was a great visit  and then I hit a low when  they left and I try to keep myself busy. And then I thought I had a visitor coming but they never did or actually two but I'm also not going to chase people. I don't mind if I'm sitting here myself. I have plenty I can do however if you say you're coming just drop me a message and say hey can't do it. simple and with my emotions just now a message sa...

So this is yesterday's post update . l had  pretty gawd awful sleep on account my #tpn machine kept buzzing with bubbles in the machine. Bloody nuisance because then a nurse needs to dictate the time flicking a bloody tube until they can try and direct the bubble into the chamber, this can take up five minutes to twenty and the buzzing started at 2am and never actually stopped for a few hours until about 5.30 by which time I just got myself up . Steroid by Ivs means that I am packed full of energy as well as the fact I am on day 5 of #ivnutrition  and seeing as my body hadn't been digesting food or anything for weeks , possibly months well. . . . . . . I feel like someone on the island by bear grylls and I've just had a bit of food. I'm still weak as hell , covered in bruises, swollen legs but compared to what I was I'm feeling much better. That is wonderful but its also the case that we have no time line here and I need to try and get myself in a place whe...

Today has been an epic day, my brother in law Gordon collected me to take me to my wedding I was conductinh at the cruin which is on the shores of loch Lomond. I'm so huge now finding clothes to wear is problematic but it's a good thing I have a wardrobe that basically ranges from a size 6 to a 20 now. I got ready, gordon wheeled me down in my blue wheelchair carriage and we headed the 30 minute drive to the bonnie banks. I had really been looking forward to today's wedding. For one it was the last one of the weekend which meant I would have three days off to relax in the hospital, but much more importantly than that,  this couple when I met them completely inspired me, 13 years together this very day he seen her and knew he would marry her and since they have grown their family to five kids. I adored them because their lives were their families. They are both hard grafters,  he a head chef , she a full time mummy who also studied social care full time . Two p...

When you be arriving in style. In your sisters car for a wedding to conduct, obviously I smashed it but all thanks to Logan and my big sis who I couldn't have done it without them. Also so nice to see two faces I knew today in Bruce and Nicola, Bruce later helped me and my huge legs get up the stairs and to see their smiling faces made all the difference. I am now on my way back to the hospital. a little later but I'll get there, get ready and get hooked up to everything. TPN and steroids . Telling what's been happening to Bruce and Nicola I'm very matter of factly but like I said two, three weeks ago I was thinking this is it.  8 years I've done great and I've lived, and boy I've lived . but here I am in recovery again with so much hopeful life ahead. #cysticfibrosis #wedding #lovemyjob #transplant #doublelungtransplant