Come play my game

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

I've had such a wonderful day .  Back to conducting weddings with the help of my husband who as always has been my rock. This morning my doctor was rather positive so much so he overwhelmed me. I'm on the road to recovery , it's going to take some time. my fluid increase means I have at least 16kgs of extra fluid sitting on me. My throat and mouth because of my rubbish immune system is covered in Candida which is sore and ulcerated but I'm here. I had a phlebotomist in today talking  away to me and she just stopped and said "but you're so happy" eh hen course I am, I've used about 4 lives already but hey I'm so grateful for everyone coming together to help me. it's going to be long, I can not wait until my legs aren't blistered or my ads is so big I have a bigger kadunk kadunk than Nikki Minaj but I'm here and I'm so very grateful. don't get me wrong it's shit at times too but what's the use in being do...

When the schoolies come to visit but you don't want to look ill so you go for the mental look  instead. so nice to have a catch up, babies, proposals , amazing sparkling rings, new developments and loves and simply Devine banter . Thank you ladies xxx

My very own milktray man , all because the lady wanted pizza  best husband award goes to Dougie Today didn't start so well, my doctor point blanked told me we couldn't do weddings this weekend. I understand why. I'm on this tpn  and I need to be hooked up to this venflon until they can get a picc line in but this isn't likely till Monday. IV steroids to blame cos i can I burst into tears , I know the severity of my situation that it's ok just now but an infection could change that however my weddings are my heart, I can go and forget I'm a bit off, no one knows when I take to the stage that anything like this is happening and it gives me my sanity.  I simply adore my job. Dougie brought me pizza, my doc on ward and macgregor sorted out a picc line and all going ok with my legs and if I can get a chaperone for each wedding I should be able to go work my magic. which I am so very grateful for. My team are simply the most brilliant group, they work tog...

pussys on our head

Rock on old yin Positives about today - My fave doctor told me he was much happier today than he was about my situ than yesterday. after he called me very sick yesterday I told him this morning I love you for your honesty but a blatant simple opinion like that helps no one. I'm not sick I'm getting better positives - with my bowel and stomach and basically my whole system inflamed I'm not digesting things so I've finally been started on tpn "Total parenteral nutrition (TPN) is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. " positives - I've managed to eat some crisps and drink juice. I've gotten on with some work and I did my hair and makeup. also made my day today that horrible histories have a new series YAS! boo parts - I had to get a picc line put in as a midline is not big enough to administer the tpn but I've been assured I'm on the ...

Last night was not a good day , I was exhausted, I was in an incredibly amount of pain with the leg who has the HUGE blister on it and no amount of diversion techniques was helping it or oramorphe. So at 4am a wonderful doctor came along and fed me more pain killers, she gave me one with a sedative edge and I was pretty much in the midst of saying - I doubt I'll sleep when boom I was out. Today I sent an email to my amazing doctor letting him know what had happened over the weekend. My lungs are coughing up stuff, my legs are incredibly sore, I'm not getting any food and so he waltzed in today and the first thing he said was . .. .he turned to my nurse Andy and said kirsty is really sick. I burst into tears but more from frustration, I'm under no false pretences or ignorance , I know I'm not well but. . . . . .words like sick or ill well they can fuck off. I don't have time or brain space to think like that I just said I'm in the right place and tha...

So last week they decided that I should get my.bone marrow checked. Bone marrow is simply wonderful, it can answer a lot of questions and possible new avenues . The main ones for me being why in the past three months have I needed 5 blood transfusions? So I thought i would  let those of you out there who maybe will be getting this done soon or it's on the cards my experince. The doctor was lovely and thankfully she just turned up at my hospital bed so I never had much time to react either way is nerves or scared. We chatted away as she asked me if there was anything I would like to know to which I replied. "Nah nothing, it needs done so if there are side effects after I'll just deal with it. " She did explain that she would be going in via my pelvis, but first they would inject local anaesthetic  in the area before she would go in with bone marrow procedure step 1. Step.one required a lot of pressure and pushing and because I have so much fluid on my bo...

So I bet you've seen a blister before but check out the size of these. Yesterday I got back to ward with this mammoth blister, unfortunately being a Saturday not too much can be done but the on call doctors came and popped the worst ones. They have since filled again and it's really not very pleasant at all however it's superficial and tomorrow is monday. I had some small blisters on Friday which my doctor said was due to lack of nutrition so hopefully this week we will get on top of these. #embarrassingbodies #blisters #gross #fluid #cysticfibrosis

nurse dougie to the rescue. I really struggle with not being independent and I'm so very grateful to my hubby who has helped me so much. Of course I tell him how much he means to me on a regular basis with such thoughtful words like  If I had to rely on you I'd top myself and a personal fave your are a right shusband(shit husband). I'm ok just now bossing about and asking a hundred favours of him because I believe this is only temporary and like he has told me I'll have plenty time to.make him breakfast, cook dinner, make tea, look after him once I am recovered. i had a really tough day today, slept from last night till 5pm and woke to my creepy as hell sister taking photos of me asleep (looking dead if I'm honest) beside her. She is mental. Then dougie arrived and has taken care of me . When the shit hits the fan I'm proud to say I have a lot of friends and family who I bore the shit out of but still are always there beside me. #cysticfibrosis ...

This concoction right here is oramorph a liquid morphine . I haven't eaten on weeks, yet I'm so full of fluid and inflamed stomach that I have no space to eat or want to. unfortunately everything do eat including my my feed is by lack of a better word running straight through me. I'm tired and sore and my stomach is often so inflamed and angry that this little potion gets me through the day. As it turns out it seems I haven't been digesting anythingproperly including my steroids so I'm currently on iv steroids. I'm almost two weeks in the hospital with this visit and whereas ordinarily I come and go as I please I'm truly not in a great way (not in a deathly way just yet) but it's a struggle to stand and walk. I can't take too much oramorph as it will cause my bowels to stop moving which I already have issues with so it's more of an - can i handle this pain or is it too much and I can try and counteract the effects? #transplantjourney #d...

Most of you know for months now I haven't been well. I returned from a holiday in New York filled with an excess of 5 lbs of fluid, and when I went to hospital this doubles to ten as my team tries to work out what was happening. My kidneys were strained , my liver was reacting badly , I was fatigued and well we didn't really have answers. We moved about on fluid tablets which  got rid of the fluid I was sent home and was back up in a week severely dehydrated. There has been so many guesses, fumbles, tests, blood tests out my ears that my veins have began collapsing and still we never seemed to come close to an aanswer. this instagram is my journey. I'll be hashtagging stuff from the past it's 5am the now Andi don't have the strength to go over everything but let's just say There have been moments where I'm not sure if my story is coming to an end or not. and I've told my husband that if that were the case I don't want him to let anyone say ...

hi everyone So I worked out that since February I've spent around 9 and a half weeks in hospital for lots of different reasons. however I had mentioned my night blindness and it turns out that I am vitamin a deficient. symptoms include night blindness and neurological problems ~ which maybe explains why , when I walk I can often resemble a rather drunk person. I had a holiday booked for dubai for four nights, and it was hit or miss whether is was going to go. my eyes were burning and so I went to the eye hospital who told me that lack of vitamin a had caused my eyes to dry out so much my corneas were now jagged and scored and that I had also managed to get myself an eye infection called herpes (I'm sure many of you have heard of it but I swear I never got it that way.) eight years I have managed to avoid this virus which is very common in people after transplant but now I will carry the virus which will lay dormant for the rest of my life. and it can cause damage to.my...

I got home last night, started on antibiotics and all is good in the world again. Big thank you to my sister Julie managed to talk me down off my emotional rollercoaster when my blood results came back a bit off with my haemoglobin  (turns out it wasn't a correct reading when they were re did later). I managed to convince the wonderful doctor to let me home last night and I slept like a log. So all is sparkly and good again

I feel like a broken record. Today I had to phone the hospital, I've put it off and put it off but my chest seems to have gotten a bit of an infection so I'm spending my afternoon conducting a wedding before heading up for a doctor to have a listen and hopefully send me away with antibiotics. I know I'm being optimistic. I just keep reminding myself that I'm very fortunate   to be alive, so these are blips. Nothing too serious , but trying to get numerous chronic conditions to behave all at once is proving to be tough at the moment. It feels like a giant domino line up and hopefully I'm coming to the end of it and I'll get some time to spend at my home.

Just a little update. I'm a whole 10 days out if hospital. Unfortunately my eyes are returning back to not being able to see in the dark and I suspect it may be due to the spirolactone. So I'm phoning the hospital tomorrow to ask for a blood check. Mainly I want to be sure that if I am very dehydrated (which is what occurred previously) my kidneys are not affected. On a better note I went to see left field on Friday with my fabulous friends Susie, Ewan,Lindsey and Ajay. Then last night I had such a memorable night seeing kiss in concert with my buddy Alana. I'll keep you all updated. I'm hopeful I can. Stay out of hospital. Kirsty

So last night Debbie and I went to the festival of the dead, my wonderful husband warned me not to burn myself out which is so true but I just wanted to dance. I'm so glad we went out , it's the first time I've had any energy to dance since February, the first time I've been out and not counting the minutes until I feel like I've tried to live outside of my illness. I danced, my legs are now pretty swollen but I was also able to see in the dark again. I ended up with night blindness  for some time.  basically when lights were low i couldn't see anything at all,  I couldn't make shapes and the last time I tried to go out debbie had to direct me and hold my hand as I struggled with such darkness around me and with trying to control my anxiety. It's a bit of a cliche but it finally seems like the light is visible at the end of this tunnel. I have to go get my bloods checked tomorrow and my anti rejections have been altered slightly . Kirsty

I hope his cookie conveys everything I want to say Like Thank you to each of you for making my time in here (which lately has been a lot) bearable. Thank you for being not only wonderful care Huber's but friends too Thank you for bringing a smile to my face even on my toughest days and a laugh too. Thank you for reassuring me and giving me the gift of insight that when the time comes and I am very ill again, I know I will be surrounded by the most dedicated and caring group of people. I think often it's easy to forget what an impact you make on someone's life, even in a brief moment and so many of you have impacted my life in the most thoughtful and fantastic way. You are all so much more than staff and I feel extremely fortunate to have such an amazing team of kind, caring , and funny friends take care of me. Love Kirsty Harvey

So some good news, my liver scan showed that the blood vessels aren't affected which is great news and there are no clots. Bloods done today and I've asked the nurse for results which I'll update soon. My fluid tablets were doubled today so hopefully bloods tomorrow will be ok and then there is a chance I'll be walking out the doors of this hospital once again. The staff as always have been like my friends and family. I'm now a regular face and as stupid as it may sound I miss a lot of these  people. They make me feel safe the hospital makes me feel safe. But I also can't wait to be away for longer than a couple of weeks. In other news I seen my baby today( my nephew) he brings sunshine into my life and I love him. And my doggies oh and my Dougie too.

So today the liver doctor paid me a visit. Thankfully the damage at present to my liver is not near the criteria for a transplant but doesn't mean that it won't be in the future. And thankfully because my lungs are still sparkly it could be an option down the line if they continue to be so. So the plan of action is to try and increase the fluid tablets, whilst not severely dehydrating me and making sure that my potasium levels don't go so high they cause damage to my kidneys. It's all a bit of a see saw but it's good to hear that we have a plan. They aren't sure why my haemoglobin is plummeting but the next few days should shed light on this. I'm home for the day with my doggies now

Hey guys I've started this page as most of you know I've been in and out he hospital recently. No I don't update often on my personal page as I don't want my couples to  worry. So I've added you because I'm thinking maybe you'll want an update and im a lazy bitch who doesn't want to write to everyone and fill them in. For one- I'm not dying, my lungs are great, my liver is acting up as well as my kidneys a little For seconds - they are trying to find the source, which could very well be my anti rejections. Ok so I'll keep you updated when I know stuff. There isn't a magic cure , nor will there be a wonderful answer. Please don't think me rude if I don't write back every time someone asks how  I am. Sometimes I don't even know how I am, not in a pity party way just in a , I am how I am and I need to deal with it. There is always someone worse off so don't be forgetting that. Ps thank you to those who give blood...