3rd and 4th calls!

George's mum again, apologies as this will be a long post but it's more for George's benefit as most bits are a blur to her!

George's 2nd call on Saturday really took its toll on her. I know we have said she has "end stage" CF but what we were dealing with here was something else, she literally could do nothing but lay slumped over her hospital tray on a pillow and couldn't even hold a conversation or lie back on her bed. As the day progressed her sats dropped and heart rate started to again creep up towards 140bpm

Next day was more of the same and as the afternoon progressed we became more and more anxious as her sats continued to decline along with her bp and heart rate remained high, she was becoming quite unresponsive other than the odd thumbs up when asked a question. Later in the afternoon the Drs came to see her as her sats were again dropping and her oxygen was increased to 15litres and Echo, X-ray and ecg's were done to see what was going on. It was discovered that she had fluid around her heart but the Drs thought the main problem was the infection in her poor lungs. She was asking for almost hourly nebs to try and relieve her breathing as she was just not able to relax.

Next morning she was feeling a little better and around 10 her lovely consultant Simona came in with another surgeon to say there was another chance of lungs and their team were off to see if they were suitable for her, another patient had been brought in as back up.

Again we had the process of preparing for surgery which was exhausting, it involes washing from head to toe in surgical wash and while on bipap with a raging temperature and attached to various ivs constantly for antibiotics and blood thinners was hard beyond belief even with my help she struggled. Then then long wait continued. Hour later the surgeon returned to say that the lungs were simply not the right size for George and as she had also to recover from heart surgery after transplant it was just too risky to reduce their size for her but they would still be transplanted to another patient which really makes the disappointment so much easier to take.

Next morning I had a text from George at 6am to say she was awake and wanted a thai curry for breakfast so I got to her room as soon as I could where she was fast asleepshe was then fast asleep  so I chatted with her lovely nurse and got her morning tablets and nebs ready and mentioned  that I would heat her up her curry when she woke up. 5 minutes later her nurse and the nurse in charge asked me for a word, me bring me immediately thought I had done something wrong! They explained that the transplant coordinator was on his way to see us as in the early hours another possible pair of lungs were available. This was the 4th time we had been here so George was left to sleep while we waited for news. When she woke up and was told she was very calm as we all were we just assumed this would be another no go as with all the others and was mostly fed up that she couldn't eat.

As the morning progressed we got trickles of positive information it was again a heart beating donor so the team were already in place to check the lungs would be ok for George, the poor transplant coordinator seemed really flat out and we later discovered there were 4 transplants that went ahead at the same time so the poor man was trying to get around to 8 different people. At around 1pm Aron one of the transplant surgeons arrived to say that it was going ahead, everything was looking good and they would have George in theatre by 2 and were expecting her new organs a few hours later but they had some work to do repairing her heart before she could recieve her new lungs. Then another surgeon Bart arrived and they both had a little light heart chat with us all as George had met them both before she asked can you take pictures of her old lungs, both surgeons said they had nightmares about the lungs they remove they are so awful but promised if time permitted they would. George was started on her first blood transfusion as she was severely anaemic and would clearly be losing a lot more blood during surgery. It was so strange as when you are waiting for a transplant one of the things you can't have is blood as it raises your antibodies and makes you less suitable to find a match so all I kept thinking as the first bag went up was I hope they don't change their minds!

Next she was given her first dose of immunosuppressants so this is when we all knew it was really happening and it all became a bit surreal, the theatre staff came and we all went off to theatre reception but not before she recieved lots of hugs and "good lucks" from the amazing staff on Rowan ward they really gave her a moving send off. The theatre reception room was very calming with subdued lighting and a strange fish tank, she saw the aneathiatist and we were left to say our goodbyes and she was taken into theatre or her new lungs.

Since George was first listed for transplant I've have always thought the hardest part for me would be while she was actually in theatre and I expected I wouldn't be able to leave the hospital grounds and would be an absolute wreck until the operation was over but it wasn't like that at all,  lee and I both left and went for lunch and then met close family and a very good friend of George's in the pub next yo the hospital around 7(not because we were having a great time drinking I hasten to add but anyone who knows Harefield hospital will know that after 7 when the restaurant closes there is no where to sit or get a coffee) we were all surprisingly calm chatting about some of George's antics over the years until about 10pm when lee and I both became very edgy as we knew we should be hearing some news soon so we headed back to the hospital to wait for a call. It was just before midnight when lee took the call to say she was out of theatre and we could go and see her, we couldn't get to ITU fast enough!

We were taken to a family room where her surgeon Bart explained how her surgery had gone. It took them as long to remove the stent from her heart as it did to do her lung transplant and they hadn't repaired her faulty heart valve as they thought it was safer to leave it alone and would have to see how she gets on in the future. Her lungs were about as bad as they get in patients with cystic fibrosis and were completely stuck to her chest wall, removing them had been a very difficult procedure. Due to that and the fact that she had had to have lung reduction they had problems stopping her bleeding and we were warned they would have to see how she got on overnight but felt they had done all they could. He was so lovely explaining everything so we could understand and considering he had been in theatre for hours and must have been exhausted he made us feel he had all the time in the world to answer our questions and told us he had taken a photo of her old lungs she was so desperate to see( so look forward to that when she takes over) He then took us in to see George.

Although she had been in ITU before this was completely different, it was like walking into some sort of space station, she was in an isolation room and had whole bank of ivs going through her, there was a line attached to a monitor straight into her heart, a ventilator, 4 chest drains and a strange machine that was pumping some kind of gas into her new lungs, the lovely Bart did explain what all of this was doing but by this point I was completely unable to register what he was saying. She just looked so different, her eyes and face were swollen and she just looked so fragile attached to all this equipment. We then left and hoped we wouldn't get a call in the night to say she was back in theatre. It's very strange when someone is in intensive care you go to bed every night hoping that you have no calls and every morning everyone waits in a small conservatory at 11 and then you have to buzz through to see if you can come in, often you are told you will have to wait but not told why and in my head it was always because something awful had happened when in reality they were just carrying out a routine procedure but looking at everyone's faces when they were told to wait I'm guessing I'm not the only now who thought that way.

The days after this are all a bit of a blur and I know George will not appreciate that I didn't keep a close record of what happened when but it was so emotionally draining for myself and lee, probably worse for him as he was also having a daily battle with the m25. We were told after 3 days that they might try to wake her up and extubate her but she would need to show she was taking some breaths for herself in between the ventilator breathing for her, it turned out it took 2 more days for that to happen and on day 5 we walked in to find her awake for the first time and she just started crying. It was clear unlike last time when she was extubated she was still highly sedated and not really aware of what was going on. It was so strange to see the change in her breathing as she was now taking such slow breaths compared to her rapid breathing before transplant and her body temp was 35 degrees and they were wrapping her in blankets to try to warm her up where previous to transplant she had a constant very high temperature but dispute this she was doing really well and they hoped she could be moved back to Rowan ward the next day. Next morning when we arrived to see her we found her face had completely blown up literally like a balloon, one of her 2 remaining chest drains had slipped out and had pumped air into her tissues ( it's called surgical emphysema) it was so scary to see her like that but we were assured it would all be fine but would delay her transfer to HDU. During her time in ITU her 2 surgeons came in often twice a day to see her and were genuinly happy to see her begin her recovery, they are a very special bunch of people at harefield. One of the radographers who George had met several times on the ward pre transplant came to take a chest x-ray and said she was really sad to have to see her like this back in ITU which I didn't really register, then she heard me talking to her nurse and got quite tearful as she hadn't realised she had had her transplant just thought she was in ITU as she was declining she was so happy she had her new lungs, such a lovely lady. 

2nd trial run!

So last blog was a bit brief. I started writing it a few days ago and then quickly finished it today ready for what could have been the most exciting post...turns out not so much. Better luck next time! 

So my day started very early, 4am to be precise. I have been waking up at this time for the last few days desperate for the toilet, I mean commode, haven't quite got the luxury of using a normal toilet yet! However my mum has brought me some lovely toilet paper so one step closer aye! 

After doing my thing I found myself wide awake, so what to do at that time of the morning, watch a bit of "I am cait" Bruce Jenner transgender story. Internet took a while to load and I don't actually think I got to finish one episode and fell back to sleep around 7ish.

I then remember being woken up by mum and nurses at 10am and everyone worried about me. You literally can't sleep out of hours in this place without everyone freaking out! I had to have a few bags of magnesium and potassium as levels were so low, another reason they were all freaking out cause I was sleeping lol when I woke up I was like whatttt I woke up at 4am I'm making up for loss sleep! Lol 

My uncle came to say goodbye but I was out cold! I held his hand and gave him the thumbs up! 

Anyways once I finally rose from my pit! I enjoyed some lovely weetabix in hot milk and loadssss of sugar!! I have such a sweet tooth and since being in Harefield, I've hardly eaten anything like that or fizzy drinks! 

I then sat in a chair and chilled next to my bed, been trying to get out of bed more cause it makes me feel so much better! 

Anyways randomly all the Drs came around like a ward round and also Simone one of the consultants introduced me to a surgeon. He said to me oh you look better than I thought you would! There's me all chirpy chatting away through my bipap thinking nothing much other than this was just a ward round. He explained about when they do my transplant surgery about how they will have to do open heart surgery to remove the stent and also do reconstructive surgery on the svc vein because of the narrowing. I was taking it all in and like ok , bla bla and off they went. 

Mum said to me after cor your so calm, I thought they were coming to say we have lungs haha and that didn't even cross my mind! One thing I've learnt about this hospital is never assume anything! Plus you see everyone around all the time! 

Anyways I took in everything he said about the heart and vein etc. it's got me all a bit nervous, just because it's out of my comfort zone and it's hard enough on my little body having a double lung transplant, but I'm going to have to go through all that too! It's big stuff! 

Anyways just chilling again, 20 mins later, they all come back in. And the surgeon says ok so we have a potential donor! 

I was a bit taken back, esp as it was day time, your mentally prepared for night time calls! They said it would be hours before they would know more but they would get me ready like it was going ahead. I've done a trail run already so I knew what the crack was! 

My plan for today was to have a good wash anyways so the only difference was it was with the surgical wash instead! 

It was quite nice that I didn't have to rush, my body just doesn't do rushing! 

So got my little bowls. 

Shaved my legs and under arms that alone made me feel amazing! 

Then I just got naked and sat on a towel on my chair and washed like that! My poor mum has seen it all now! Bless her! 

It felt so good to wash, I do all my bits and mum done my back. The only thing I didn't do was my hair. I was exhausted after and to be honest I didn't care. 

Even managed to go on nasal cannula for about 5 mins so I could give face a good wash! And tie back hair! 

Once that was done, I had loads of bottles of bloods taken which is standard, everyone who's done this or goes to tx clinics pre tx knows how much blood they take for all sorts! 

He was funny the Dr who done it, my veins are rubbish so he comes in with a cannula- I hate cannulas at the best of times, but I let him try, it went in, then blew up so we went back to old school butterfly needle but my god it took ages, I couldn't feel my fingers by the end of it, literally must of been about 10-15 mins, the blood was dripping so slowing into the bottles! 

Anyways that was that done, then I was nil by mouth. Nurse did all her forms. Had blood pressure done, all was good. Then it was the waiting. Now this is the worse part. 

The transplant coordinator came to see me a few times to keep us updated, and like last time it was from a non beating heart donor! But that's all I knew! 

I was very calm, we all were, me mum and lee. I was soooooooo hungry! So I think I was so distracted by that I couldn't even think about what was or could actually happen! And then I started feeling sick I was so hungry, so I tried to sleep to take mind off food. Mum and lee were sitting there secretly eating sweets the buggers!! 

Anyways Long story short,around 7pm we found out it wasn't a go ahead! But like last time I'm so thankful that people are still donating, and families are making that brave choice to go with it! The donor and the families are the true heros in this whole process! And I can't even imagine what they are going through! 

I am gutted because I feel stronger mentally and physically today, but each day I'm getting strong so when my time comes I will smash this! 

Maybe 3rd time lucky! 

Had a yummy Chinese for dinner and a bottle of orange lucozade! First fizzy drink in Harefield! Lol 

I'm mentally stronger today, feel like me instead of a numb person! I hope that continues and I don't fall back into a zoned out emotional wreck, but it's all part of the process! 

Love to all 

Sprog xxx

Emotional week

One thing that most close to me know is how impatient I am! If I want something done, I want it done now and over with! 

I think this is partly why I've been so stressed and down. 

My mum walked into my room yesterday morning and I just didn't say anything to her, but burst into tears!

When I get upset and down its not normal for me! And I generally mean that! And I fear it shows weakness which is far from the truth! But relating to me it's how I feel! 

So yesterday again was very up and down! One minute I would be fine, then I would just zone out, but there was no emotion there!! 

Anyways I've come to a conclusion it's the oxynorm! I've always said I hate taking stuff like that! 

So stopped asking for that now!

Over all I am getting stronger! 

My Physio from frimley has saved me!  And was amazing sorted out some water to humidify the oxygen for my cannula for when I am able to get back onto that, she also got me a couple of nose masks for bipap so I could try eat, drink and cough! And I cannot tell you how much in less than 24 hours this has changed everything! 

As soon as I got it last night I wanted to try it, so me being me got mum to open the mask I was most likely to use and give it a go! 

I was amazed at how well I took to it as I have tried nose bipaps in the past. But I suppose when your so desperate to do the smallest things you make it work! 

I did spike a fever again before my dinner arrived and felt very weak but once paracetamol iv kicked in I was all good again! 

I managed to eat a lovely Chinese dinner. 

Do Physio properly without getting tired! And I could drink and take tablets without it being a massive panic or effort to have to lift off bipap mask! It was also a lot more comfortable around my face and ears! The only think was talking but I've learnt that even now!

Today started off well, even managed to use the commode myself! 

Mum arrived we put the water on oxygen so I could try my cannula again. At the moment I like to try these things with no1 around. People stress me out too much and sometimes us patients no best aye! 

Had a lovely fry up from the cafe. Done all my morning stuff. Dr came in and it was so funny 

Talking about how I am etc the normal Dr and patient chat, then mum starts flapping around the room cause a wasp got in! You could see the Dr was like wtf until the wasp went over to him then he started dancing around, it really was the highlight to my day! 

Saw Carby on Wednesday which was nice! He made my day, he told me I could get off the heart monitors, I was allowed out of my room and over to the old granny's cafe and he said if I managed that ok I could even be wheeled to local pub! He said the stent is unlikely to move as they were pulling so hard to get it out, so doubtful that me moving around will make it move! 

I've been very emotional this week and numb, not like anything I've ever experienced before. I don't even do down let alone feelings like this! 

But Ive accepted it and just acknologing that I am Human and been thru a lot! 

So I managed to wash my hair in my room with this blow up thing. 

Was so nice to have clean hair! 

That's all to report really. 

My white blood count is high my crp is hovering around 170 but better than 300+

Heart rate changes daily 128/142 

Sats same sometimes 94/98 on 5 litres of oxygen thru bipap. 

I've had to have a lot of magnesium and potassium drips as levels been really low. 

But that's it really much the same waiting for lungs! 

Although I did listen to Carby and did escape my room and go to the old granny's place and enjoy a nice ice cream, was nice to get out of the ward and get some fresh air! 

Here's hoping the next blog is about me getting lungs!! 

Love to all 

Sprog xx

Moment of weakness!

I'm pushing myself so hard to keep this blog updated, for lots of reasons but mainly because I've always said this is my diary and I want my feelings and emotions and my journey recorded, that has always been the main focus of this blog! 

Physically things are so crazily hard! I've never ever experienced a struggle like this before. I've always had bad days and a massive decline the past year, but nothing compares to this! 

After yesterday I have also realised that I'm not super human! I have great strength and positivity and I know those lungs and my new life are so close now. But yesterday I mentally couldn't cope! I was so stressed! I was so angry and scared and just cried so much and attempted to scream thru mask ha 

It doesn't help how hot it is! But it was the smallest things triggering my emotions off, like an alarm to tell me my pump had finished. Or getting on and off a commode but being tangled in wires and drips and monitors. It's all too much when your struggling to breathe as it is!

My nose is really sore and dried and cracked and bipap pushes down on my nose, so that stings.

I also have thrush in my mouth due to all the drugs I am on, that's what happens and I was so wanting them to hurry up and give me the fluconzaole tablets, because I no it takes days to kick in!! 

And I really wanted to start it and make sure I didn't get thrush going down into lady area because that is not what I need right now!! 

Because of the thrush in my mouth my tongue is very sore and I can only eat really bland food.

But eating has been a struggle alone at the moment. I haven't been able to get off my bipap so I literally have to have it attached to my head but not tied around cheeks and hold with hands and once I breathe for a few seconds lift the mask, put food into my mouth and bipap back on and eat and breathe thru mask again!

Now with cf we all know eating at the best of times is hard and it's a known fact in general not cf related that the slower you eat the more full up you get. So you can imagine my frustration! Also now more than ever in my life, I really am burning more calories by breathing! 

Also my bipap has been doing my head in making farting noises lol it's tight on face but all the settings are higher so more pressure. 

I know mentally I'm still trying to cope with waking up in ICU and hearing what's  happened and the fact I cannot leave, can't even go further than outside the ward, and even that the times I've done it have wiped me out! 

I don't get panic attacks ever and I'm certainly not one to obsess over stuff like that and hate to put a name on things and generally I can self calm myself, but this last few days I honestly just haven't dealt with well! 

The weather is beautiful but not when your stuck in here. I've been spiking temps, my infection markers been over 300 and white blood count raised, I've kinda shut off to numbers now, all I want to know is if it's ok or not! 

I'm so gutted I have no independence! Think that's what's getting to me the most! Adjusting to the change!

I'm not saying I was completely independent before all this I was still very much in a wheelchair using oxygen constantly. But not being able to walk to a toilet or get on a toilet myself, wash myself (I can't even wash aswell as its impossible) and obvs just have nasal cannulas to eat! I can't even drink without it being hassle! 

It's mentally draining for me! 

All this is why I think I mentally broke down yesterday! But maybe it's a good thing to get out of the way! 

So I thought I'd give you a rough idea of a daily routine. 

Wake up at 5-6am ivs make me need the loo. 

Commode comes in. I then stress because I am attached to constant heprin going they port to thin my blood because of the clot on the stent in my heart. So that's wire number one (ports under my heart side boob! 

Then I obvs have this lovely annoying heart monitor that is constantly attached to me. So have to position this. 

Then there's the groin lines. Now something's I have drips running so yet more wires to move about. 

Then I have to get the energy to sit up, turn to side of bed, stand turn around with all leads in different directions, then pull knickers down. 

Make sure bipap tubing in right direction! 

Then gentle sitting down and making sure all tubing doesn't end up inside the commode lol 

Then I can do my thing!! 

By that point my heart rate is normally taking over my entire body, breathing is so much worse. And I sit longer on the actually commode recovering and preparing to get off than I do anything else! 

Getting off pretty much is the same with added wiping! Ha oh and to add to make my little pain in the arse situation even harder, there weighing and measuring everything now so I can't just put tissues in the bowl! Fuckers! Haha 

Anyways so that's toilet. Brings me to about 7am. I have to rest for a good 30-60 mins to be able to do next thing! 

In the mean time nurse takes me bloods thru my line in my wrist. It's how they check blood gases and all that, the name has gone out of my head but it bloody hurts the position of it! 

It's so handy to have instead of being stabbed every few hours. Anyone who has to have or has had a blood has knows how painful they are! 

After they take the blood, they flush it and omg it's so weird but my thumb and finger go really hot and tingle for a few seconds and I have to itch it, its the weirdest thing! 

I'm constantly attached to a pump or something, don't really understand it all but they can read my heart rate I think she said thru the line!? It's so clever! But again annoying to be attached to constantly! 

So then there's breakfast and I explained the eating situation. Breakfast is prob my biggest meal of the day and I like to eat as much as I can. We all love a fry up and  it's good when ya mouth burns like mine does right! 

So that takes prob about an hour and have all my tablets. 

Then I do pulmyzine neb thru my bipap. 

Have a rest or normally sleep.

And nurse normally in and out setting up pumps or giving me ivs.

Physio comes around 11.30 so do ventolin nebs just before so all nice and loose. 

After Physio I'm wiped. I try take something called oxynorm. The lovely Macmillan nurses suggested I take it to help relax me and heart rate. I'm very anti drugs like this because I don't want to be  spaced out or not focused. But if it helped heart rate I was happy to agree and I can have it as and when or not at all! 

This normally sends me to sleep. Or I see the doctors or dietian or call out nurses I think there called. They the link between hdu and icu. So lovely. Everyone he is! 

Then there's lunch, if I can handle it. 

Then the afternoon full of more bloods and drugs and Physio and nebs. 

People must think you have all the time in the world in hospital. But you really dotn get a break! When I've had my really bad days, mums stopped people coming in and gone out to speak to them. For me sleep is a massive part of getting better at the moment! 

Anyways can't be bothered to carry on with list of day but you get the idea of that's just up afternoon how stressful it is! 

Now one thing I know I am not myself is, the use of my phone! Anyone who knows me knows I'm HOOKED to my phone! This past week I can barely look at it for more than 5-10 mins. Not because I'm not waiting to see messages or anything but it's hard to focus! And it tires me out so easily! I have to get mum or lee to read stuff to me and reply for me! 

Even though yesterday was a bad day, Friday was good! I had the lovely Sarah Hurley who works at the royal Brompton on foulis ward doing reflexology! I have always found a very good connection with Sarah, feel very free, open and relaxed around her. She helps me so much and I appreciated her coming so much! 

I had my lovely friends up the other night for a bit. Was so great to see them but exhausting. Although I had loads of visitors that day.

I had the best surprise visit from Veronica and Fred as she was in clinic! Obviously couldn't get close because she is post transplant but thru the window and she gave my mum bits and balloons and she made me and my family a lasagne!! 

I love her so much and seeing her gives me so much fight because I saw how unwell she was pre tx and she's incredible now, it was also good for family to see, keeps a focus! 

It was a good day, my story had reached the daily mirror and also I've reached and gone over my target on my just giving page! 

But don't want it to stop! Want it to be record breaking! 

Decided I need to stop visitors until I have the strength to do normal things like wash and eat and I need to just chill. As much as I know I should chill when people are around I want to talk to everyone and get hyped. 

I started feeling a bit sick last night which I've been dreading would happened but I think it's due to not eating much. So not focusing on it and keeping on top of meds and in anti sickness! 

Right so tired now but glad I got all that out! Each day I do feel a bit stronger and let's face it I was on a ventilator for days and I only have between 15-20% lung function  before that so body is wiped and I'm so lucky I got off it!

I feel like I have over come a lot of fears and all this is setting me up for great things! Rome wasn't built in a day they say and my body just needs time! I'm gonna smash this I know I am, I have no doubt it's just hard at times to deal with the situation right now! 

Love to all 

Xx

Reality!

So I wanted to come back in full spirit with my blog last night and keep it light hearted. 

But this blog I do want things to be very real too! 

Yesterday was one of my hardest days since waking up. I couldn't relax,or get comfortable. I'm constantly being told my heart rate is so high and having lots of ecgs. 

The team here are great and my nurse Natalie who actually is friends with my cousin (small world again) she's amazing! And been very lucky to have her these past few days! She's very relaxed and claiming and gets things done asap. 

Physio  Abi is very good at her job, but I'm finding it so stressful. She wanted me to come off bipap to do nebs of course I wanted to aswell but every time I changed to nasal cannulas, I felt like I couldn't breathe! She's trying so hard to make it easier for me so I can get my treatment done 

I started off so well yesterday and day before I had washed and felt a million dollars! But it was very clear after Tuesday morning Tuesday was a bad day! 

George started this blog but is struggling to finish it so has asked me to write how she's been feeling.

Last Night was hard because there are constantly staff in and out taking bloods and checking blood gases to make sure she is getting enough oxygen and is able to get rid of the carbon dioxide in her blood as with rubbish lungs this is a real problem. George has also started to experience panic attacks, understandable given her constant high heart rate and struggles to take a breath. Her bipap assistance has been increased to support her failing lungs and she is fighting hard to keep out of ICU.

 I have moved into accommodation at the hospital which means I can be with her straight away in the night when she is feeling most panicked and give her a little massage as it relieves her back pain, it's something we have all been doing as it really helps her relax.

Trying to eat and do Physio is becoming such hard work as both require George to come off her bipap even for a short time and being on oxygen alone is very scary for her, even to take tablets and clear secretions.

During all this we do have times in the day when we get the George we know and love back, even if only for a short time. The lovely Macmillan nurses have sorted out some of her medication and although completely refusing anything like morphine as it makes her foggy and not totally with it they have found a drug to relax her while keeping her aware.

She has had her room "pimped" by her lovely cousins so no one is in any doubt arriving at Harefield where she is and had lots of balloons delivered by her lovely friends along with cards and plaques for her wall. 

Her ICU nurse and my neighbour tapped on the window to say hi and George gave her the thumbs up and said I'll see u soon, after I get my lungs.

There is a volunteer who comes to ICU called Brian to talk to patients while they are sedated he just chats away telling them about mundane stuff but they say if they are able to hear it takes away from the scary alarms and medial talk to calm them. He spoke to George several times in ICU calling her "princess" and has continued to visit now she's in HDU,  he's quite a character ands she's become very fond of him so hopefully when she's next needing him to talk in ICU post transplant he's a voice she'll remember. 

Unfortunatly George's sisters Hannah and Libby have both had tummy bugs for the last week so been unable to come to see her, Hannah has been ok for last 24 hours so had a chance to come for a visit  so George want a pic of them both, just waiting for lobs to be well and she can come for a visit too as it's hard for them not to be able to see her.

What more can I say,  we need these lungs so desperately now.  looking at her tiny little body go through all this is hard, her chest is pumping up and down to try to deliver oxygen to her lungs and when I give her a hug her heart is just constantly pounding and we now have temperatures creeping up to beyond 38. I

If everyone's good will could bring her new lungs she would have them many times over but unfortunately the waiting game continues 

Something that really cheered her up was reaching her target on her just giving page, so if you are reading this and want to make a difference to her day please feel free to donate xxx

Guess who's back!?

I'm back bitches!! 

(Warning for people reading, I talk about girly bits, toilet problems and nakedness!) 

For weirdos please don't use this as porn ha 

Sorry haha So this blog I know for a fact will prob make no sense! Il do my best and I'm just gna go by what's happened in my little world! 

Right off I went 2pm to get this stent out had a selfie with mum and lee and a few giggles before hand, was told to have a good wipe down my groin area, they gave me wipes that had a picture of the vagina area so I assumed safe to use on that area obviously! 

Me being me gave myself a good old wipe... Then I sat there with a burning fanny (as I call it!)  Mum and lee found  this highly amusing pre op and I ended up having to wet and to cool down with blue paper, really cold and hold inbetween my legs! I was on fire! So for my fellow clean freaks do not trust pictures for fanny wipes! Ha! 

I also found the sexy giant granny paper panties funny...one size fits all! 

 So off we went 

My surgeon was the nicest guy and he explained all the bits, typically I wanted to ask for a video or picture after and he said he would most likely be able to do this for me! 

Things are a bit blury. 

As you are aware mum has filled in the blanks! She's a good little blogger and hope she kept you all informed! 

I remember choking, and seeing orange stuff but it felt like I was choking forever!

This is all very hard to remember now! 

She gave me paper and pen. And put the pen in my left hand, I was struggling so hard to write after gomey writing a few things, I wanted lee and mum and I said have I had a transplant? and she said no. And then I realised I could put the pen in my right hand haha

She changed the finger probe over and she said oh your right handed haha and I became the best writer ever!! 

A few mins later or so mum and lee came in and I was like what the fucks happened!?? They looked relieved to see me and I was like what's happened where am I? And then began to argue that I was at frimley and how did I get to Harefield bla bla 

Then remebered why I got ambulance to Harefield night before! 

I was moaning how much my nose hurt from the enormous ng tube and the giant oxygen tubing, I'm use to my baby ones! 

And I was naked and had a cathetier in to wee...what had happened I couldn't explain it and wasn't understanding it and they told me how serious it was and lee and mum said how loved I am and how amazing my just giving page was doing!

I couldn't take it all in and was getting very frustrated! Then I found out the day! It was Friday! Wtf I'd missed so many days. I literally couldn't understand. 

Everyone was down, family wise and  then obvs I wanted to see everyone, I was in ICU and nothing made sense! 

I saw some lovely Drs and one called Alex tried to explain to me what had happened and why I cannot leave Harefield now. 

This is so differcult to remember and feels like weeks ago now. Everyone was telling me, I had been ventilated and they were close to having to put a Trackie in my throat. 

Was all too much. Mum told me about people visiting, I felt so bad I had no idea. And got very tearful when I found out about my little sister had been very upset! I Started crying! 

Then I was back to moaning. Got the ng tube out 

Grumpy bossy George! 

I got all the questions and just wanted to talk a lot but was told very quickly how much I needed to take it easy. 

I told them you don't know me! I'm fine bla bla. Inbetween family coming in, I had surgeons and consultants walking past telling me you ok and lovely people smiling and asking how I am and I felt so rude. 

One man said you truely are a lucky girl to be here. He was so lovely but seriously, I felt like they had been talking about someone else, I'm just me, and if all they said was true course I'm still here! Giving up has never been an option! 

Then it hit me I was in a very scary environment. People around me weren't awake, guy opposite was and before I left I found out he had actually just had a double lung transplant! :) 

Then the problems...so I was very aware of a line in my groin, the fact that I hadn't actually had a poo for a week as I'd not gone at all in ICU so I'm told! 

So I had to bite the bullet and have some thing pushed up my bum to make me go! 

Didn't give me much time or warning but did feel slightly better after! Although being naked and using a commode or just a bowl to do ya bits in, made me feel so not what I'm use too! I wasn't even keen on giving urine samples. so over all that now! 

 

I slept rough that night cause it's a strange place and not a good one to be awake for! Family's broken hearted! And people didn't always come out the good side! I was too aware to be there! 

I had the best nurse and we had a little giggle cannot believe she is my parents neighbour! 

And then the next day she was looking after me again and they planned to move me to rowan ward where I am now. HDU but coming out of ICU was amazing, so bright! And there were trees ha and the room I'm in I love it's at entrance where u drive into hospital, and I love people watching so it was great. 

Plus camp jewsbury/Somerville/Petrie/delevingne and anglins were outside and it was amazing to see all my family there! Even though I couldn't see everyone as I became very tired, it felt like I was with them! 

I'm missing so much out. It's hard but I want to get important bits. 

Saturday night was hard, had to have X-ray on tummy and chest! But was nice little tour of hospital!

Sunday full of more family and visitors and being told who had visited when I was out of it! 

Sunday night I got my first call! So strange! I was so calm. After hearing what had gone on. I think I've just Been a bit numb and in shock! 

I was fast asleep, lee had only left about 11.30pm and my transplant co ordinator, woke me up very gently around 1am 

and said hey George do you remember me! 

We have some lungs! I was still waking up! She explained it all and it was going to be a full size to fit me! From non heart beating donor! 

I rung lee as he takes a while to wake up and was furthest and said get here asap! Then mum! 

I couldn't  believe how relaxed my mum was! And I was so exhausted I just wanted to take it easy! 

Before they both arrived, I had met the surgeon! I think he was German! We went thru all the legal bits and then signed away. 

He asked if there was anything I wanted to ask and I said can you take a picture of my lungs, he said he would try and remember and we had a little giggle. I said ok il tell everyone! And then I said you promise you won't give up on me! 

I won't ever give up so whatever happens and he said I know you cf lot, your little fighters! I said I know but you don't give up on me and I won't on you deal!

Signed my life away! 

Then lee and mum arrived. 

I'm so use to being naked now! My poor mum has wiped my own bum and lee and them have bed bathed me and seen me naked so many times now it's the norm! 

So they sat there while the two lovely African ladies washed and de haired me.... Yeah another thing no1 shaved me in ICU! Thanks! 

Then I got a full on Hollywood by one nurse hahaha!! Badly shaven pits but I was struggling so much to function I wanted to save my energy! 

I have worked it that I may buy some nipple Tassals as that seems to be the only non acceptable type of boob display! Haha

Anyways long story short it wasn't a go ahead! But very close! However I was so happy to have gone thru the process and knowing some poor family still took the strength to agree to organ donation! The lungs weren't suitable but other parts were donated and I know how amazing that would have changed the lives of people this week! 

Donors are the true heros and inspirational people!! 

My coordinator was gutted for me, and was surprised how well I took it. But I know my time will come and it just made me happy to know in the darkness hours of pain people are still doing the best most selfless act!! 

Onto more real life situations. Feels like forever since Friday! But I'm really not good. I'm so mentally strong but my body is under a lot of strain! Tonight Drs explained to me after a really bad day that we have options still if things aren't going well. 

But they are worried the clot around the stent in my heart will fall into my lung! 

I just need lungs so bad but I'm forever hopefully and bloody hell I've come this far, it's going to happen! 

I've got some amazing people around me! 

But I'm struggling to manage convos, using the toilet. Eating! I just can't breathe! Moved onto high flow oxygen as they said that my sats were ok to come off bipap. So braved it and felt ok. Yeah bad move blood gases didn't agree and heart went mental. So back on bipap! 

I had port accessed today and I'm on constant heprin infusion, which is much better than the blood thinner injections! 

Thank you so much for all the amazing support you have all shown! And please do not think I am ignoring people's messages. I change hourly here and cannot get much of a rest at the moment! 

Life is hard but, the things you want the most are never easy! I'm ready for bed now with my new frozen bed sheets! 

Thank you for almost reaching my target, I am sure the cf trust will be over the moon and I am very proud that my story has encouraged people to help! 

But please if you agree to organ donation. Please please sign up, talk to your family.

Let's break that awkward taboo of talking about death! And tell people your wishes! Let's educate others and let's make it something comfortable and good to talk about and not scary! 

There are lots of reasons for needing lungs and transplants, you never know if you would be in the situations yourself. 

So let's get it out their! And please wish me luck for another call soon! Until then, I hope my next blog is my mum telling you guys I have lungs or even better me telling you all!! 

I also want to say how great the staff are here! But I am truely misusing my frimley family! From the cleaners right up to the consultants! 

I cannot wait to call them up and Speke to them, and at least room 5 won't be hogged by me now! It's a great hospital and needs a million pounds to raise charity wise to help make the unit slightly bigger as there are only 5 patient rooms! I know once I get my life back I will be doing all I c an to help that ward! I wasn't there for long but they all took me in under there wing and I felt like I've been there for a life time! I miss everyone so much! 

Time for sleep now xxx

Here's down pics 

Sexy hair style! 

Me and dad 

Out of ICU!

On Saturday George continued much the same way, there wasn't any more real improvement and more importantly  no decline. She has been left much weaker and is increasingly reliant upon her bipap for longer periods of time which means eating has become a problem as although George is hungry breathing using her nasal cannula is sending her heart into overdrive and it's going up to 150+ bpm sending all sorts of alarms going off and causing her to have pain in the centre of her chest caused more by her heart then lungs.

Although she is awake and now desperate to see everyone talking is really wiping her out but keeping her quiet is not easy at the best of times; her room is on the ground floor and just outside there is a garden area so we got a few of the family together lined up by her window to say hello

On Sunday night George was alone and asleep and had a tap on the shoulder from one of the transplant co-ordinators to say they may have some lungs and more astonishingly they were the right size! she got straight on the phone to lee and myself to tell us the good news and get us to the hospital. 

It's funny it's seems like we have been waiting for ever for that magic "call" and I imagined we would all be completely panicked and flapping but maybe the events of the last week have got us all used to living with such a level of stress that we were completely calm especially George who was continually making sure we were ok. While she was waiting for us to arrive one of the transplant surgeons came to see her her to explain all the normal stuff that could happen and get her to sign consent forms,  in true George style she asked him to take pictures of her old lungs and also asked him to do his best for her so he made deal, if she did her best for him he would do his best for her! 

She had been told that the lungs would be from a non beating heart donor which meant that we would have to wait to see how things happened after their life support was withdrawn and their heart stops beating. It's at this point that it hits home that somewhere there is a distraught family and through all their grief they were making the most unselfish decision that would give many others a chance to stay alive, they are without doubt the true unsung heros of every transplant story. 

 

A few hours later we were told the team were now looking at the lungs to check their condition and if all was ok we would be off to theatre within the hour. A while later the co-ordinator was back to say unfortunately it was not going to happen,  when they had a chance to look at the lungs they showed signs of too much damage. I felt so deflated and literally couldn't speak. George on the other hand was completely calm and seemed  to take it in her stride as she has withso many  things this week, she wants the best chance after transplant so is glad they are being so careful to find the right lungs. She then asked if other organs were still ok and was delighted that others were lives were still going to be changed. 

So her wait continues 

Monday mornings are mad in hospital wards and as we were transferred over the weekend it seemed like we had an endless stream of people coming in and out so for George sleeping was just not possible. Her transplant consultant,  Simone, came and said that due to the blood clots in her heart they have spoken to the national medical director in charge of transplants to make her a national priority for lungs, it's weird to think there is a omnipotent figure out there literally making life changing decisions.

After sleeping George was determined to have a proper wash so we loaded up a trolley with all her machinery and went off to the wet room where we had a giggle as the only way I could help her shower was to strip down and get in with her,  i just hoped that we didn't have an emergency where people had to come rushing to help with me in my underwear! Being clean made her feel so much better, it's funny it's the little things that really make a difference.

George has asked me continue updating while she's not great as she gets quite tired, I hope it's not too boring but there is a lot to update and it also means we are not having to send lots of messages about how George is getting along as it's all here. Here are a few pics we have taken over the last few days xxx