Thursday & Friday 3rd & 4th day on ICU

Today George was moved from one ICU ward to another,  more equipped to care for patients who will be here for longer periods. She has been more heavily sedated to make her more comfortable and has her own nurse watching her constantly.

Dr Rosenberg one of the ICU Drs asked for a chat and filled us in on George's next options. They are very concerned about the secretions in her lungs as they are building up while she is sedated and on ventilation. The worst thing you can do if you have CF at any stage is lay static for days on end and at George's stage of lung damage this could be really serious which is why they were trying to wake her or give her a tracheotomy. Unfortunately as the day wore on George's secretions despite suction we're causing her body to go into some sort of spasam and these we're happening at increasing intervals so the Dr started explaining that the next stage could be echmo where an external machine would take over from her heart and lungs. Lee and I went back to see George several times and each time we did she had another episode and we were taken away so the team could work on her. They let us stay later on ICU as she was in a bad way and we eventually left at 10pm after being given cards with direct lines to ICU so we could call at any time. 

For the first time I found I couldn't hold it together and was quite honestly a quivering wreck, I don't know what I would have done without Lee,  he took control and asked all the right questions. They were increasing George's sedation further to try and stop the spasms she was having as she still has a stent wedged in her heart. So we went home hoping that the best outcome was that she would be stable enough to have the tracheotomy the next day. But all of us without actually voicing it were so worried that she might not be able to hang in there much longer

Lee got to the ward first next day and phoned me to say we couldn't go to see her for a while as she was having physio,  that was all they said so we just assumed they were working on her muscles to keep them moving.

 Next call came that she was awake and ready to see us! We couldn't get to the ward quick enough and we walked through the doors to see her beaming at us. 

She went from smiling to crying to smiling again and  wanted to know in her words 'what the f*#%k happened to me' so we filled her in, she couldn't believe it was Friday and asked how she got to harefield as she tried to convince us she went off to have surgery at Frimley hospital and we were idiots to think she had it at harefield. She told my sister off for coming home from Turkey and wanted to see everyone, even told the staff she wanted to see my nieces baby Seb she didn't care what the ICU rules were. It is lovely to have our George back! At this point through all the emotion we realised she was talking,  which we were warned she couldn't do immediately with a tracheotomy and then found out she had actually been stable enough to have her velitator removed,  it was the best outcome we could have hoped for. Probably makes us sound very stupid not to notice there was no tube in her throat but it was a highly emotional time. 

Her lovely nurse took me to one side and said to be cautious about her being off the ventilator as they were closely monitoring everything and it was still likely that she may need to go back with a trackie as they call it. It's at this point I just wanted to say this is George, now she's back in control that simply won't happen. As the day progressed she just got stronger and stronger and lovely Dr Rosental came and explained to George everything that had happened and that they were delighted with her progress, her first question was can I get out of here and go home. He said that that won't happen and George will most likely now remain at Harefield until she has her transplant so they can closely monitor the effect the lodged stent is having in her heart and liver, but as she has for the moment stabilised she will be moved to a high dependency unit and out of ICU,  he said that it his bought us more time to find the right lungs for George that will give her the best chance. He then said he looked forward to seeing her back on the ward post transplant!

To end a really unbelievable day while chatting with her lovely  ICU nurse Polly 

We discovered she's my next door neighbour - it's a small world!  xxx

Wednesday 2nd day on ICU

Overnight they tried a couple of times to again extubate George but her blood gases went mad and her body simply wouldn't allow it so her situation remained the same. 

The lovely staff at Harefield saved George's room on oak ward for us to use while she was in ICU, George has a very close family who all love her dearly so the ones living further away came down as soon as they knew the situation and my sister literally stepped off a plane to Turkey and turned around and came back home. Overnight the staff told us to use the room and they were happy to make tea and toast if anyone needed it. 

Waiting for news is the hardest part, knowing that the surgeons and transplant team are having meetings you just want some information straight away so when Dr Carby came for a chat it was a relief to get an update. 

He is a lovely Dr and very direct, George has always respected that he gives it to  you straight so you know exactly what you are facing. He went over the events of the previous day and said that as she was now reliant on a ventilator that the only option open to her now is a transplant. Although she is stable at the moment the problems the stent is causing with blood flow and pressure in her heart is being closely monitored along with her liver, also being on a ventilator can stir up her lungs and lead to increased infection and if that happens and she gets a temperature then transplant won't be an option. He explained that due to George's size it has always been unlikely that she would find suitable lungs to fit her tiny frame so transplanting lobes is the most likely outcome and also as she is in such a critical situation now they will be concidering organs that might previously have been rejected, we are quite simply running out of time. We asked if the stent would be delt with during transplant and he said at that point it would no longer be a problem the surgeon would simply put his finger in and pull it out as all the "plumbing" will be exposed and it's easily sorted.

Visitors are restricted to close family which to George means quite a large group so we keep rotating during visiting times. We have been told to keep talking to her as she can hear what we are saying which at first was a bit strange especially with total strangers in the room  but you get over that fast. During a visit from lee he was chatting away and she started to respond and wave her hands around so the ICU team adjusted her sedation and asked if she wanted to try to communicate with us, she gave us the thumbs up and we then had an hour where she tried her best to let us know how she's was feeling. She wasn't in any pain and knew where she was and we gently explained that she was on a ventilator which she kept pulling at to show she didn't like it. As George has been on the transplant list for a while she has given Lee and myself very clear instructions on what she does and doesn't  want ( no surprise to those who know her!) and one was that while she is sedated we play her reggae music so we asked staff and they said fine and put her phone playing on her pillow, for the next 5 minutes she was clearly not happy and we all, including the staff set about trying to find the problem it turns out the music was driving her mad so was quickly turned off which left us all smiling. A few times she smiled through tubes and gave us thumbs up and down to some questions she even flexed her arm to show her muscles and then gave us the thumbs up to say that she's is still strong which made us laugh and cry, George is still there under all the fog of drugs and continues fighting hard. A few times she tried spelling out words on my hand which I just couldn't understand and I know once she's through all this she will be telling me off for that. She wrote a word on a board held up to her 'uncle preps' and tried very hard to write something for her sister Libby when she knew she was upset but she was just too exhausted by this time to manage it so her sedation was increased to allow her to rest.

The ICU team have said this is a very good sign that she is fighting through all the drugs and they also did fresh blood gases while we were there that were also normal so tomorrow before they resort to a tracheotomy which will be irreversible they are going to have one last try to extubate her and see if she can hold her own. 

The ICU staff although very busy have been so lovely explaining everything to us and have said they know how loved she's is by all the visitors she has, she  even had 3 visits from the staff on oak ward to see how she's is and her lovely nurse Emmy from Frimley has phoned me to send her love and ask how she is. All the messages we are receiving  from friends and well wishers makes such a difference we know how special George is to us and how much we love her, seeing how much she is loved by others brings so much comfort during tough times. It will be lovely for her when she gets through this and has a chance to read everyone's kind words.xxxx

My Little Hero - by George's mum

George asked me when she first went on the transplant list to update her blog while she was unable to do so as this is very much her own diary of her transplant journey. So I hope my posts do her proud and fill the gaps while she's busy fighting hard through this. 

Tuesday morning at Harefield George had a visit from one of the lovely cardiac surgeons who explained that he was going to attempt to retrieve the stent that had found its way into her heart, typically first questions George asked were can I have a general anaesthetic and can you take pictures for me followed closely by if you get it out can I keep it! The surgeon was very much on George's wavelength and said absolutely and as they would be filming it she could have the cd too, as you can imagine George was delighted with this news and the cardiac surgeon was her new best friend.

The rest of the morning was spent getting ready for surgery and having fun laughing at the paper knickers she was given, they only come in one size which is enormous! 

Lee and I were allowed to take her right down to the theatre she was going to and the surgeon met us there and explained that while it was important to remove the stent that if at any time her body showed any sign that it wasn't coping they would stop and try again, her welfare was the most important thing to them. So a very relaxed and happy George took some selfies of us all and was then taken off for the procedure to start this was 2.15.

At 5pm her surgeon came to see us in her room and we knew straight away he was about to give us bad news. The stent had found its way into a valve between her heart chambers and was stuck fast and despite  his best efforts he could not remove it, George's left ventricle had also started to show signs that it was not happy so as he said earlier George's welfare was the most important factor here so they aborted the procedure. He did however have a good look at the situation and it wasn't good, the stent was covered in clots and the valve it was holding open was allowing blood to travel the wrong way back into her right atrium and to her liver. He said she was still aneathiatised to let her body recover and she would be back on the ward later. He explained there were now 3 options open for her as this was now a critical situation, they could try again to pull it through a vein with cardiac surgeons ready to take over open heart surgery if things went wrong, go straight for open heart surgery or leave alone and put her on an urgent call out for lungs. As you can imagine we were gutted, all the options were highly dangerous for George .

Lee,  my sister Pamela and myself waited for news she was awake and we could see her. After several hours a nurse came to explain that they had been unable to extubate George from a ventilator as her lungs were just not strong enough to cope by themselves anymore. This was always a risk George was aware of when having an anaesthetic but as she had sailed through being aneathiatised twice in the last few weeks she was not concerned this time. We were then  taken to ICU to see George, she was in her own room with 3 dedicated nurses looking after her, seeing someone you love in this situation for the first time is heartbreaking and I will never forget the feeling of total helplessness.

Visiting times in ICU are quite restricted as George is quite rightly their priority but like many CF mums George and I have been through everything she's had to cope with together holding hands through the toughest procedures and reassuring her everything will be ok so emotionally this is hard, no matter how old she is my little girl and I just want to hold her hand and tell her everything will be ok. it breaks my heart to leave her I just feel so helpless. Lee has quite simply been amazing he has been such a great support to George and can always make her smile. Spending this much time with your mother in law would send most husbands mad but lee has been there for George and me and kept me strong and I will be forever grateful for him for that xx

Frimley to Harefield!

Just doing a little blog to keep myself up to date with stuff! 

So the weekend was very chilled and I stayed in bed and didn't move as much as possible, which to be honest, wasn't the hardest thing in the world! Lol

After acting all brave on Friday, I have to admit, it did hit me Friday night when I was on my own! 

And OMG I experienced my first blood thinners injection and I have never felt pain like it! 

I'm on this one

Literally I don't have enough fat and when the stuff pushes in, the sting I get was so bad! And leaving my tummy with bad boy bruises! 

Decided to use Emla cream now an hour before to take the edge off! 

I'm not as brave as I come across sometimes, but I wouldn't be human if I didn't feel a bit scared! I was focusing on every pain or movement in my body and massively focusing on my heart rate, Which obviously the more you focus on it the higher it goes! 

I worked myself up into a state and when I switched from my nasal cannula oxygen onto my bipap machine, I went all panicky and heart was pumping like mad, I felt like chest was closing up on me, rang buzzer and nurce came running in and I was almost in tears I was so scared, im so embarrassed now, but someone had turned my oxygen off that connects to bipap so I wasn't getting any oxygen through it, just air and that's why I was struggling!!

I worked myself up over nothing, I just wasn't in a good frame of mind! And I relaxed so much after that and I asked nurse to keep my door open, not meant to normally because of cross infection but I was the only cf on the ward and I was so nervous!

Saturday was chilled and I was much more myself! Was quite sleepy and spaced out as I had taken tramadol regularly!

Mum spent the day with me and she looked exhausted so I gave her a pillow and we both curled up and fell asleep. 

Then Sunday I felt awful and was in and out of sleep all day! Luckily mum and Libby were in chilled mode, well Libby slept at the end of my bed bless her! 

I had bank nurses on Sunday too so that put me on edge as they didn't know me personally, so wouldn't no if I wasn't myself or not! 

In the afternoon I had a lovely surprise visit from two very close friends of mine Tor and Gemma! 

So mum and Libby went home and it really perked me up then coming to see me! 

Then lee turned up a bit later then after Tor and Gem left, my other two favourites turned up Hannah and Siobhan and had a lovely catch up with them and lots of cuddles with lee and it was such a good distraction for the following day! 

By the time everyone left I was exhausted even though I had slept most of the day, I put my bipap on and I was out of it asleep! 

So Monday arrived and I was hopeful of a plan but nervous at the same time! 

Mum got to me for about 8.45 and I woke up about 9.30 I think it was! We didn't know if we were going to harefield in the morning or afternoon or if it was that day! 

The day felt like the longest day! 

Phone calls back and fourth with harefield to see if there was beds and what ward would I be going on etc etc

So got to about 2pm and Chris came to see me and told me he had spoken to the team at harefield and they were trying to get me over in the evening but more likely be tuesday morning! 

He also said there wasn't a definite plan, but could give me a rough idea. 

He said they are going to try going through my neck to pull the stent out of my heart, if they can't get it up to where it needs to go they might just put it in another artery so it's not sitting in my heart! 

Most likely I would be awake and done in a lab, they call it, but it means like a room with X-ray and screen so they can see where they are going etc don't quote me on that, just my impression! 

If that doesn't work, then I'd prob be put under and they will have another plan! Chris gave the impression that until I was there, a lot of this suggestions weren't actually solid plans, but until they do there own imagery bits that's when they could make a final decision etc. 

And it was also mentioned that if they can't re-stent the SVC they will keep doing the balloon thing through my neck to keep the vein open and just do that until I get my lungs and do some sort of reconstructive surgery on the SVC when I'm having my transplant!! 

These weren't cast in stone plans just have been mentioned in convos etc. 

And I asked him after him giving me all that lovely news of i could see the pics of the stent and blocked vein etc and where my new port is! 

Here is some pics, couldn't get one of the stent in my heart cause it was on ct and it wasn't obvious. But here's one of my mri scan back in March when we first found the narrowing. 

And then the X-ray is the one taken when I was in recovery but the stent doesn't show up in X-rays but you can see my port on the side of my boob and the picc line by armpit! 

So we were told there was a bed for me tonight in Harefield and transport were getting me at 6! Because of traffic didn't get to us last and set off around 7ish I think it was! 

They had to do an ecg on me before we set off and mum followed the ambulance to Harefield! 

I was strapped in on the trolley and it was so bumpy! Lol a few selfies! 

I have great fashion sense, pjs and converse! 

Haha

So got to Harefield and was put on oak ward which is the cardiac ward next to transplant clinic. 

I forgot how old this hospital looks, so use to frimley now it was weird! Luckily they put me in a side room and I have my own bathroom! 

Done ecg again, and I'm attached to heart monitor all night! 

Saw the lovely Dr and he wrote up all my drugs and ivs. And told me not to eat past mid night incase they need to put me under but he said they are going to try remove it through the neck. 

I was meant to have echo come to my room but now having it done first thing in the morning before clinics start. And then I'm sure I will be seeing everyone and hopefully have a clear plan of action!! 

Very unsettled tonight and so out of my comfort zone but I'm trying to focus on keeping calm and just getting through all this as quick and he best way possible! The quicker I get this sorted he quicker I can get better and get home and enjoy some summer out of hospital! 

Orrrr now I'm here even better plan would have some lovely lungs match for me tonight and then that will solve all the problems and I would be one step closer to getting some sort of normal life back, or normal as can be!!

Feels like this is never ending at the moment, but like they say what doesn't kill you makes you stronger and despite worrying a bit, I am in mega positive, let's crack on with this type of mode!! And I will not be beaten!! 

Also my crp was 112 so that's not bad considering I had operation Monday and normally they fly up after that! Whoop whoop right better get some sleep before il be awake again! 

Xxxx

Bad outcome!!

Friday I slept in as I had a bit of rubbish night sleep Thursday. Whilst I was asleep I remember my other consultant Alex coming into my room and kneeling next to my bed in the dark and waking me up gentle and asking me a few questions. 

She asked was I still feeling swollen and pressure, I said yeah but it wasn't as bad as the day before. And she asked was it as bad as when it was before I had my last port removed, and I said yes! 

She said ok, going to book a CT scan for you later. 

And she left me to go back to sleep! 

Then my nurse came in and woke me up just before midday and said I needed to have a cannula put in for the CT scan! 

I was like whatttttt I've got a picc line in, can't they use that, but they wanted a cannula- bastards!! Hahaha 

I had decided I was in woosy mode that day and wanted numbing cream on before I had the cannula put in. 

So we numbed me up and came back about hour later. 

I'm the only cf on the ward but there was two end of life patients and one had sadly died not long after I had put my cream on, and the other nurse has gone to do 2 hour training and no healthcare assistant that day so they were mega busy. Worked in my favour as I could keep the cream on longer!!

So when she came to do the cannula I didn't feel a thing! Was perfect! 

I went down shortly after it was put in, the little Nepalese porter guy with red hair came to get me! 

Got there filled out my forms, and waited to go in. 

I wasn't waiting long. 

I got in and had to lay flat which is never easy for us with rubbish lungs, but they gave me a pillow so wasn't completely flat. 

I had to put both arms above my head but could only manage one as port side was a bit stiff still. 

They attached the dye tubing to my cannula and she left the room. 

The bed moved right under the polo bit as I call it and it started swirling around the inside bit of machine not me swirling around haha 

Then the machine robot voice asks me to take a deep breath and hold it and as you hold it the table moves you through I'm guessing to scan all ya bits! 

Then it went back in again, then they injected the dye into my veins and same again asked me to take a deep breath and hold it! 

The second time was mega hard, not only does the dye go through your veins and tingle, it makes everything go warm and because I've had it before I know what to expect but feels like you have wet yourself! But this time with that to deal with when the dye went through and having to hold my breath it made my breathing go really tight and the pressure in my neck and head was horrible! 

I couldn't wait for the woman to get back in the room, undo the cannula and tubing bit, so I could get into the wheelchair, laying down makes the pressure worse!!

She pushed me out of the room and I had to whack the oxygen up, I couldn't stop coughing and I could feel all my veins budging out of my neck, the hulk had returned! And I got the worse headache!! I don't know if it was the dye or the pressure, or a bit of both but made me feel so sick and wanted the porter to hurry up and get me back to the ward!!

He arrived and walked pretty quick for an old guy! 

Got to my room and felt so faint and so sick! Nurse got my anti sickness but I was already being sick by the time she got back to my room!  

Then I relaxed a bit, Hannah and mum arrived and mum said I wasn't looking good and I explained. Then about 4.30 Chris my consultant came in, and I knew from his face and body language something was wrong!.......

I did not expect him to come out with this though! In a nut shell, my stent had fallen into my heart!! 

Come again!! Lol stent had just fallen into my heart, how does that even happen lol !!??

I stayed so calm and to be honest as weird as it sounds I was relieved! I honestly thought oh god I've tuned into that patient that wants to stay in hospital all the time and find something wrong with them!

That's not me in the slightest but after having the stent and port fitted it was meant to be all good and I would be home Friday and recovering well and hopefully manage to stay out of hospital for a bit! So when I started not feeling so great on Wednesday it didn't add up! And I thought maybe I was over reacting and making symptoms up on my head ya know! 

Well I'm glad I'm not that patient and I'm not going crazy and here generally is something very wrong that's happened!

Chris said basically he has spoken to Dr Carby and sent over all the imagery bits and there going to discuss a plan, and get me over to Harefield next week as soon as possible! Frimley haven't got the equipment here to deal with this and Harefield specialise in Hearst etc and with me being on the list for lungs anything like this needs to be done properly! 

Chris said Dr Taylor going to come down and have a chat, he's the guy who fitted the stent! Of course I asked for pictures! I want to see what it looks like! Ha 

I rung lee as soon as he left but couldn't talk long as I knew the Dr was coming to see me. 

Mum and Hannah were in shock and couldn't understand how I was so calm! Ha 

20 mins later Dr Taylor came in with my nurse and said do you want me to draw it and I was so pleased because I'm not great at understanding all these bits so it helped to explain what had happened! And luckily lee walked in before he started drawing and explaining it all! Chris also came back into the room. 

He said what he thinks has happened is the stents done such a great job at opening up the vein that it opened it so much that's why it's slipped. 

I asked why it wasn't stitched but they don't stitch them because there meant to cling onto the vein. 

It's all very complicated but now I have a stent sitting in my heart in the right atrium. 

I'm not allowed to leave the hospital or get out of bed much! I have to take blood thinner injections because the mesh is inside my heart if it was to clot inside I could have a heart attack and we defo don't need that happening!! 

But my god I had my first injection last night and I cried it hurt so much!!  How the hell do people do that, and I've got hardly any fat which made it worse!! I'm can't even refuse it because the risk is too high!! 

So I'm officially dreading that later!! ESP now I know how horrible it is!! Fml! 

So yeah I'm pretty upbeat considering and here's hoping whilst I'm at Harefield next week they find me some beautiful lungs!! 

I feel like this year as run away with me, and was so looking forward to this all being over with so I could get a break for a while! 

Now I think things are just going to get worse before they get better and I'm terrified going to sleep every night and coughing or just going to the toilet! 

My heart rate sits at 110 just resting normally and so scared I'm going to make it worse!! 

I never worry about stuff but this has scared the hell out of me if I'm honest! 

I can't be super human all the time!! 

On a brighter note my just giving page has gone over the second target of £2000 and I'm so so pleased! It's a good distraction! 

My favourite number is 8 so I think my next target is going to be a big one! 

But thank you so much to everyone who has donated, means the world to me and I'm sure even more so to the CF Trust!!

So massive thank you!! 

Operation done!

So I'm told every thing went well I'm not sure how long I was under for but I think it was a couple of hours. 

I didn't go down until 2pm and I was so ready to get it over with by that point, all morning I was craving a redbull, I wasn't even scared or nervous by that point, I was so focused on being hungry and thirsty! 

I had lee, mum, Cathy, Sally and Seb all morning to keep me distracted and it really did help. Before Cathy and Seb arrived we all had a game of cards playing joker which was a good laugh and competitive! Haha and that other game where you have 7 cards and you have to get 4 of something and 3 of something. I dunno but again good distraction! Also lee brought me the best balloon ever!! I think I have a balloon obsession!! So feel free to give me balloons whenever! Haha

When I came around I was in recovery and I remember staring at the clock, it was 6pm and I was then hit with the hunger!

She gave me some water and In my head I was just like god I'm sick of water (at least I hope I said that in my head) and she asked if I wanted juice! 

Now she was talking! Haha 

I haven't drunk a drink so quick in my life but the apple juice felt amazing in my mouth ha then she got me some custard cream biscuits and I ate them so quickly! 

They called the ward but mum and lee had popped out to where Cathy and Sally were staying as the ward didn't want little Seb, baby  around I don't think.

The nurse looking after me in recovery asked if I wanted to call them to let them know they could come to see me, I'm terrible wife I dont know my hubby's number off by heart so rung mum. 

Before they came I had an X-ray so I'm guessing that was to check all was ok in the right place, kinda hoped they had done one before waking me up incase it wasn't haha

Lee and mum arrived with my phone! :) and then I started ordering the Chinese again! Haha 

Got back to the ward around 7.45-8 and Chinese came not long after! I was dosed up on anti sickness, iv morphine, tramadol the lot but I was feeling wide awake, they had given me a steroid injection when I was under to help boost me because I had been under GA. 

I remember saying to my family that I felt like I and a long neck and felt lighter, like pressure had gone, could I have already felt the benefit from the stent?? Who knows but it's felt so good! 

Lee stayed a bit longer after mum and Sally left after 9. And then the tiredness hit me and that was it could barely keep my eyes open. So lee left as I went off to sleep on my bipap. 

I was sick a bit during the night but that was prob due to the drugs but slept quite well, I was very aware not to move much and woke up in pretty much the same position I feel asleep in! 

The next day I woke up buzzing. Totally not what I was expecting at all! Eating well, I still had that pressure free/light feeling in my head it was lovely! I was in a lot of pain still but I was very hyped, maybe the effects of the steroid iv still. 

My sats were amazing 98 on 3 litres which was great to be able to go down to 3 litres after being on 5 for a while now! My heart rate was 82! Incredible! I was thinking wow I can't believe how much this vein has been causing me problems and putting strain on my heart and lungs! 

Spent the day with family and got to see the lovely apartment that my family where staying at opposite the hospital! Was lovely and the weather was nice so sat outside in the sunshine! 

So all in all Tuesday was good, when I saw the Dr we said as long as I carry on like this maybe I could go home Friday and get my picc line out aswell! That really excited me, get my arm back! 

Oh and good news I don't have to take blood thinners with the stent so added bonus!

Now to yesterday. Woke up not feeling good at all!! Was gutted and felt like crap! Mum came to see me at 10am and first thing she said was wow you don't look good and my face was swollen!! 

Before mum came, I couldn't move when I woke up, I was in so much pain I couldn't even sit up to take my bipap mask off and swap over to my nasal cannula for oxygen! 

I luckily had the buzzer  right next to me and called my nurse! 

The lovely student nurse came in and quickly realised I wasn't good, she helped me take off bipap and swap over and then I was able to tell her I needed pain relief, iv morphine was the quickest! So off she went to get my nurse! 

So by the time mum had arrived I was exhausted and ready for a sleep again! 

I spent an hour with Sally, Cathy and Seb before they all went home etc! 

Mum stayed for the afternoon before lee took over later. The day was a bit of a blur really, I was very painful but once pain meds kicked in I did manage to have a bath, I wanted to get the tagederm off my port and let the air get too it but couldn't get it wet so washed with it on and then took it off after! 

Was dying to have a proper nose at the port placement but I have to say I'm over the moon with where it is. Really hidden! Mr Chong kept his word, although whoever stitched me up needs a little lesson on stitching, pulled really tight and looks a bit funny like! 

I have dissolvable stitches in side but they have to be cut on the outside after 10 days, he's tied a little bow! Ha I think my port one is stitches inside and glued outside! 

After lee left me yesterday I went to sleep and woke up hour later really swollen, pressure in my head and veins all coming out! I was like wtf this shouldn't be happening, called my nurse and she said maybe it's cause I was coughing, but everyone had gone home and all my numbers on obs were good so likely on call Dr wouldn't say much anyways. 

I kept an eye on how I felt in the evening but it did calm down. 

This morning I woke up massive. Without coughing I felt so much pressure. I called healthcare assistant and showed him and he agreed, it was like the hulk!! I became really worried because the stent was to stop all this and now I have the port in again! I told my nurse. 

When I did my little walk around the ward with Physio I saw Chris and asked him to comr see me, I also felt really faint after my walk and my Physio went and told him after she left me and then Chris came straight in. 

Explained exactly what happened and how I felt. I didn't want to be that person to over react, it's so not like me, but I don't want to leave it and something go wrong when I'm home etc and it really worried me and it was painful when you get all that pressure building up in my head! 

Also my sats are back to 90-92 but still on 3 litres so that's good instead of it being that on 5 litres and heart rate back to 100-117. 

Chris said he was going to speak to Dr Taylor who had fitted the stent and suggest what to do and to see what imagery we need to do to see the blood flow to make sure everything's positioned ok and working well etc etc. 

he didn't come back today and the plan originally was to go home tomorrow. 

Hopefully I'll have a good night and things don't flare up again but I'm not running out of here unless things are sorted, when I leave this time I want more than a few hours or a week out of here! Need to spend some time at home with hubby and family, and enjoy some summer before all the winter bugs start arriving!! 

Will update if anything crazy happens ha but no news is good news! 

Love to all x

 

Night before my stent and port fitting!

So tomorrow is my stent and portacath procedure! 

1. "A stent is a small mesh tube that's used to treat narrow or weak arteries. Arteries are blood vessels that carry blood away from your heart to other parts of your body. A stent is placed in an artery as part of a procedure called percutaneous coronary intervention (PCI), also known as coronary angioplasty."

1. "A portacath is a small stainless steel chamber filled with a rubbery membrane that closes over itself, which is placed under the skin on the chest."
   

   
   
   

   Little explaination and pictures for anyone who doesn't know what they are! 

I'm getting really nervous now! I wasn't bothered before about being put under, and was over the moon and the fear was completely wiped away, but now it's getting closer I'm thinking about the risk side of things! 

I mean there is always risks to things and out of everyone I'm the least likely person to focus on that, but it has started niggling away at me over the weekend, im only human! 

Then there's the shallow side of me, when I wake up and find out where it has been placed! 

And then there's the pain side of things... Another painful few days, and adjusting to sticking an injection into my stomach  for blood thinners, Ive seen someone do it before and I use to cringe at it then and wondered how they had the courage to actually do it!! 

I never thought in a million years I would be able to do that myself, or would be put in a situation where I needed too! 

Jheeze it took me for ever to build up the guts to prick my finger for a blood sugar hahaha, it's just not right having a needle and stuff come out of it and it not go into a vein!! Lol it's only for a week to adjust and get the levels correct then I get switched onto tablets. 

Then weeks of getting use to the new port placement, adjusting to the positioning. 

I will be completely comparing it to my last port and prob talking myself into finding every fault I can possible haha

Just gives me something to moan to my poor mum about! Hahaha

So for everyone that thinks I don't moan and I get on with things....never ask my mum hahahahaha

It's just one of those weeks coming up that I wish I could fast forward like 4 weeks time when every thing will have settled by then, and healed and il be used to it all! 

On a brighter note, my cousin sally, her gorgeous son sebby and my auntie Cathy traveled down tonight from Manchester/lake district and it was the perfect thing to distract me! 

Before they arrived I started to become very agitated and couldn't relax! 

They will be with me and mum before I head down to theatre tomorrow! 

Still don't know a time for it all, could be anything from 9am onwards. For hunger reasons I hope it's early, but then again for pain reasons I hope it's later! 

I got gorgeous cuddles with little man before they left, was way past his bed time but was so glad they still came tonight! 

He loves the camera! You can tell he's a De Le Vinge, it's in his genes!!! Ha

Once they left I ran myself a lovely hot bath with radox stress free bubbles, was so nice, washed blowed dried hair as I'm guessing I prob won't wash for a few days now. And started my ivs. 

My appetite has been a bit rubbish last few days, nurse said it could be worrying about tomorrow without realising it. But I've pushed myself to eat some yogurts, cheese string and dairy lea Dunkers ha because I'm nil by mouth at midnight, so i no typically if I didn't push myself to eat I would be starving once it gets to 12! 

They are giving me a bag of fluids over night aswell. 

Mum and Sally coming early to be with me! So fingers crossed I don't turn into a complete cry baby like last time!! 

So I kinda have to mention this on my blog as it would be weird not to after the incredible reaction I have had from it! 

For anyone who happens to stumble upon this blog and doesn't know me, I set up a Just Giving page on Thursday night, and within 21 hours I had reached and gone over my original target of £1000!! 

I was completely gobsmacked it had kicked off so quickly, I set the page up to run until the end of the year and I even thought £1000 was pushing my luck! 

I feel very proud, so happy to raise so much and a bit cheeky because I haven't done anything!! 

The kindness and generosity from people has blown me away, and I have received such lovely messages from people! 

Like I said on my giving page, a lot of the time these pages are set up in memory of loved ones, which is great, but I want to make a difference while I am still around to see it! 

It's so great to be able to watch it happen, I felt like an excited kid at xmas after opening each present! 

I downloaded the just giving app onto my phone and every time I had a donation I would get a little money sound, it was so exciting! 

But now I have gone past my target, I don't want it to stop there! 

If I can raise that much in under 24 hours, what can we achieve until the end of the year!?

I'm sure people will be sick to death of my face popping up on their news feeds. But in my opinion Cystic Fibrosis is still not out in the media enough!

Not considering it is still destroying so many young lives! 

The life expectancy has gone up to 40 now which is fantastic!.... But I barely know any CF people in their 40s, and I certainly know a lot more CF people who sadly didn't even make it to my age!!! And let's face it, I'm getting closer to it becoming a very short time limit unless I get a call for some new lungs! 

The reality is harsh but this is why it is so important to raise money for the Trust, the money is used for many reasons but most importantly it funds research for new and improving drugs and the big word "cure" 

So I have upped the target to £2000 hoping to reach that, it would be fantastic!

I have my own unique text code for my page 

Text SPRO98 £5/10 to 70070 

(All money goes directly to the CF Trust, but the total is added onto my page) 

This is the link for my page- https://www.justgiving.com/Sproglet8 

feel free to visit and leave some love! Xx