Do not recusitate - New realities

Well its been a while since my last blog. So much has happened and so much has changed and its all hit me oh so suddenly. I feel like overnight I've been plucked from one life and dropped into a warped version of alternate reality. I started this blog to raise awareness of CF and organ donation but also as an outlet for me to express things. And sometimes no matter how much I speak to the ones I love I need another way to get out my feelings and get it all down to help me.

Things were going OK I suppose since I was put on the transplant list. I was plodding a long with no major changes. I went on a couple of weekends away with friends and our dogs and had a wonderful time enjoying the sights. It was so much easier this year with my wheelchair as I could go out all day and not worry about getting tired and it being too much. Until a few months ago that was. I felt a pain in the top of my chest. Its a pain I instantly recognised as I've had it before. The pulling of what I assume is my pleura as it collapses away from my lung. I rang my CF team and went in straight away dreading the next step. Luckily it was only down at the top so not chest drain for me yipee. I spent a week in hospital on IV anti biotics and lots of extra physio and was discharged to continue at home a week later. I was home 6 days when all of a sudden I felt it go again. But I knew straight away it wasn't small like before. The breathlessness kicked in and I got my sister to take me to local A&E straightaway. Usually I would go straight to my CF team but being 45 miles away and it being rush hour I decided against it as it can be life threatening. That was the biggest mistake. My local hospital just didn't understand. They wouldn't listen to me. I was gasping for air begging them to put a drain in. I needed to relieve the pressure on my chest and be able to inhale again. Fast forward 3 hours and they finally did that and I felt instant relief. I was transferred to a ward to spend overnight and hopefully get transferred to my CF team the next day. Middle of the night came and it started happening again. Straight away I knew the drain wasn't working and my lung had re collapsed. But they wouldn't listen. After hours of being unable to breathe and them pumping me full of oxygen that my co2 levels went went through the roof and I was classed as in respiratory failure they wanted me to go to ITU. Still without them listening and fixing my drain!! Finally the ITU guy listened and fixed it and all was good again. The next day I was blue lighted to Leicester and I finally relaxed thinking the worst was behind me... How wrong was I!

That evening I started to feel breathless again and xray confirmed lung was down again. The drain had kinked and twisted so the doctor re positioned it and then my lung came up again. Later in the night I felt like I couldn't breathe again but this time the xray showed my lung was up so I couldn't understand why I couldn't breathe. I don't remember much as I was high on lots of painkillers and drugs but I do remember the physio and consultant taking my dad and fiance away to talk to them. I was too exhausted to think about it and went off to sleep.I don't remember much of the next few days. Neil stayed in the chair next to me for the next week and my sister cancelled her holiday and did the same. I kept telling her to go but she wouldn't listen. Anyway long story short I was very poorly and weak and my infection wouldn't get better. I was in hospital 7 weeks before I went home. I was a shadow of my former self when I went home but slowly i managed to build up more strength and ween down my oxygen. It hit me hard though.

I knew I had been quite poorly but didn't allow myself to believe how much. People said throw away comments here and there that I either didn't fully listen to or refused too I'm not sure. 2 nurses spoke about how that second night they went home and couldn't switch off and sleep because they were so worried about me. Also the physio said weeks later that I could have not pulled through anyway I brushed that off.

Until this week. Finally doing better I got myself to my check up all by myself and was sitting in the treatment room and my nurse was busy on the ward. I flicked through my notes whilst I was waiting which is something I always do. I wasn't prepared for what happened next. Something jumped out at me a form I had never seen before. It hit me like a smack in the face and I just sat there in shock unable to fully comprehend what I was reading. Its like it wasn't registering in my brain. Eventually I managed to compose myself and read it. I was basically a DNR (do not resuscitate) form signed by my doctor the day after I arrived from A&E. The day he took my dad and Neil away for "a chat". It stated how it wasn't a good idea to do CPR on me if my heart stopped. (Basically in end stage CF if you ventilate somebody that's it. You cant get them off it. And transplant is out the window anyway so they are stuck.) It stated that it had been discussed with my family and not me as to not cause me undue distress. I was devastated. Not that I thought it was the wrong decision. The fact my poor family were basically told I might not get better and there was nothing else they can do and I had no idea. I had no idea how close I could have come to the end. That terrifies me and upsets me. I spoke a lot to them after I saw that form. They were not told specifically about DNR but it was explained to them that apart from what they were doing there was nothing else they could do for me. How awful knowing my family were told that. That this shitty disease put them through that!

They have now been honest with me about what down those in those days. How upset they were after the chat with my doctor. Neil went home and cried, packed a bag, said goodbye to our dog and came to live with me next to my hospital bed for as long as I needed him too. My dad wanted to keep what had been said from my sister to protect her knowing how upset she would be. But decided against it because if she had of gone on holiday not knowing and the worst happened how would she ever get over that? She told me my dad picked her up from work that day and told her in the car. They slept next to my bed and visited everyday and managed to hide their upset and distress so I wouldn't see how bad things were. That must have been so hard for them to do. I have severe anxiety and not knowing the truth about how bad things were at the time was the right decision. I don't think I would have had the strength to fight if I thought it might have been a lost cause. But knowing what my family went through and I had no idea. I was just drugged up and in a trance from being so poorly and on so many drugs. Its been hard to hear. But something I needed to hear now. I need to keep fighting I am not giving up! That's the thing about organ donation it doesn't just affect the person waiting. It affects every member of the family and friends too. In some ways what they wen't through was worse than what I went through that week. Mine might have been physical pain but that emotional distress watching a loved one battle stays with you forever. Please help spread the word and encourage people to sign the donor register. One more bad spell or lung collapse like that I might not be so lucky xx

 Rocking the sexy walker for physio!

 In the ambulance 

Sleepover club!

I am officially on the transplant list!

Well the title says it all really. As of 2 weeks ago I am now on the list for a double lung transplant. I know deep down its the right decision but it didn't make it any easier to make. I didn't know what I was going to say until I got to my appointment. But whilst I was sitting in the waiting room I looked around at some of the other pre transplant patients in clinic and saw how unwell they looked. They were hooked up to and on large amounts of oxygen. They were completely wheelchair bound and I don't ever want to get that sick. Recovery is so much harder the poorlier you are and the odds are better stacked towards you if you still have some strength and muscle when the call comes.

No one can tell you how you will feel embarking on this journey. My sister and many other people I have met online have been here but their experiences and feelings are their own. I feel like an outsider. A few other people I know have been desperate for the call to come and excited when it has. I'm terrified. Every time the phone rings I pause in my spot unable to move towards it for a second. A couple of times now I have got to the phone eventually and a withheld number is on the screen. I freeze again not wanting to answer it and when I do hoping it isn't the transplant coordinator on the other end! I actually considered not going on the list. I wondered whether I could truly live with the waiting and the anxiety it would cause. Then actually under go such a massive procedure. I'm not good with hospitals and pain. Just because I've had to deal with them my whole life doesn't mean I am not as scared of them as the next person. Which ironically certain people actually assume believe it or not. Because CF has always been my life they think its normal and perfectly ok for me. So they don't ask how you are or visit you when in hospital. Just because something is a normal part of your life doesn't make it 'normal'! But in the end I thought about my family and friends and the people I would be leaving behind. I realised I am not ready to die and am not going down without a fight. I am in the middle of making a 'bucket list'. And actually its not things to do before I die its things that I want to do to ensure I'm living life to the full. What do we call that?

So what else has been happening? Not much actually have a few things coming up though which are exciting. Starting with going to see Rhianna and then Beyonce in concert. Then we have tickets to the athletics anniversary games at Victoria park in July. I'm so excited I love athletics and have never seen anything like it by actually being there. Just watch it on the TV. Something new and fun to tick of my not bucket list! I used to struggle doing big days out like these as its to much for me. But as of this week I have a trusty friend to help me get out and about more. I now have a wheelchair. When my physio first mentioned the idea I was horrified! A young lady like me in a wheelchair no thanks. But actually its going to help me no end. Yes I can get out and about when I'm not majorly unwell but I cant walk far or it just takes forever. So this way I can go out spontaneously and not worry about whether my lungs can manage it. The amount of stuff I have found myself not doing because it will be to much means I'm sitting at home alone and not living! Life is for living even if it means your trusty friends have to push you around! Now if someone says lets go shopping for the day. I can say yes because I don't have to worry about walking and struggling. I will walk when I can and only use the chair when I hit my limit because I cant risk de-conditioning or I will go downhill quicker. But I'm excited for long dog walks with Neil in the summer again rather than sitting at home whilst he goes. So if you see me please don't stare like im a leper as it makes me feel more uncomfortable!

We are also in the process of re doing our whole living room. Something which I am excited about. It's a little project and gives me something to focus on for now. I've been trying to de manify it since I moved in 9 years ago and its finally being done wohoo! Just got the new sofa, doors going on this weekend, furniture delivered next week and then decorator is coming in 2 weeks time. Cant wait to go shopping for all the finishing touches!

So thats all from me for now I am just going to leave this link here so you can take a look and hopefully sign up to be an organ donor!
https://www.organdonation.nhs.uk/

The hardest decisions

So I wrote this a month ago and never got around to finishing it as ended up in hospital...

Well what can I say it's been a weird crazy emotional few months.  My head is all over the place and I'm facing some rough decisions. I know I need to make a plan but I just don't feel like I can right now. So it all started with my 3 day transplant assessment. I'd really got my head around everything as was feeling positive going into it. The 3 days were physically and emotionally draining but I expected that. I had so many tests done and lots of scary but important talks with the transplant nurses, coordinators, surgeon,  anethatist and the consultant. During  these talks they have to give you the bad as well as the good aspects to transplant. It's hard to hear all the risks and things that can go wrong but you have to know so you can make an informed choice.

Me doing one of the many lung function tests at my assessment

So apparently I did really well on my walk test and my lung function showed a little higher on their machines. Basically I am borderline for being considered. I am not considered in urgent need this instant and am running out of time as such. So good news I am a candidate there is nothing stopping me being listed which is great news as some people are not able to have one due to other medical issues or bugs they grow, on top of other reasons. Not so good news my anti bodies are higher than they told me last time which means I am most likely in for a longer wait as I am less likely to find a match. So basically if I had 0% or low anti bodies they wouldn't list me yet as benefit has to out weigh the risk and for example there is a 10% chance I'll die in the first 3 weeks. So because I could potentially wait a long time they will add me to the list. Now if it were straight forward and the doctor told me you will die soon without one I don't think I'd hesitate but that isn't the case here. It's a big life changing event not just for me but for my family and friends too.  So I went away to have a think and booked an appointment for a few weeks later. In those I went from saying yes let's do to no many times. Went to my listing talk and asked a load of questions I had thought of since the assessment. And was basically told that although I am not in desperate need right now I may also take priority over someone who has waited longer. Because if they have low antibodies they are much more likely to get another offer where I won't. So I could potentially be called in days or weeks after listing. I was fretting and they could tell I wasn't ready to make that decision right now. After talking it through with Neil and my dad I've decided to wait for now. I need longer to get my head around it all. I'm so scared I'll get called quickly. If I happen to be the 10% who don't make it I can't cope with the risk of dying now when I could of had a couple more years with these lungs. OK not good years but more time with my loved ones. It isn't fair that we have to make these decisions at 29 years of age. What is the right one? I'm so scared and frightened of dying but also the procedure to hopefully save me,  my heads a mess!

Now...
Well it's scary how things can change in 1 month. As I was writing this post I started to struggle more. Long story short ended up in hospital for 2 weeks on oxygen constantly and with high Temps and high Crp that was taking a while to come down.  Finally started to make progress and made it home but was struggling more than usual. Needing more oxygen and feeling unable to do much.

I wanted to feel better for my birthday as it was my 30th this year. This is a big deal for me. I see it as a milestone rather than another year towards old! Most people hate turning 30 I loved it. I MADE 30! When I was born survival age was about 12. I plan on being around for many more big birthdays too. I had a lovely day seeing friends and family and went out for a meal in the evening with some friends. I knew there was something planned on the Saturday but no idea what. So we get to my favourite cocktail bar and friends start arriving. Saying were having a meal and table booked for 8 etc. Then at 8 as head outside there's a stretch limo waiting for me! Was amazing went for a 40 minute drive. Was drinking bubbly and having shots. Then it pulls into a car park I know and all my family and friends are waiting for me outside the venue for my suprise party! Was an amazing suprise. Felt like a movie star stepping out of the limo to flashes and cameras haha. The night was amazing everyone had fun which is the main thing. I realised then how much I struggled. I managed to get around to thank everyone for coming and managed to dance for 4 minutes slowly then rest for 20! I can't wait to be able to dance all night with everyone else.

Me and Neil at my suprise 30th party!

Then on the Monday we went off on holiday for 4 nights with both side of our family to a mansion with hot tub, swimming pool and games room etc I relaxed whole time as wasnt well but was lovely anyway.

So this last month has sealed it for me. I am ready to be listed! As terrified as I am I'm sick of feeling like crap everyday. So I've got dentist in monday and as long as get clear I can be listed after my next appointment in a couple of weeks time!

Thanks for reading!