It started with the flu, it could of ended so much worse!

So where do I start......

I caught the flu around 2 and a half weeks ago which required some anti viral medication from Papworth, the tables I was given were a 10 day course in the hope it would stop the flu getting any worse and luckily that happened. However, after the flu went away, I was left with a slight wheeze.

As the days passed by, the wheeze gradually became more of an issue, so I called Papworth to ask their advice, they were happy with my numbers  (temperature, weight, blood sugars and lung function) the 4 things I have to record daily along with all the meds I take and the times taken, because all the data was ok the hospital wasn't worried and said to keep my appointment for September the 10th but if I deteriorated before then not to hesitate and call them back.

A few days passed and the wheeze was getting worse and I was beginning to become breathless when walking, so once again I called Papworth but yet again all my numbers were still ok and I was informed I'd receive a call back if the consultant was worried or wanted to change any medication. I wasn't called back so I wasn't overly worried with the symptoms I was showing.

Friday 4th of September morning came and I woke up wheezing so badly I sounded like an air raid shelter siren. I called Papworth again and was advised things were ok because my numbers were still behaving. As the weekend passed by I called Papworth again Sunday morning and was told to call later if symptoms got worse if not call Monday morning to speak to the team and they would advise on what to do, this finally gave me a little relief and I was trying to get through the day without losing my breath or struggling with the wheeze. I wasn't managing well, but still decided to go and watch the Solihull Barons play ice hockey against Telford in Solihull ice rink just down the road from where I live. I got to the rink and really struggled to walk around the ice pad to where I usually sit with my group of mates and when I sat down I was struggling so badly I felt like I had my old lungs back and was struggling to get my breath back. This happened three more times while at the rink and when the game ended I called Papworth immediately and was advised by the doctor on call to attend A&E to have a chest xray to rule out any possible collapse, pneumonia or infection within the lungs and have a nebuliser to attempt to relax my lungs.

I got to A&E with Emily and I was taken straight through to majors and seen straight away. I was sent for an xray and thankfully it showed that all looked well within my lungs. I was given a neb and I seen the doctor, he took a full blood count and proceeded to prescribe me with IV antibiotics and tell me I needed to be admitted, this came as quite a big shock to me as I thought I'd go there, have a couple of nebs and be sent on my way with extra nebs to get me through until Thursday the 10th.

This wasn't exactly what happened and I was moved to AMU, from AMU I was told I was going to be transferred to a ward and spend the night in heartlands hospital..... that's another story for another blog once that's all sorted out.

I got out of heartlands at 6am Monday morning after arriving around 10pm and went home to have 2 hours sleep before waking Emily up wheezing so loudly. I got up and called Papworth as soon as I knew there would be someone in clinic and was told to get here asap and been seen by Jas (transplant consultant) to be checked over and possibly have my bronchoscopy bought forward from Thursday.

When I got to Papworth I was told there was a bed waiting for me on Baron ward, so me and Emily made our way up to the ward and waited to be seen by Jas and to be told what the plan was. When Jas came up to see me I explained all my symptoms and told him what had happened. He got me to display my wheeze to him and straight away he said he had an idea what it was that was causing the wheeze. He told me that he suspected I had a possible narrowing with my airway and he would go and look at previous pictures taken from my other bronchoscopies and see where it could be so he knew where to look the following day.

He went away and told me that he would have me down for my bronch Tuesday afternoon and we could get the wheeze sorted out. Jas popped back later that day and told me he believed the narrowing was in the left lung and he could sort the problem with the bronchoscopy, so I was hopeful the wheeze would be gone and I'd be on my way home either Tuesday night or Wednesday morning.

Tuesday soon came and I was nil by mouth from 10 am so I could have the procedure done without any additional complications. I waited from 10 am until 2pm as this was the earliest I could go down for my bronchoscopy, I was eventually taken down to have it done around 3.30, and that's where it all began.

I got to the room like normal and proceeded to get onto the table and be set up to have my bronchoscopy. I confirmed my date of birth, who I was etc and they began setting to work on numbing my throat and then ultimately sedating me. Once I'd fallen asleep they were all ready to start my procedure when my oxygen levels started to drop at quite a rapid speed, when they hit 58% (anything below 95 isn't great for new healthy lungs, anything below 90% is dangerous for anyone) the call was put out for the crash team to rush to the room I was having my bronchoscopy, by the time the team reached the room I was in respiratory arrest, and my oxygen levels had hit the lows of 45% amd I'd stopped breathing. Thankfully the crash team bought me around and I was woken up to make sure I was ok and to keep making sure everything was ok, at the time I had absolutely no idea what had happened or what was going on, i remember small bursts and flashes but mainly i remember being extremely confused, i rember asking if Emily had been called to inform her something wasnt right even though i didnt realise something wasnt right. I was rushed from the bronchoscopy room around the hospital via ambulance to the Critical Care Unit. Once there I was given general anaesthetic and an emergency bronchoscopy was performed and the narrowing of my airways was confirmed, the airway which should be the size of roughly a 10p in diameter had narrowed to a pin prick in size.

They quickly froze my excess tissue that was built up and grown within the airway to kill it and remove it and a balloon was inflated to dilate the narrowed airway. After Jas had done this he took out the bronchoscopy scope and allowed me to recover in CCU over night. Once this was all done Emily and my parents arrived and I saw them in the CCU however I hardly remember it and I don't remember the conversations I had with them.

I woke up on Tuesday evening and got my phone to contact Emily and my mom to find out actually what had happened to me to make me end up in CCU! Mom and Em both explained to me what had happened and I was in a little shock myself. Of course everyone at home was really shocked and shaken up. I didn't manage to get a wink of sleep in CCU but this was simply because I wasn't tired so I sat up all night chatting to the nurses while they worked away all night doing the best job with each patient they had to look after on a 1-1 basis! The staff in Papworth CCU are second to none, it is the second time I've been in there and both for major things, and I have felt safe from the second I've been compusmentus both times! Excellently trained staff who know their job isn't just to nurse but also care! I cannot fault a single thing they do!

After spending the night on the CCU I was moved back to Baron ward as I no longer needed 1-1 care and was off oxygen and breathing well with little wheeze. I saw Jas and he showed me the pictures and explained that I needed another bronchoscopy tomorrow (Thursday) and that he wasn't 100% sure what would need to be done, he said he would like to freeze some more of the excess tissue which will remove it from the airway, but he doesn't know what it will be like until he goes back in, he said he may have to fit a stent, but that then comes with a list all of its own of complications after its fitted, or he will redilate the airway and see what it's doing and make his decision once he has eyes on the affected area of my airways! I myself won't know the results or what he has had to do until I wake up later Thursday afternoon when I receive my results and a summary of what's happened during the procedure.

Tomorrow is going to be a very anxious day for me as I don't exactly know what's going to happen once Jas is inside the lungs, and it's going to be an anxious wait to go to the room as I is the first time of being sedated after almost dying!  I know I'll get through it and whatever happens ill have the support of my family and my best mates and of course everyone reading my blog!

I will overcome whatever I need to to live the life I want with Emily! I cannot thank my donor and their family enough for this second chance in life, and I will do everything possible to live the life I deserve!

Invincible?

All my teenage life I thought I was invincible, I thought nothing would stop me. I didn't listen and I didn't care. I would get unwell and my lung function would drop, but I would come back out of hospital after IVs better than ever and I thought I was unstoppable.

I didn't need to listen to the doctors, I didn't need to listen to any of the other patients because I wasn't them it wasn't going to happen to me I was invincible. I was told by the consultants, the nurses, the psychologist, the dietician, my parents, my brother, my grandparents, friends of the family, my friends, other CF patients that were older than me, but I didn't need to listen or pay any attention to that I am Callum, and I was invincible.

Well turns out I'm not, turns out everyone was right. They wasn't just saying it because they had nothing better to be doing with their time. They wasn't saying it so that it improved their health or the length of their lives, turns out they were all doing it because they all cared about me. All them people telling me the same thing but I knew better!

Fast forward to 2015, I'm now 24 and im giving the same lectures I had to younger patients and praying they listen but knowing deep down they won't pay an ounce of attention until that life changing event happens and they almost lose their life like I did! Nobody is invincible when it comes to CF, we all fight against it, but ultimately it will always have an upper hand on our body and the only tool in our armour we have is to do the treatment we are prescribed and keep our lung function as high as possible for as long as possible, but when your lung function is high, treatment isn't high on the list of priorities because 'you can afford to lose a bit' well in reality you can't!

I look back at life and often wonder would I do it any different if I had my time again, and I'd love to say I would, but hand on heart I provably wouldn't. So what gives me the right to tell others what to do? I don't suppose I do have a right, however I just want the best for everyone else, like everyone wanted the best for me!

So if your reading this and your not very compliant with treatment, you miss your tablets, or nebs and think to yourself it'll be ok, I can hand on heart tell you, you won't!
Do you want to be on oxygen 24/7?
Do you want your bedroom being bought downstairs as you can no longer climb stairs?
Do you want to have to be washed by family members at 24 because you haven't got the physical energy to do it yourself?
Do you want to spend like I have recently and will be until I get my call for lungs around 80% of your life in hospital?
Or ultimately do you want to be waiting for a call for a chance of a second shot at life aged 24 when you can live a lot longer with your own lungs?

If the answer to any of those questions was no then I plead with you please try and up the amount of treatment you do as something is better than nothing and everything is better than something!

Creeping up to 3 weeks

I've been on the active list now for almost 3 weeks, and boy has it been filled with ups and downs.

The day I was listed it felt like a massive weight had been lifted off my shoulders and I felt massively relieved that I was finally active and that call could come at any moment. I was over the moon with the speed at which I had become active on the list as well so all in all I was pretty happy with the outcome.

Unfortunately that happiness was short lived, and within a day or two my happiness and positivity had sunk to rock bottom and I was feeling proper crap! I'd gone from having deadline dates to have everything sorted for to 'wait for a call' a call that could come anytime, it could be in an hour, a day, a month or a year, we have no idea at all when it'll come and to me that's the hardest part to deal with. I am a really impatient person, so to not have a date or goal to aim for is so so hard.

We all know what it's like waiting for a delivery when they give you a window of 8am-8pm and you rage because you want to do things with that day and you joke that as soon as you go the toilet the door bell will go, well imagine being told, you'll get your call, it'll be between now and the day you die..... its a little frustrating to say the least!

After the first week of feeling down in the dumps and fed up with things,I gave myself a kick up the arse and my mood has gradually picked up with regards to waiting for my call.

However making things worse/harder has been the fact that I've been in hospital for what feels like forever,I had been in a week before I was listed and ended up doing a 3 week stay on IVs to no real change in my chest or breathlessness, so I struck a bargain with the team that if they let me leave for 6 days so I could spend time with Emily during her days off work I would return for another 10 day stay for IVs when she flew back off to work and they were happy with that. So I'm now back in after my 6 day stay at home which was amazing! The best 5 days I've spent with Em for a while and it was long overdue! But I'm back in NUH now for 10 days then I'm escaping again so I can spend the weekend away with Em before she jets off again with work!

My consultant has written to the consultant at Papworth to let them know the changes in my health and to let them know I am deteriorating slightly at the moment just so that Papworth are fully upto date with my situation which is good. I call them every other week and let them know how I am and the hospital call them with every blood test result I have to keep them updated with that.

I haven't got the energy or breath in my lungs to wash myself at the moment and I am relying on Emily more and more each day, I'm 24 and I am like an 84 year old with my mobility and health! I struggle to walk 5 metres to the toilet and I have to sit down when I get there to get my breath back, life is getting pretty difficult for me at the moment, I know it may not be permanent but for now it's really draining emotionally and physically. Having to psych myself up to go for a wee isn't something I ever thought I'd have to do at the ripe old age of 24! Life is definately a lot different to how I imagined it but with the power of science and the beautiful NHS I will get my life back and live the dreams I have with Emily and live a long happy and healthy life!

If anyone is interested in signing up to the donor register follow this link and it's literally 2 minutes and you could save several lives!!
http://www.organdonation.nhs.uk