A New Bumpy Road

When people hear i’ve had my transplant they get excited and happy for me. It’s great to see so many happy. Be they friends, family or strangers. I never realised so many people cared. Not that I thought they didn’t, but when you see so many people elated for you it’s nice.

But what they don’t know is that although I have a shiny new set of lungs and less hospital admissions I also now have a number of new problems that transplant brings with it. For one thing the life expectancy. Yes I probably would have died within another couple of years at max without transplant. But with these new lungs there’s literally no way of knowing how long I have. It could be 1 more month. It could be 20 more years. But with my old lungs I kind of knew when was a good period and when was bad. There was a time frame of sorts and I knew exactly what each little nook and cranny of those lungs were. Now it’s a different ball game.

With the drugs i’m on they can cause many side effects. Mood changes. Not to mention a constant readjusting of doses and adding and taking away some drugs. One such side effect was the drugs threw my liver off. So I needed a week long admission to get to the bottom of it and rule out anything more sinister. Thankfully it was just the drugs and things are looking better in that regard.

I’ve also just came out of my 2nd operation since the transplant operation. The 1st was to drain a tiny bit of fluid around the lungs. The 2nd was to open up my right airway where the lung meets the windpipe. It was inflamed and I couldn’t get as much air in. I was in and out within an hour of going down to theatre but it still require a 4 day admission. I also have to fly to another country for all these appointments and admissions.

Don’t get me wrong i’m not complaining. I have to do what I have to do to keep these lungs in tip top shape. It’s mentally draining though when you don’t know what certain symptoms are and if they’re rejection. Which i’ve already had once about 5-6 weeks ago. So it was nerve wracking waiting a week to find out if it was rejection again. Which probably isn’t a good sign so soon after the 1st episode.

But now i’ve had a 2nd bout of rejection and they say it can be normal for people to reject a few times in the first year. The doctors obviously prefer not to see rejection but it’s common enough they know how to treat it for the most part. As I said before it’s mentally draining having all these problems, which can be the death of you if not caught early, but I also have the added privilege of living a better, more air filled life now. This 2nd bout is currently being treated with a changeup of medication. But they sent me home so it’s not too bad.

I’ve been doing so much walking and exercise. I’ve downloaded the Fitbit app to keep track of my steps. I try to hit 5k every day. Which is just over 2 miles. But recently i’ve been hitting 10k+. So i’m pushing myself more. Getting out more and not worrying if there’s steps, incline or long walks to get there. Now I deliberately park that bit further away so I can savour the walk. It’s incredibly freeing not having to worry how out of puff i’ll be walking 10ft from my car to an entrance. Long may it continue.


Therapeutic Writing

In a previous post I hit upon the fact writing things down works for me mentally. Some people prefer to open up to others. Some go for walks. Some just bottle it up, I don’t suggest this one though. I like to write things down. These health/life posts may repeat themselves or I may repeat myself in the very same post but the reason for that is I don’t edit or mull over these types of post. I write it off the cuff when the mood hits me and just publish it warts and all. So apologies if I repeat something i’ve said in previous posts.

As I also mentioned in that post I lost my best friend in April last year. He was the person i’d talk to, rant and rave about things that were mentally draining in hospital, just general life crap too. He was open with me and we’d often have the same things to moan about so it was good to have someone in the same position that understood exactly what we were going through. We both helped each other immensely. I could really do with his help now. It’s times like this I really miss him when mentally things are getting on top of me.

It also would have been his 30th birthday a few months ago. I was in hospital at the time. Thinking of him. What could have been had he got his new lungs in time. I bought myself a small bottle of whiskey to raise a glass to him that night.

That was my previous admission. I’m back in now just after Christmas. Thankfully I was ok before Christmas and was able to spend the holidays at home. There’s quite a lot of changes on the ward now. Without going in to details it’s incredibly draining with the upheaval. Many patients won’t see much difference or frankly won’t care but I definitely see the changes and they aren’t for the better.

I try and be as little a burden as possible in hospital. The staff know me well. I tend to moan a lot when i’m in. The problem is I don’t like a lot of changes with my health routine. Even slight changes can set me off. Many people will think i’m being ridiculous and I probably am but I just don’t like the ever growing changes my deteriorating condition brings with it. The staff are often amazing. They do go the extra mile for us. I try to do as much of my own stuff myself so they don’t have to. I try not to cause problems that will have them doing more work. That’s where the problems come in sometimes.

My best friend and I would often be in together. We’d phone or text each other from down the hall and have a little moan and get it out of our systems. Offering each other advice or helping one of us see if that problem at that time is a battle we should be fighting or ignoring. The last few years we had a lot of phone calls that were pretty much half an hour to an hour of moaning from one or the other but we always felt much better after it. Now to not have that outlet it’s eating me up. I feel like sometimes i’m one disagreement away from a full on breakdown.

As i’m pretty sure i’ve stated before, this blog was never intended to be about my health. I thought I may have written the odd little post here and there scattered amongst the film/games posts. But then I never envisioned losing my best friend. I always hoped he’d get the call for his new lungs. Obviously death was always in the back of our minds daily.

We used to joke about whether we’d be alive to see certain films or play certain games that were yet to be released. One that sticks out in my mind is when him and I were at the cinema seeing either Avengers or Avengers: Age of Ultron. We laughed about how many more films were in the pipeline and the fact they were building up to what became Avengers: Infinity War and Avengers: Endgame. In a cruel twist of fate he died on the day Avengers: Infinity War was released. I went to the cinema on my own a week or 2 later as I didn’t want to see it with anyone else. I was still a patient on the ward, yes I was there when he died, and I went down the street to the cinema early one morning when I knew it wouldn’t be busy. Every time I watch that film now I think of him. Every time I see pictures or snippets from Avengers: Endgame I think of him. It’s a silly thing to think of but that memory always stuck out of us in the cinema watching one of the first 2 Avengers films. I don’t know why because we pretty much joked about dying every single day. People in our position tend to have a morbid sense of humour.

Anyway, as I was saying, this blog wasn’t intended to be such heavy reading. I never thought or still think anyone will ever read it. It’s just somewhere I like to come to write my thoughts on whatever topic i’m thinking of at the time. Partially to better my writing too. I can read a previous post months down the line and correct whatever doesn’t work grammatically. But these health posts I don’t like to re-read again. Well, I haven’t read a previous health post yet. Not sure I want to either. Also, I wanted to create this blog simply for my son. If the worst happens to me when he’s still young he can read this blog in the future and maybe get a little idea of my life and personality.

Ok, this post has gone on long enough. I seemed to go off on tangents at times I think. Maybe, maybe not. Who cares.


A Call to Lungs

A little while back I posted about the loss of my best friend due to Cystic Fibrosis and the mental struggle I was going through at the time. Well this post is related as he was waiting on his call for lungs and he had 6 calls to travel to Freemans Hospital in Newcastle. None of those calls had lungs good enough for him.

Now the reason you can get the call and not receive new lungs is because when the staff know the lungs will be available they don’t know what condition they’ll be in. It’s all very quick and frantic to get things in place. So you travel all that distance, for us we need to get an air ambulance which takes an hour, and sometimes sit around for hours to find out if you’re going to have this life saving operation. My friend had to do that 6 times. Ultimately he never got his new lungs as his CF infected ones just couldn’t hang on.

I never knew what way he felt or how it affected him properly until I went through that very same process myself recently. I’ve been on the transplant list now since early this year. Only a few months later I got my first call. There’s nothing anyone can say or do that can prepare you for this call. Everything goes through your head. If the operation goes ahead how long will I live after? What if I pick up an infection during the operation? What if I have a stroke? What if I die? All these things are very real concerns as they are risks.

A double lung transplant is the trickiest of all the transplants. It doesn’t cure the CF. Your new lungs just don’t have CF anymore. But you do. CF hits so many other parts of the body. Half of those transplanted live past 5 years. A few live to the 10 year mark. Very few make it to 20 years and beyond. Your body is constantly fighting the new lungs as they’re seen as a foreign entity in the body. This is why you take numerous anti rejection meds. They help the body sustain the new lungs.

Anyway, when I got the call I was in bed sleeping. It came at 1:43am. It was very surreal and I couldn’t wrap my head around it. Once I hung the phone up to ring the family members (you can bring 2) that were travelling with me it properly hit me. The worst part was the realisation I had to say goodbye to my son. This operation could kill me, or I may have picked up an infection after the operation which could also kill me. There is also potential of stroke which would kill me. So basically I was preparing for the worst case scenario. Looking at my little boy and how happy he was being up so late with all the grown ups (both sets of his grandparents were there as well as his mum) broke my heart. He was running around having fun and all I could do was just act natural and play with him. He’s currently too young to understand about transplant but he knows daddy goes in and out of hospital. I’m fighting this disease for him. I’m hoping transplant is successful for him.

We got to the hospital at about 6:30am. The transplant coordinator, the person that makes the call to you, came in and discussed what was happening. We were waiting on the lungs being checked to see if they were a perfect match as well as in good enough condition to use. Lungs can have various problems. They won’t be perfect. I could get a 60 year olds that used to smoke 20 a day and never worked out. Or I could get a 25 year old fitness freaks lungs that were in perfect health. You just don’t know. It’s the chance you take to get those extra years of life. But the coordinator came back shortly after 7am and explained the lungs inside were great but unfortunately outside had air pockets which suggested a lung condition like COPD or similar. So the lungs weren’t good enough to use in me. Ultimately I was happy. I needed that call and “dry run” basically to wake me up to the realities of what i’m going to go through as well as what my friend had to endure 6 times.

My friend was in a similar boat at the start. He was on the list for 6 years and the early calls he was kind of relieved the operation didn’t go ahead. But towards the end he, and all of us, were desperate for him to get new lungs. He didn’t have long left and he got a call, but he couldn’t get those lungs either. It was his last call.

It’s hard to describe but since his death I feel both closer and further away from him than ever. I realise that’s a contradiction but it’s the best way to describe it. We spoke pretty much every day. Not having him to speak to is maybe why I feel such conflicting emotions. It’s also hard knowing towards the end when he had calls how hopeful he would have been only to be told the lungs couldn’t be used. His future was slowly being ripped from him with every unsuccessful call.

If anyone at all has read this and would like more info, or to possibly sign up as a donor, then here’s the link. Just know, a donors organs can save/transform up to 9 lives. Not only that you save far, far more people than just where the donated organs go but you save family and friends from going through the anguish of losing a cherished one sooner than needed.


Addicted To Codes

Since I posted a little about my health last time it’s safe to say I spend quite some time in hospital for lengthy admissions. Ever since I was a baby i’ve been in and out constantly. Some admissions recently have lasted up to 7 weeks. So it’s essential to bring in your own entertainment.

When I was younger i’d bring in whatever gaming console or handheld I was playing at the time, which passed the hours in seconds. I would also bring in plenty of VHS tapes. Then DVD’s in later years. Then Blu Rays after that. Now it’s digital films.

I’ve never liked going digital completely but when it comes to digital codes, Ultraviolet codes, i’m addicted to buying them for my hospital stays. I have Netflix and the Sky app as well to watch along with my digital film collection. I still buy Blu Rays regularly as i’ll always love owning the physical media of something, be it games or films, but not all the films come with codes.

I still haven’t ventured in to paying full price for codes from digital retailers like iTunes or Google Play. I only buy my codes from eBay or use the ones I get with the Blu Rays I buy. I’m not against buying from iTunes or any other digital service as i’ve currently added a few films to my iTunes wishlist. It’s mostly horrors which I can’t get digital codes for and there’s a good chance they won’t ever get an Ultraviolet release either so buying from iTunes is probably my best bet if I want to watch them whilst in hospital. Yet i’m still hesitant in paying near full price to Apple or Google for the digital version of a film when I can get codes off eBay for between £1-£3 each. Sometimes the digital price on those retailers sites are more expensive than the physical Blu Ray release, which is madness to me. I don’t care about ease of use with the digital collection, it’s much cheaper for these companies to sell a digital code on their site than having to manufacture a physical release and ship them out. So the digital prices should be much lower than a physical price.

Rant aside my digital collection has grown over the last year. I have around 150 digital films. Not many compared to my 400+ Blu Rays or the 800+ DVD’s I used to own. It’s still a nice little selection to have for when i’m stuck staring at 4 walls for weeks on end. Not to mention the many thousands of films/tv shows I can access through Netflix and Sky on their apps. Now i’m off to see what new codes have been listed on eBay 😃


Forgive My Frankness

When I created this blog I wasn’t too sure if I would talk about my personal life. I’m still unsure as to how much i’ll say now as I type. The blog’s initial aim was and is a place for me to write about things I enjoy. Be it a film, a game, a book or anything in between (I’m definitely steering clear of talking about my beloved Arsenal). Somewhere I could practice my writing and put down my thoughts on things. Well this is probably the best place I can go (since barely anyone will read it 😏) to open up about things that have been a struggle.

A lot of people don’t open up about their struggles. We know as people we can be fragile and holding things in is detrimental to our mental health. People don’t like to be a burden to others. Or they’re too “strong” to seek advice. So this is where i’m going to open up.

I consider myself strong mentally as my best friend is someone I talk things through with a lot. See, we both have a medical condition called Cystic Fibrosis. So we could chat to each other anytime we have a problem or are struggling. I’m always there when he needs me and he’s there when I need him. It works. We’ve been best friends for years. Going through an isolating illness, due to cross infection CF people must keep away from each other, we help each other through everything.

Well on the 25th of April, only a few weeks ago, I lost my best friend. We were both patients on the ward. I would walk up to his room some evenings and sit for a chat (no we didn’t listen to our team about keeping apart). We texted every day for years. I was talking to him only the night before. He was only 29.

Over the years i’ve lost countless friends to this disease. Some in my childhood. Many as adults. There were about 40-50 people I knew and grew up with from the children’s hospital. I can probably count on 1 hand how many are left.

My best friend was on the transplant list. He waited and waited. Calls came and went. But none were acceptable lungs. He fought long and hard. He held on as long as he could. I wouldn’t say this out loud to his family but I think he was just too tired to fight any more. I tried so hard to push him. He tried hard to do things that would help him. But his energy was just gone. His mind was tired. The mountain was just too big.

I’m now at the stage where I need a transplant asap. No matter how hard it gets I will not give in. But i’ll admit it’s extremely tough at the minute. There’s so many other problems CF can bring. Not just lung problems. The fact I can’t just text my mate, which i’ve been close to doing multiple times then realising I can’t, to talk through things is putting so much pressure on me mentally. People offer their ear all the time. It’s not the same. Yes they’ll listen but nobody will truly understand. I don’t have many people I can open up to in my life (in the sense I feel comfortable opening up to them properly) but now i’ve lost the one person who knew exactly how it felt to go through the same shit. Sometimes, even without this disease, people can only open up to someone they totally feel comfortable with. This is how I am. I won’t open up to just anyone. I need to feel comfortable enough to go to that place with them. I do have lots of friends and family, who i’m sure would all offer an ear, but it’s not the same.

This post may not make sense. I was rambling and my mind is all over the place currently. But I think it’s cathartic to write down your troubles. Just like it’s cathartic to talk to someone about your problems. Whatever works for you do it. Don’t let things eat you up.