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.


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.