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.