When stepping out of my CF comfort zone results in an amazing adventure 🦇

Our recent holiday saw us head off on a spooky Halloween half term, Dracula themed city break to Cluj-Napoca, Transylvania. A strange destination some might say, lets face it Romania probably isn’t at the top of everyone’s must see destinations list, but as always it’s about doing something different and making it an adventure for the boys. It’s also important to me that the boys have a realistic view of the world, not everywhere looks like the Bahamas or Maldives and not everyone in the world lives life the way we do.

As with any trip the boys go on, especially as far as Chester is concerned the preparation starts a long time before, so by the time we arrived in Romania my research had been done. I looked at the local hospital and specialist centres “Just Incase” and read reports that they probably aren’t the best or cleanest hospitals around, but having identified there was a CF community I was hopeful if anything went wrong, someone, somewhere would know something about CF and in the absolute worst case, we were only there on a short break and could easily get a flight home quickly if needed.

It wasn’t until we arrived with his bag full of medical supplies and expensive equipment and I saw just how poor some areas looked that it really sunk in just how lucky we really are, and just how lucky Chester is to have been born in a country such as ours. 

As we were being transferred from the airport to collect our hire car the driver mentioned a visit to a “Salt mine” is a must while in Cluj. I must admit I didn’t think about it again, a Salt mine just didn’t seem interesting or appeal to me in any way and as soon as I hear mine or cave, I instantly think pseudomonas and that’s enough to put me off.

It wasn’t until we had been around the city looking at the beautiful buildings and monuments in the old town, but also looking on in sheer horror at the state of the concrete tower blocks that make up the majority of the City that we wondered what else we could do in event of bad weather. 

We had already decided that Corvinus Castle was a must for any boys on a Vampire hunt. A trip we were not disappointed by, especially Oakley who was amazed at finding some “blood” (Heinz tomato soup looking substance) on the stairs which only added to his fascination of vampires and bats and not forgetting the ‘Witches birds’(crows).

We knew rain was forecast so we decided we would think about the salt mine, I was anxious at the fact it was below ground, damp and dark and worried that it wasn’t a planned activity that I had done research on, if I’m honest I was out of my comfort zone as far as CF goes.  

With Chesters track record of growing Pseudomonas it seemed like the worst place we could take him. I emailed his consultant who said the trip would be ok, and then I started to look further into Pseudomonas and CF in general in Romania. I was horrified to read that 50 per cent of children diagnosed with CF don’t survive to make it into adulthood, it angered me that in this day and age with precision medicines and treatments that half the CF population in this country would never become adults. It made me genuinely grateful that we have such a good health service and that Chester has the ability to do what half their CF population doesn’t.

I was also unnerved by the fact there is a high Pseudomonas rate amongst their CF population. This set me off questioning myself about whether or not the Salt mine would be a good idea. I hated myself for questioning the Doctors, I was angry that CF was having such a huge impact on our plans and I was sad at what I had read, I couldn’t stop thinking about how lucky Chester really is and I couldn’t help but worry about this decision.  

The majority of decisions we face as CF parents impacts on our children’s health in later life, it makes me feel sick most of the time, but with most decisions I make, I have to weigh up the risk versus his quality of life and not forgetting Oakley and his need to experience different things. 

The more research I did into the Salt mine at Turda the more I read about it’s positive effects of those suffering with respiratory illness such as Asthma, COPD and CF, there is even a clinic where treatments can be booked. This was great news but then it set me off thinking about cross infection and the high Pseudomonas rate, I always seem to overthink, but mainly when Pseudomonas is the risk. 

After thinking about it non-stop for almost a day, and weighing up the pros and cons we decided that not only would it be an amazing experience, after all there was a Ferris wheel at the bottom of this mine as well as rowing boats, but we knew it was probably the only time we would visit this area.  

I know if he’s caught Pseudomonas again I’ll blame myself and feel like utter crap, but looking further into it, he’s more likely to have caught it from another child with CF than from the mine because the mine most certainly was too cold for a bug like Pseudomonas. 

I managed to keep Chester in a rowing boat without the need to shout man overboard and it was a fantastic experience that they both loved, that was until they were outside rubbing their eyes with salty hands. 

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