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I thought I was not going to make it – Carmen Crous

Ever felt like you have just taken on too big of a challenge? Well that was my initial thoughts when I galavanted on a trip to Peru with my family and other half, Fourie.

#CysticFibrosis is a genetic disease that affects the #lungs and digestive system. Most CF patients don’t live to see their 20th birthday (with a life expectancy of 34). Here I was, attempting to go to Peru with a lung function of 45% and see places that included Machu Picchu (a 7-wonders of the world) Sanctuary. It was something I never thought would be possible, even in my wildest dreams.

My journey leading up to the holiday

I sat one morning, 3 weeks before our departure, and thought to myself: ‘what if I don’t make it?’

And no, I’m not trying to be over dramatic here (haha); having very much compromised lung function and attempting to visit a place 3900m (Cusco City) above sea level is pretty damn risky. However, I’ve always loved a challenge and this was just another one for the books. That’s until I told my doctor 2 weeks prior to the trip. Biggest mistake!

He almost fell backwards on his chair and looked at me with big eyes, asking me if I really had/wanted to go?

By now you know already – I did go, but what happened in those two weeks prior to the trip was a mouthful.

I had to do a bunch of blood tests, Lung Function tests, Blood-gas tests to see my oxygen levels in an airplane environment (less oxygen), #cardiovascular tests, cycling tests to see my heart rate and saturations during exercise and and and. It was a stressful time, and everything had to happen at the speed of lightning. I ended up being on the rim of ‘fit for the trip’ with a slight risk of low oxygen levels at certain altitudes. A very high altitude has very low oxygen levels in the air – and this became my biggest bump for the rest of the trip.

It was an anxious period leading up to the holiday for me and my family and every day we fought together for my lungs to improve even just a little. I went to the gym 5 days a week straight; I took in lots of extra nutrients (Ensure) to treat my body with love; I diligently did my treatments and also worked on my psychological/emotional health during this time to be ready for whatever life was about to thrown at me.

Eventually the night came that we had to pack before leaving early the next morning on the 23rd of March 2018.

The Traveling in-between and on airplanes

We had a very smooth trip with minimal layover times between all the cities we flew. On our journey (3rd day) we embarked to go visit Cusco! Cusco is an amazing city in the Peruvian Andes – which was once a capital of the Inca Empire, but now it’s known for its Spanish colonial architecture and archeological remains. The altitude here was 3900m above sea level. We all had to take tablets for altitude sickness 2 days prior to our descent to prevent altitude sickness or at least have more mild symptoms if it had to occur. I instantly felt tight chested and had to put on my oxygen before we left our hotel to explore. Cusco is one of the most amazing places you will EVER visit. The culture was new and the weather was lovely (all seasons in one day) and the people were so kind! It was amazing to see such cultural heritage within each individual that lived there. Most of them wore traditional clothing that danced with colours, textures and a rich history. The city seemed untouched in many ways: shops aren’t allowed to put colourful signs up to market their space, rather everything is in a black/ gray-scale colour scheme. It did not distract you from taking in the beauty around you. The cathedrals were awe awakening and had so much detail to it.

After a few days in Cusco, we left on our 5-day trek.

The 5-day trek including Machu Picchu

Our trip made a complete 180 when we left the city life. Suddenly we were engulfed by luscious and exotic plants and forestry. The pass felt like it was the only road taking us through this place and our eyes could not stop but wander outside. The excitement grew within everyone for what the day was about to hold. Every day we had the choice of either taking the advanced walking route, the medium intensity route or the cultural tour.

At first I was not really bugged by not being able to go on the walks. I knew I didn’t feel well enough and that I had too little energy to complete such a day-trip- therefore I chose the cultural tour every day for the duration of our trip.

Some moments I couldn’t help but find my thoughts wandering further than the mountains around us. I felt small and insignificant. CF felt insignificant. The nature had its way within me, I could feel God surrounding me and sharing with me His ultimate Glory of the Earth and its picturesque qualities.

A cough brings me back to reality: I was struggling to breathe and it felt like it got worse day by day. After I Googled my symptoms, I got an uneasy feeling and decided to finally reach out to my Pulmonologist for his advice. His first response was: Pneumothorax. Get to an ER as soon as possible! For those of you unfamiliar with what a Pneumothorax is: “it occurs when air enters the space around your lungs (the pleural space). The change in pressure caused by an opening in your chest or lung wall can cause the lung to collapse and put pressure on the heart. The opening is not necessarily physical, and can be caused by lung diseases that include scarring and ruptures of the chest walls which will have the effect of a Secondary Spontaneous Pneumothorax (SSP)”.

Panic struck and I had to deal with it as calmly as I could. Not wanting to upset my family – I kept secret the days that I was feeling sick and how it progressively started to get worse until the night before Machu Picchu that I HAD to say something.

What made things worse on that night was that I NOW only could share my intense pain and also what I’ve been feeling for the last few days of our trip. My lungs felt like steel, heavy and unable to expand. I started feeling claustrophobic within my own body.

Within 2 hours we got an ambulance from Cusco to our lodge (which was in Ollyanthamtambo).

With a car it takes about 3 hours, but the ambulance got us to the hospital within 1 hour 30 minutes. It was 02:00am when we got to the hospital. They rushed me up to the xray-department to make sure I didn’t have a Pneumothorax. They took 4 xrays and could not pin down a #Pneumothorax and therefore took me to the CT-scan machine. Sometimes a Pneumothorax can be difficult to see on a scan if it is small/ beginning stage. The CT confirmed that everything was okay and that all they could see was Cystic Fibrosis “damage” and no NEW damage. My saturations were 68% when we got there and therefore they had to put me on oxygen immediately (as well as the full trip in the ambulance). An overnight stay in the hospital was necessary. The doctor’s made sure I got a good night’s rest and that I was never off my oxygen for more than 5 minutes (bathroom break) at a time.

Day of Discharge + Machu Picchu

Early morning 06:00 I was discharged and we left with the ambulance that took us back to the train station at Ollyantanthambo that would take us to Machu Picchu. I was now on oxygen for the duration of our trip.

For a moment I sat still, took a bite of my sandwich and thanked God that I made it. I actually made it. It sounds so dramatic, but for a moment that night in hospital, I was afraid to fall asleep and not waking up again. The language barrier made me doubt my wellbeing and whether the doctors really knew what Cystic Fibrosis was. Only 70 000 people WORLDWIDE have CF, so it would be a miracle if someone knew about it.

They did, and for that I was so incredibly thankful.

The train trip was idyllic. Fourie, my dad and I were very tired after our little hospital expedition and couldn’t wait to take a nap. Fourie fell asleep almost instantaneously. I on the other hand was constantly just holding him close to me and really taking in the moment. Having someone that loves me for everything I am.

Death and Sickness are some of the worst things in life that one has to bear. It’s sometimes easier to be the one that actually deals with it every day, but it makes it impossible for my mind to imagine how it must be for those who love me. I admire my family and Fourie for always making CF seem important but not overwhelming in any situation. It is as if they know that at the end of the day I’ll be fine. They ALWAYS have hope.

Arriving in Machu Picchu Town

Our resort was bigger than Machu Picchu the town! It was massive and amazing. We went on an Orchid-Walk that was beyond beautiful. The garden and plants are extraordinary- they are luscious, big, green and beautiful. There are flowers and birds in abundance, making it feel like a real forest.

We spent the day relaxing, having high tea at the resort and ended our evening with a 5 star dinner and short brief for our Machu Picchu The Sanctuary visit the following morning.

Machu Picchu

This was probably the most emotional day of the whole trip. Everything led up to this day in my mind. The great photos we were going to take, the ticking of the box in my mind saying “I did it!” And the whole idea of knowing that “I, Carmen climbed all those steps to get to the top of the Machu Picchu platform.”

I guess something in me also kept thinking that I was not going to make it. The thought of it crossed my mind more than a hundred times, until I got to the top. It almost felt insignificant compared to what the view was when I got there. I instantly forgot about how I struggled to get to the top and stopped to take in the unimaginable surroundings!

Everyone listened attentively to our guide, Danny who was busy explaining all the rich historical facts about Machu Picchu. I on the other hand felt like I got lost in awe of God.

We spent about 6 and half hours in total exploring the site, having ice cream afterwards and taking our bus ride back to the resort. The night ended in a celebration of great food, friends and views.

Traveling back home

Why is it always that as soon as a holiday is over, we jump back into our busy lives, forgetting to take a breath and take in our immediate surroundings? I realized the day we landed back in Cape Town that we are SO fortunate to call this our home. We forget to appreciate the magnificent views we have every single day.

As I sat outside on our porch I took in a deep breath. It felt good to be off oxygen again and back in my own room and own bed, but not for long.

2 Days later I was admitted to hospital for Pneumonia and the common Rhinovirus (a cold) which can be fatal in CF patients if not treated with great care. I spent the next 2 weeks in hospital getting my body back in shape to do LIFE. A lavage was performed to ensure that we didn’t miss anything, since my lung function had decreased immensely on our return from Machu Picchu.

This is my life.

Some days, yes, I do wish that CF was not something I had to deal with every second of every day. But then: I realize that having CF is my story. My story of successes, of my fight, of my battles conquered… my blessing in disguise.

I wouldn’t wish this life-shortening disease on anyone, but I am SO glad that I was given CF to live a remarkable life. A life that is rich with love, happiness and hope.

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