The difference one year can make

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This time last year I only just managed to return home from overseas when I became very unwell. I was very close to being hospitalised in Vietnam, not surprisingly I did everything I could to avoid this option.

It all started when I was travelling on my own in Laos and Vietnam. I was volunteering in Laos, teaching english to children, when I got a very bad chest infection. I had never coughed up more sputum before! There was a lot of smoke in the restaurants and pubs, plus amazing amounts of dust on long bus trips. The result was a pretty bad chest infection. I started cipro but there was only so much this could do.

I was not going to let this stop me from continuing my holiday, so I continued my holiday to Vietnam where I started a tour. Over the two days where I transferred from Laos to Hanoi to Saigon, everything seemed to go wrong. I decided to climb a mountain (called a mountain but really a big hill) on the first day and I lost a lot of salt, whilst I had plenty to drink there was then nothing to drink in the airport waiting area in Laos. I then had all my money stolen by my taxi driver in Hanoi, but luckily I still had all my luggage and medications. My hotel in Hanoi was in the middle of nowhere, but I managed to find some rice and some drinks, nothing more. The next day the ATMs were not working in the airport in Hanoi, so I could not get any money out for drinks when I was very thirsty. I then arrived in Saigon, by now I was dehydrated and had very little food over the last two days. I started to feel quite sick, nauseated, dizzy, and could not eat. I would put a small amount of food in my mouth and swallow it with water, this was the only way to avoid the gag reflex. I was tired, but I could not sleep. I remember being worried that if I did sleep I might not wake up, thats how bad I felt.

I thought this was a combination of my chest infection and dehydration, but I knew I had to go home or I would be in a hospital. I changed my flights and then started on what felt like an extremely long journey. Each plane flight was so difficult, I would get up every 15-20min and walk around as this made me feel less sick & nauseous. I kept counting down every 15min on the clock, and I thought I never wanted to be on a plane ever again. I was very happy when we crossed the coast in northern australia, I knew if something happened to me on the plane that at least I would get to an australian hospital.

I made it back to Adelaide, and went straight to hospital. They did many tests, and discovered my creatinine was 460. Mine is normally around 60 and in a healthy person it is between 50-100. My kidney function was at about 5%. They told me at first it must be an error, they could not believe it was that high. But it was right, and I was in acute renal failure.

My FEV1 had dropped into the 40s for the first time. I spent the next 3 weeks in hospital, gradually my health improved as they gave me fluids and inhaled TOB (no IV tob allowed due to my kidneys). After 3 weeks the creatinine was back to 80. The doctors believed the combination of my dehydration, salt loss and lack of food plus a reaction to pantoprazole was the likely cause of the kidney failure.

I was not allowed to take pantoprazole after this, or take any similar PPIs. This contributed to an increase in reflux and my poor health this year.

If I look at where I am now compared to last year, the difference is astonishing. I am now at 71%, my highest FEV1 in 2.5 years, 5kg heavier, and have a sweat test of 54, which is below the point commonly associated with the diagnosis of CF. For the first time in my life my CFTR channels are working to 50% of normal levels. In biological terms I am returning to homeostasis, with less chronic infection and more stability. Homeostasis means my cell & organ function is sustainable, instead of the decline associated with CF.

A year ago I could not have possibly imagined that I would be this healthy now. For the first time in my life I am looking forward to seeing how my health goes over the next year.

Lets hope my China trip is less eventful than my trip last december 🙂

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One thought on “The difference one year can make

    SnapInTime said:
    December 15, 2012 at 7:58 pm

    All I can say is: WOW, and what a strong woman you are! I am so glad you made it safely home from your last trip and had the strength to get so much of your health back. After that account, I am convinced you had the strength and merely accomplished it with a bit of help on the side from your CF team. 😉 Indeed, what a difference a year makes. China should be amazingly different, a real landmark for you!

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