Benat (13): my daily routine living with . . . Cystic Fibrosis

Nebulisers, inhalers, insulin shots, sugar levels – a typical day for one Dublin boy

Benat Potokci, from Sandyford, Dublin.

Benat Potokci, from Sandyford, Dublin.

 

When I wake up every morning, I go downstairs and start by having my nebuliser. You might be wondering what exactly a nebuliser is. A nebuliser is a drug delivery device used to administer medication in the form of a mist which is inhaled into my lungs.

Before I start my nebuliser, I take two puffs of a Ventolin inhaler which helps to open up my lungs through a Volumatic. A Volumatic is a large volume space device which helps me to get the most from my inhaler.

When I finish my Ventolin inhaler, I start with my Hypertonic Saline, which I take through my nebuliser. The salt attracts water into the airways, which helps to thin the mucus, which makes it easier to cough out.

Benat Potokci.
Benat Potokci.

Once I finish my Hypertonic Saline I do my Pep (physiotherapy) followed by six huffs. I do five sets of 10. I put my mouthpiece Pep in my mouth then I take a big breath hold it for about 2-3 seconds, then I breathe out against a hard resistance for about 5-6 seconds.

This helps air to get behind the mucus and helps it to move it from the lungs and airway walls. Once I finish every set, I do six huffs with a piece of tissue which helps to move the mucus from my lungs.

I then take another nebuliser which is called Colobreathe. I have Pseudomonas (which is a persistent lung infection). The Colobreathe prevents my Pseudomonas from getting any worse.

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Once I am finished all of that (which takes about 30 minutes of just sitting there), I then have to check my blood sugars and inject myself with insulin.

I have Cystic Fibrosis Related Diabetes, CFRD for short.

I must inject myself with Insulin twice a day before break and before my evening meal.

I have to check my blood sugars four times a day.

Thankfully, I recently I got a new device called The Freestyle Libre System. Instead of having to prick my finger, I put a sensor on to the back of my upper arm which stays for two weeks. This is amazing technology, as the only thing I have to do is hold the hand-held monitor against the sensor and it will give me my most current blood sugar reading. This is all pain free which makes it easier for me.

One I’m finished everything, I then have my breakfast and take my medication, which consists of vitamins, antibiotics and the new and amazing drug, Orkambi. Once I’m finished everything I then get ready to go to school.

When I come home from school I check my blood sugar and inject myself with insulin. Once I’ve completed them, I must wait 15 minutes and I then can eat my dinner.

I have another nebuliser called Pulmozyme. Pulmozyme helps to break down the mucus and makes it easier for me to cough up.

Once I finish my nebuliser, I then start my homework. After that, I eat some more food, followed by another blood sugar test and then I have my night-time nebulisers, which are the exactly the same nebulisers I took in the morning.

I then finish my night by taking my medication and go to bed.

- Benat (blog)

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