A common question that I am frequently asked when people find out that I have CF is, ‘what is it like?’ Which is reasonable. For one thing, it usually involves treatments, generally 4 treatments a day is what the doctor would like. However, with life, work and all, it usually consists of 2, if I wake up really early in the morning and then one later on in the evening before bedtime. For each treatment, it consists of a breathing treatment called a nebulizer and vest machine.
A nebulizer is a machine where liquid medications are placed in a smoking pipe like object and smoke away. For this, I use two medications, Albuterol and Mucomyst. Each medication has its purposes, albuterol is used to open up the lung airways. Mucomyst is used to thin out the mucus in the lungs so that it can clear out easier. Recently I have been prescribed an antibiotic called Tobramyacin for my nebulizer. So now I should be doing three nebs per treatment. However, with the Tobramyacin being an antibiotic, there’s a special schedule that needs to be kept. Having one month on and one month off, so that the bacteria in the lungs do not become resistant. As with many other antibiotics, the body should only have a certain amount of it at a time.
A vest machine is quite interesting in itself. It has a machine with two slots were plastic tubes are inserted into it, with the other ends connecting to a plastic like vest that I wear. The machine has three different knobs, one for frequency, pressure control, and a timer. Generally there’s a sequence of frequencies that the doctor gives you and that’s what you stay with. For me, it’s 8,9,10, 15,16, and 17; the pressure usually set at about 15, and five minutes each setting. So in all, my treatment usually lasts about 30 minutes each. How the vest works is you put on the vest, hook the tubes up, set your settings, and then there’s a little black pressure pad that you put wait on and it starts shaking. The purpose of this is to shake loose the mucus in the lungs so that it doesn’t just sit in one place. Allowing the mucus to sit in one place in the lung for too lung is a bad thing because it gives bacteria a chance to sit and grow there. By using the vest, you are forcing the mucus to get loose and then bring it out.
With the breathing treatment along with the vest, it is a key component in trying to keep as healthy as possible. As one of my doctors told me, CF may not be curable, however it is treatable. And these two combinations are the most important, next to eating healthy and regular cardiovascular exercise.
One would think, so 30 minutes each treatment, 2 treatments a day, that can’t be too bad. It doesn’t sound too bad, actually it sounds very doable. But when you throw in in work and life, you realize that sometimes, the treatments are more of a burden then a relief. The only time that I’ve been able to actually do 4 treatments a day was when I was hospitalized. At that point, you don’t have any other obligations then getting yourself better. Plus, you’re stuck at the hospital, there’s no excuse!