Chasing a Moving Target

It’s been a crazy summer. I spent most of it either getting sick, being in the hospital, or recovering. One thing that many people don’t understand about CF is that even after we come home from the hospital, or finish a course of medication, we’re not necessarily “all better”. The term “all better” is known as “Baseline”.

Baseline is the place where your “numbers” or symptoms go to when you’ve recovered from an acute (temporary) flare-up or episode.

What is Baseline?

For example, let’s say that you walk for an hour each day, averaging 4 miles an hour. You twist your ankle, and you can’t go on your regular walk for a few days. When you start getting back on your schedule, you might walk a bit slower, or not be able to walk for the usual hour. As your ankle heals, you eventually get back to where you were before the injury – walking 4 miles in an hour, every day. That would be your baseline.

CF lungs often take a while to get back to baseline after an infection – weeks and sometimes months, and sometimes we just never make it back. Doctors measure how much air we can suck in, how much and how fast we can blow out, the amount of Oxygen in our blood, our heart rate, Blood Pressure, and levels of inflammation based on certain blood tests. They also rely on clinical findings that aren’t necessarily measurable in numbers, such as an increase/decrease in cough, wheezing, mucus production, etc.

However, Baseline can sometimes seem like a moving target. Sometimes, we don’t make it “all the way back” and we have to accept new – lesser – states of health.

CF clinics now chart our lung function each visit, and gives each patient a printed chart indicating our lung function numbers from each test over the previous few years and of that day’s testing, which helps us see how much further we need to go. My doctors have always been aggressive in chasing the highest possible numbers for my lungs. As unpredictable as CF seems, we patients do have a certain level of control over our health. It’s essential to do the prescribed treatments and regimens, based on research and lots of anecdotal evidence.

Realize that not every patient responds well to every treatment out there, so I am not saying that we need to blindly follow doctors’ orders. We do, however, need to figure out what works for us, and then do what works.

And then keep doing it.

CF is an uphill battle. Find out what helps lighten your load.


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