Symptoms of a CF exacerbation may vary from one person to the next; however, many of the symptoms are similar in pediatric and adult patients with CF. In this blog entry I am listing a few devices to help monitor symptoms at home as well as symptoms of an exacerbation. Remember, not all patients will experience all symptoms listed during an exacerbation.
Recommendations for At-home Monitoring of Symptoms
1. PiKo-1 Electronic Peak Flow & FEV1 Meter will help you keep track of your lung function at home. My CF center uses this meter in CF patients so that we can monitor our lung function regularly in an effort to detect an exacerbation or drop in lung function before CF clinic and before we become symptomatic. My CF center also gave me a printout containing my FEV1 References, which give me the FEV1 value in liters and the percent predicted FEV1. I also like that the PiKo device gives a digital report of FEV1, FEV6, and FEV1/FEV6 which are all important in monitoring lung function. This is a portable, easy-to-use, and affordable device if your center cannot provide you with one. This data in PiKo-1 can be downloaded by you or your doctor's office so that they can also keep track of your lung function. Please note I do not recommend using this device during episodes of hemoptysis. You can purchase this device on several websites, including Amazon-PiKo-1 Peak Flow Meter. There are other versions of this device, including a PiKo-6 which is the model I have. Lastly, ensure that your at-home PFT device is consistent with the PFT machine at your CF center for best accuracy.
2. Fingertip Pulse Oximeter is another great device to have at home. This device will measure your blood oxygen sats as well as pulse rate, which may change during an exacerbation. Typically when I begin to experience an exacerbation I notice my heart rate goes up over a few days and my 02 sats decrease. I have checked my Pulse Ox with the one at my CF clinic and the numbers are consistently the same.
3. Blood Pressure Monitor is also a useful device to monitor symptoms of a CF exacerbation and baseline symptoms at home. Some patients with CF experience a drop in blood pressure during an exacerbation whereas others experience an increase in blood pressure. My blood pressure typically increases during an exacerbation, which is why it is important for me to monitor my blood pressure closely.
4. A Thermometer is very useful in determining a change in temperature which is typically indicative of an exacerbation or acute infection. Sometimes a person with CF may have symptoms of a low grade fever, but not know he or she is actually running a temperature. Monitoring your temperature daily is useful to keep an eye on any sudden changes that may occur before a fever spikes. For example, I began running a chronic low grade fever in August 2009 and it was not until I purchased a thermometer that I realized all the symptoms I was experiencing were actually caused by a low grade fever.
The aforementioned devices can be used to detect an exacerbation early. Each morning I wake up I check my temperature, blood pressure, oxygen sats and pulse rate. This allows me to keep a record of how well my body is or is not functioning. so that once Additionally, I use my PiKo-6 device twice weekly (I skip my PiKo-6 during episodes of hemoptysis and for at least 24 hours after hemoptysis), and call my doctor if I experience a significant decrease in lung function. Monitoring lung function, oxygen sats, pulse, temperature, and blood pressure are ways I measure my body's status. Just as important as my stats are acute symptoms that I may be experiencing, which are also key indicators of a CF exacerbation.
Symptoms of a CF exacerbation:
1. Fever
2. Dyspnea (Shortness of Breath)
3. Hemoptysis (Coughing Up Blood)
4. Wheezing (Whistling Sounds Occuring During Breathing)
5. Increased Cough and increased sputum
6. Increased Pulse Rate
7. Increased Respiratory Rate (Breaths Per Minute)
8. Decreased Lung Function
9. Sore Throat
10. Sinus Pain, drainage, or tenderness
11. Fatigue, malaise, or lethargy
12. Decreased appetite and/or weight loss
13. Shortness of breath
14. Color change in baseline sputum
15. New or increased Cyanosis (Bluish Color of Skin)
16. Change in complexion (paler than usual, bluish tint to skin)
17. Increased White Blood Cell Count (WBC)
18. Napping or needing to sleep longer hours than usual
19. Nausea
20. Chest Pain (Pressure-like pain, sharp pain when inhaling or exhaling)
21. Back Pain (lung pain can feel as though it is originating in the back)
22. Irritability
23. Difficulty sleeping
24. Worsening reflux
25. Changes in radiographic reports (Chest x-ray or CT scan)
26. Change in smell or viscosity of sputum
27. Increase in blood glucose or difficulty controlling blood glucose
28. Night sweats
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