"What brings you here today?"
"How have you been doing since I last saw you here in the office?"
When your doctor or healthcare provider asks you these questions, do you know what to say? Or, more importantly, do you know how to answer so he or she has the information needed to give you the right diagnosis and treatment?
Here are two fictional patients, Agnes and Bill, as they face their docs and answer these questions.
Agnes: Well, I don't know"I think my breathing is worse, but I'm not sure" I have good days and bad days"I cough sometimes - it's terrible - and I can't stop, but then I seem to get over it. A lot of the time I'm clogged up and my breathing feels tight. I even have to sleep in the chair sometimes. I can't do what I used to do.
Bill: Well, my oxygen sats are about two points lower now when I walk on the treadmill than they were a year ago. My cough is about the same - I cough mostly first thing in the morning and bring up clear mucous about the size of a quarter, and once I'm done with that, I breathe better. About a month ago I had to sleep in the chair for a couple nights, but I increased my rescue inhaler to four times a day for a few days - like you said I could - and now I can sleep in bed again with no problem.
Between Agnes and Bill, who do you think is going to have a more productive office visit? Which one of these patients is providing, in an efficient way, more solid information to the doctor, allowing more time for a meaningful discussion and the development of an effective treatment plan? If you guessed it is Bill, you're right. How does he do it? Bill has a medical notebook.
What is a medical notebook?
A medical notebook is a means of organizing your medical information in one place, and keeping track, daily, of changes and the stability of your health. It can help you manage your disease, provide vital, up-to-date information to your healthcare provider, and get the most out of your medical appointments. There are many ways to make a medical notebook work for you. All you need to start is an inexpensive loose-leaf folder with pockets and a spiral tablet, at least 5x7 inches in size.
Here are some suggestions of what to keep track of each day. You don't have to do all of them - just those that are issues for you, or that interest you. Check with your healthcare provider for recommendations.
Day and date
How you are feeling today (tired, energetic, happy, sad, easy breathing, difficult breathing, etc.)?
Do you have:
Mucous - color, viscosity (thick, thin, sticky), and amount (think in terms of the size of coins or measuring spoons)?
Triggers? (things that send you into difficulty breathing, such as strong odors, dust, allergens etc.)
Medications you've taken - Routine meds, but especially rescue meds, via inhaler or nebulizer
Your number on the Borg Scale for Dyspnea (see below)
Peak flow, if appropriate
Make sure to log these vital signs at the same time each day, at the same level of exertion. See Is That Good? Understanding Vital Signs for information on observing vital signs.
Do weight or resistance training?
Do you have a good / bad
If you have chronic pain, use a pain scale recommended by your doctor
In another section of the tablet:
Write down questions you have about your breathing and your overall health
If you get the answer to a question before your next appointment - great Just cross it off the list!
In the pocket folder you can keep:
- Notes and instructions from your last appointment
- List of the medications you're currently using - names, doses and what they do to help
- Results of medical tests or health screens, especially those you've had done at places other than your doctor's office or hospital
- Advertisements, brochures, or materials that relate to your disease - things to show your doctor if you have questions about them. Do not present your health care professional with more than one or two materials at each appointment! He or she does not have time to go through this.
The Borg Scale
In COPD, shortness of breath is a fact of life. You can use the Borg Scale for Dyspnea (shortness of breath) is used to measure your sensation of breathlessness.
You decide what number to assign to your shortness of breath with any given activity. Doing this can provide important information and help you note changes so you can report them to your healthcare provider. For example, if an activity that made you very slightly breathless (#1) a month ago now makes you moderately breathless (#3), it should be reported. Make sure the times, activities and conditions you're keeping track of are consistent day by day.
No Breathlessness At All
Very Very Slight (Just Noticeable)
Very Severe Breathlessness
Very Very Severe (Almost Maximum)
Borg, Gunnar. Borg's Perceived Exertion and Pain Scales. Human Kinetics, Champaign, IL. 1998
I hope this helps you understand the importance of keeping a medical notebook. Give it a try, and work in partnership with your healthcare professional as an informed and empowered patient!
Jane M. Martin is a licensed respiratory therapist, teacher, founder and director of http://www.Breathingbetterlivingwell.com and author of Breathe Better, Live in Wellness and Live Your Life With COPD-52 Weeks of Health, Happiness and Hope.