The COPD Advocate Pulmonary Patients' Checklist
This paper was created at the suggestion of several correspondents on an Internet support group to which I belong. Some felt it would be helpful to have a system that would serve to remind them to schedule important tests or procedures; others, who are treated by several specialists concurrently, voiced concern of some details being overlooked, and; others felt that today’s doctors are so pressed for time they tend to skip over some routine matters of health maintenance. In each instance, these patients are anxious to take an active role in the management of their chronic diseases.
Successful management of chronic pulmonary disease requires the patient, doctor, therapist, and others in the support system to pay careful attention to a multitude of details. Some of the "professional" areas overlap and gaps in the coverage of these matters can occur. This paper is intended to assist the individual patient to organize and maintain essential information and (in cooperation with his or her doctors and therapists) to develop appropriate checklists and worksheets applicable to their needs, lifestyle, and objectives. It is hoped that the patient’s active role in the management of his or her disease will foster a atmosphere of mutual confidence and increased cooperation.
Suggested Organization of Your Data
Section One
Set up a loose-leaf notebook to hold: (Make multiple copies of pages in this section for use by your different doctors and of family members or other care-givers)
- all medications or other known substances to which you have allergic reactions;
- the names, addresses, and phone numbers of your doctors, therapists, pharmacists, hospitals, insurance companies (with policy numbers), and your next-of-kin;
- a page devoted to describing your medical history, in chronological sequence (including your use of tobacco, alcohol, or drugs);
- a page devoted to describing your present condition and symptoms or complaints (updated for every visit), and a brief statement of your goals and objectives;
- a complete list of your medications and dosages (prescription and over-the-counter), vitamins, and inoculations, and the prescribing doctor. If appropriate, and available, you might also want to include copies of your most-recent EKG, PFT, Spirometry, or similar tests/reports. (The pages above must be updated periodically to be of value.);
- copies of Powers of Attorney, "Living Wills," or organ donor data, if appropriate.
Section Two
- your personalized version of the Patient’s Tests and Procedures Checklist, as you and your doctor(s) agree is appropriate;
- a list of questions that have arisen since your last doctor’s visit/appointment;
- renewal dates for maintenance drugs purchased in quantity;
- notepaper for recording "special" short-term instructions of a doctor or therapist;
- doctors’ long-term instructions on such matters as diet, use or limitations of medications, or exercise, and;
- blank forms for recording daily and weekly data (your diary, so to speak).
Master Checklist of Medical Tests or Procedures
Consult with your doctors and therapists to decide which tests or procedures should be conducted periodically (as appropriate to your case) and the frequency, and file in Sect. 2:
- Blood pressure, pulse, temperature, weight, oxygen saturation, every three months
- Spirometry, every three months
- EKG, every six months
- Blood tests for sugar, Theophylline, digoxin, liver function, etc., every three months
- Bone density test, every six months
- Mammogram's, blood tests and stool samples for cancer markers, annually
- Flu shot, annually
- Pulmonary Function Test, every two or three years
- Pneumococcus vaccine, every five years
Master Checklist of Personal Activities
Decide which routine tasks, tests and exercises you should be performing, specify the frequencies, and record your performance on appropriate "diary" worksheets, kept in Sect. 2:
- Daily schedule of medications
- Measure Peak Flow, once or twice daily
- Practice pursed-lip breathing and diaphragmatic breathing, daily
- Perform prescribed physical exercises, three to five days per week
- Perform relaxation/stress reduction exercises, three to seven days per week
- Attend support group meetings as scheduled
- Telephone one or more fellow patients, daily
If each patient with chronic pulmonary disease takes an active role in the management of his or her disease, he or she can expect to achieve optimal results from medications and therapies; avoid the complications of secondary infections or the debilitating results of sedentary living. By working in partnership with your doctors and therapists, the goal should be nothing less than substantially increasing endurance and activity levels, leading a happy and productive life, and experience a significant decrease in hospital visits. In some circles, this is called "wellness."
You are encouraged to edit this document down to your needs, or expand it to include things peculiar to your case. It should be a convenient, workable tool.
Some correspondents have, while voicing support of this project,, expressed doubt of its efficacy in their situations, saying their doctors discouraged patient involvement, or were offended when questioned about a new treatment or medication, or angered because a second opinion or consultation was mentioned. A few reported the refusal of doctors to treat them because they were still addicted to nicotine. Please don't let these few rotten apples spoil the barrel. Most doctors will applaud your efforts and involvement.
This a "patient-point-of-view" paper written by a lay-person, and is not to be accepted as medical advice. In compiling this piece, the author received assistance and suggestions from a number of fellow patients (for which he is quite grateful), but retains sole responsibility for its content. Interested parties are encouraged to copy this article and to reprint and distribute it (with appropriate credit). Readers are also invited to submit comments, especially as they may offer improvement.
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