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KCFPF

Health Management

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Doctor Using Digital Tablet

Once your are diagnosed with Pulmonary Fibrosis you should increase your monitoring and management of your health and care.

You will need to start monitoring blood oxygen levels. Using a Pulse oximeter will will help with this monitoring. There are various opinions on what level of O2 saturation you should maintain. Discuss with your doctor on what levels they recommend.  Raremark has an article on Pulse Oximetry.

Here is an article about "Tracking Your Pulse Oximetry Readings"
Apr 17, 2021 PFF Blog | Jessica Shore, PhD, RN, 

Periodically, your doctor will have you take a Pulmonary Function Test (PFT) which consist of Spirometry, Lung volume measurement, and Diffusing capacity (DLCO) tests.

  • For Spirometry, the forced vital capacity (FVC) is the main result.

  • For the Lung volume measurement, total lung capacity (TLC) is the primary result.

  • For Diffusing capacity, one of the tracked results is DLCOunc.

 

These above results will be have a measured value, predicted value, and a percentage.  Percentage is the main value monitored unless you get PFT test at multiple locations.  Due to different parameters configured at each location, comparing percentage results could be miss leading. Therefore monitoring the measured value is better.  Example is doing a test at North Kansas City Hospital and at Kansas University Medical Center, the predicated value will be different. 

    Recommend you get a printed copy of the PFT from the technician for your records. You could place the results in a spreadsheet to give you a quick review and be able to see any trends. Example Spreadsheet

    Monitoring these results can help determine the informal stages of Pulmonary Fibrosis.

Continue seeing your doctors regularly.  If you can't to go into the clinic, the doctors are doing telemedicine appointments. Here is a PFF Telemedicine 101 presentation by Dr. Mark Hamlin and RN Jamie Ludwig. Nonin corporation's blog posted this article "Even During a Pandemic, Kansas City Pulmonary Fibrosis Foundation is Finding a Way to Empower Patients".  They interviewed Dr. Mark Hamblin and Dale Brommerich, Patient Advocate about the importance of using a Pulse Oximeter and a Spirometer. The foundation provided Pulse Oximeters and Spirometers to area pulmonologists (see Initiatives) to help with Telemedicine. Doctors are looking at methods of doing Spirometry testing at home. Here is a PFF article on Spirometry at home

Doing Exercise has always been an important part of maintaining your health. With Pulmonary Fibrosis exercise is extremely important to do. 

  • Develop an exercise program that meets your situation and what equipment you have available. Probably at some point in time your doctor with prescription Pulmonary Rehabilitation for you. When you leave Pulmonary Rehab, use their program as a basis for your exercise program. Your  Pulmonary Rehab Clinic might provide a maintenance program.

  • Lung Transplant centers recommend doing 30 minutes on a treadmill 5-7 times a week.  It does not matter how fast or slow you go.  

  • Suggest doing some lower and upper body exercises. Eldergym website is a good reference for exercises, and balance.

The Pulmonary Fibrosis Foundation has a good reference for managing your health. "Maintaining your Health".  This article goes into more detail on managing your lifestyle and questions to ask your health care providers.

Treadmill Walking