The Pulmonary Fibrosis Foundation (www.pulmonaryfibrosis.org) has an Inter net Patient Support Community called Inspire. It is a great place where people can share helpful tips and their concerns at www.inspire.com.
Among the postings:
- tillI lsove to cook and having just gone through the holidays, I thought I would share a few I have a couple of office chairs placed in my kitchen, along with a little low table so I can sit when I’m prepping meals. The chairs let me zoom around from one side of the kitchen to the other, chop and dice at my preferred height, and get into cupboards and the dishwasher while conserving my energy.
- t cIan be a nightmare chopping onions with my cannula on. I wear a pair of silly glasses and other than trying not to giggle, have not had a problem since!
- Atord who specializes in pulmonary fibrosis recommended this web site (www.pilotforipf.org), it is geared toward healthcare professionals, but I know there are many of us who seek out more information and knowledge about our disease. There are webinars you can watch and a lot of information in the FAQ section. I signed up to stayup to date by selecting “Other” as the Health Care Provider Type, “1” as the total number of Current IPF Patients, and “Other” when they ask my Practice Setting.
- llAapmong the group who has tried the new medications, ESBRIET (pirfenidone) and OFEV (nintedanib), reveals the majority of people who have tried these report some nausea and loose bowel movements when first started. The dosage is reduced while they get used to the drug and most are able to go back to the recommended dosage.
- eoPple who are looking to participate in clinical trials for potential treatments for IPF should go to www.clinicaltrials. gov. Search for interstitial pulmonary fibrosis or IPF and enter the state in which you reside in the search box. Select “include only open studies” to receive a list of those that are actively recruiting people. Then click on a study title and scroll down until you see “Contacts and Locations” for a list of study locations and contact informa tion.
Exercise and IPF Talk
Listen to Dr. Noah Greenspan’s talk from the Weill Cornell Living Center on IPF Patient Education Day where he discusses exercising with IPF (idiopathic pulmonary fibrosis).
Go to at www.youtube.com/watch?v= ncDB9gQ9g_k
The recent edition of the Journal of CardioPulmonary Rehabilitation and Prevention reports on CardioRespiratory Function before and after Aerobic Exercise Training in Patients with Interstitial Lung Disease. The training lasted for ten weeks and consisted of treadmill walking for 30 to 45 minutes, three times a week. Significant clinical improvements were found after training relating to more efficient oxygen uptake by the muscles of the participants. It has long been believed that a muscle that is toned and in shape, takes less oxygen to move than one that is not.
have found that specific types of white blood cells (leukocytes) might be used to predict the disease progression of IPF. The study appeared in the December 22 issue of Frontiers in Medicine.
Leukocytes are found throughout the body and play an important role in the immune system by protecting the body against outside invaders, such as infections. All leukocytes are born in the bone marrow, and then turn into one of five different types of cells based on the molecules they contact. Their physical appearance and their func tion distinguishes them from one another.
The investigators found several subtypes of leukocyte that, when measured at the binegionfnthe study, predicted later more severe IPF outcomes. Specifically, leukocytes in an “inflammatory” or activated state pre dicted poorer outcomes.
Although these markers could indicate progression, and may point toward immune therapies for treating IPF, the scientists cautioned that more research is needed before being able to measure these markers to predict progression of the disease in an individual.
The Mayo clinic describes interstitial lung disease as a large group of disor ders, most of which cause progressive scarring of lung tissue. The scarring associated with interstitial lung dis ease eventually affects your ability to breathe and get enough oxygen into your bloodstream. Different types include
- diIopathic and Familial Pulmonary Fibrosis
- Hypersensitivity Pneumonitis
- Bronchiolitis Obliterans
- Lymphangioleiomyomatosis onCnective tissue or autoimmune ldaitsedasPeurlme onary Fibrosis