I have been on this site for a few years and I very rarely post largely due to the fact that when I have I feel that I become attacked due to the opinion I have. I have a medical back ground as I was a registered nurse prior to being diagnosed with IPF. I worked in a nursing home with the elderly many of whom had respiratory diagnosis of COPD and a few with IPF. One can have obstructive (COPD), retrictive (IPF), or a combination of the two. I was diagnosed with primary IPF in the form of UIP, and secondary COPD in the form of DIP, so I have combination with IPF far more prominent. The advice I was given was this: "Don't become dependent on; antibiotics, inhalers, steriods, or oxygen. Don't allow yourself to be treated as a patient with COPD". I read all the information I could find on my primary diagnosis and I then understood why the doctor that diagnosed me gave me 3 to 5 years to live, because the only treatment is a lung transplant which I would never consider because it can give you a couple more years or you could reject the lungs and die anyway. Also people diagnosed with IPF in the younger years of their life tend to have a more progressive form of the disease. A certainty in all lung disease is that it is terminal whether it be from heart failure or respiratory failure. From experience as a nurse I can definitively say what treatment works for one patient will not necessarily work for another. I have chosen to be very firm in my treatment since my diagnosis I research every medication my doctor wants me to try in regards to my lung disease and I take into consideration all medication and how they affect my lung function. I exercise my lungs daily with my incentive spirometer, I have a pulse oximeter that I used to learn how to pace myself when I walk to keep my oxygen saturation above 93%, and I keep my tachycardia under control. I was prescribed oxygen in 2014 to be used during activity like household chores, showering, walking, well basically any thing where I exert myself. I primarily use it when I shop with my daughter and have used it when I came down with pneumonia. As soon as the medication kicked in I stopped using it.
I have other diagnoses as well fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, psoriasis, chronic pain mainly thoracic region, several herniated disc through out my cervical and thoracic spine, anxiety, depression, and tachycardia. I came on this site to find people of like minds, to read their stories, to learn what I could from other people, to give what knowledge I have from my experience, to sympathize and empathize with those suffering from lung disease, and to remind people you are your best advocate when it comes to your health.
Since my diagnosis in 2010 I have had bronchitis twice and pneumonia once, and was antibiotics twice once for the pneumonia and once for diverticulitis. During flu season I wear a mask for my protection in public places. When I get sick and its with my lungs I have it verified by chest xray and by white blood cell count. I don't want to take antibiotics unnecessarily. I have an albuterol inhaler I have used minimally on days when I become very wheezy. I'm beating the odds I feel because my symptoms began two years before my diagnosis so to me every day is a gift...my doctors have learned that with me they can't gloss over information that I will research. I will read all the information on a drug prescribed, I will ask the hard questions of them.
We are each uniquely different what works for one won't necessarily work for someone else, everyone has their own path to follow, but sharing ones knowledge may help just one person then everyone who can should. Knowledge about your diseases and how each of them affect the other is the best way to ensure you are in control of your disease and can be your best own advocate. Wishing only the best to everyone...