Due to the very recent passing of a family member that suffered from this illness, I thought it was worth sharing this information. Right now there is still much that doctors and researchers don’t know about Idiopathic Pulmonary Fibrosis. No known cause, no known cure. The fact that the symptoms mimic other pulmonary issues means it takes longer to diagnose while the trial/error process has to take place to eliminate what it’s not.
Meanwhile, the person suffering is slowly losing the ability to breathe on their own. What starts off as losing their breath while walking and doing normal activities that are not strenuous. Needing to take frequent breaks to sit and catch their breath, their breathing becomes more labored because their lungs are slowly losing their capacity (loss of volume over time). Walking from one room to the next becomes a chore. The use of carrying around an oxygen tank becomes the new normal and make sure you carry extra tanks when you are driving around. Portable tanks of oxygen evolve to large home units with 100 feet of hose to ensure that you can walk about your home.
You end up on 13 pills a day to help you, to counteract the side effects from other pills you have to take, to prevent you from getting diabetes, to thin your blood/skin, to ease the discomfort. To control the coughing that comes along with this illness taken along with a codeine/morphine cough syrup. You gain a ton of weight in the first 6 months, due to the pills, then you lose a ton of weight during the last 6 months, due to lack of appetite and probably the pills. You may be eligible to undergo routine infusions. Once the weight falls off, the muscles atrophy, you are too weak to walk around, standing causes you to feel faint, and you are barely mobile on your own. Hospice care is the best option at this point unless you have family or a personal support worker that can assist in your daily needs.
To anyone reading this that has a family member going through this or is currently suffering from Idiopathic Pulmonary Fibrosis, I am truly sorry. I know that it is not easy to witness a loved one slowly getting worse as their need for oxygen increases. Hopefully, there will be some new developments in the future.