For my husband, he was diagnosed just a little over a year ago and during this time last year, he was able to rake the leaves on the lawn and was still embarrassed about using his oxygen in stores or public places. He was on 2 liters of oxygen back then.
At that time, he was the first one up in the morning to bring me my coffee and throughout the day created his own schedule of getting cleaned up for the day as well as helping out with dishes or watering plants on the balcony.
As time progressed and we received more assistance from in-home care, he no longer prepared his breakfast or lunch as to reserve his energy. He also took physical therapy and learned exercises in order to retain his lung function.
Slowly, the level of oxygen he needed increased. He would sleep on 4 liters and go up to five, while awake.
Then, about a month ago his SAT's seemed a bit lower and we had to go to 8 liters during the day and 6 at night. Pretty soon, anything that had to do with movement took great effort from him. Such as washing his own hair. So, I pitched in to help him with this.
About two weeks ago, he needed a bit of assistance getting to the bathroom. Someone to hold his arm as he walked there.
As of last week, at 100 pounds, my husband was carried to the bathroom for his last "real" bath and since then, he cannot leave the bed.
What is it like to be in end stage Pulmonary Fibrosis?
At this time, he is on 12 liters of oxygen at rest. Things like sitting up or moving his arms cause his SAT's to drop down into the 50's. It takes additional oxygen through the mouth to get them to slowly climb back up. He no longer craves big, juicy steaks and now sticks with small portions of nourishment that are bland and easy to digest. Eating also causes his oxygen to drop. Water or Pedialite must be dropped into his mouth with a straw as sometimes, he cannot hold the cup. He is given Morphine, orally, to help with the oxygen craving. This helps him to sleep and forget that he has to work so hard to breath. This will become our primary course of action to assist him as he progresses even further.
We have a schedule. Periods in-between his personal care and rest, when he enjoys spending time with family. He is all there, mentally. He responds well and knows exactly what is going on although he does forget which day of the week it is. When I squeeze his hand three times for... I Love You.... He always squeezes back three times. Even when he is asleep.
Every morning when he awakes he is always thankful for another day, which amazes me...his desire to live.
For us, that is what it is like to be in end-stage Pulmonary Fibrosis.