Tell me your experiences with pulmonary fibrosis

Long Term Care Columnist / Guide · Aug 18, 2011

The first patient I ever took care of with this disease was a 53-year-old woman who was dying from it in the nursing home where I worked as a new RN. I remember giving her a lot of Tessalon Perles when she had her coughing spells, then later we alternated those with Phenergan w/ codeine, and in the end it was just sublingual morphine. Of course, this was almost 15 years ago and she was end-stage, so the treatments have probably changed some and I would imagine a lot depends on how far advanced the disease is.

Wow.....it just occurred to me as I was typing this that I'm almost 53 now myself, and I can't even imagine lying in a nursing-home bed and knowing my life is all but over. I remember the courage my patient showed in her last days, remaining alert and in control despite the anxiety I know she felt during the times when the cough racked her frail body. She was a woman of faith who believed with every fiber of her being that her suffering had a purpose and that Jesus was coming to take her home, and she fought through each day with her eyes turned to Heaven as her ultimate destination.

Toward the end, she began to have episodes when she was unable to catch her breath even with oxygen and breathing treatments; and even the morphine wasn't doing much for her at the last.

The night she passed---it was a hot August night, much like this one---there were more than a dozen people standing around the bed, holding hands and praying while Elton John's "Can You Feel The Love Tonight" was playing on a radio somewhere down the hall.......Yes, the love in that room was almost palpable; and one of the greatest honors of my nursing career was being invited to join the circle of family and friends to watch and pray over my patient as she finally let go of life.

That's my experience with pulmonary fibrosis......that, and being warned by my doctor a few years ago that I could wind up with it if I kept allowing my asthma to flare out of control. I've also had other patients with it, but they were either in an earlier stage or they died of something else.

Vtachy1 · Aug 18, 2011

The first patient I ever took care of with this disease was a 53-year-old woman who was dying from it in the nursing home where I worked as a new RN. I remember giving her a lot of Tessalon Perles when she had her coughing spells, then later we alternated those with Phenergan w/ codeine, and in the end it was just sublingual morphine. Of course, this was almost 15 years ago and she was end-stage, so the treatments have probably changed some and I would imagine a lot depends on how far advanced the disease is.
Wow.....it just occurred to me as I was typing this that I'm almost 53 now myself, and I can't even imagine lying in a nursing-home bed and knowing my life is all but over. I remember the courage my patient showed in her last days, remaining alert and in control despite the anxiety I know she felt during the times when the cough racked her frail body. She was a woman of faith who believed with every fiber of her being that her suffering had a purpose and that Jesus was coming to take her home, and she fought through each day with her eyes turned to Heaven as her ultimate destination.
Toward the end, she began to have episodes when she was unable to catch her breath even with oxygen and breathing treatments; and even the morphine wasn't doing much for her at the last.
The night she passed---it was a hot August night, much like this one---there were more than a dozen people standing around the bed, holding hands and praying while Elton John's "Can You Feel The Love Tonight" was playing on a radio somewhere down the hall.......Yes, the love in that room was almost palpable; and one of the greatest honors of my nursing career was being invited to join the circle of family and friends to watch and pray over my patient as she finally let go of life.
That's my experience with pulmonary fibrosis......that, and being warned by my doctor a few years ago that I could wind up with it if I kept allowing my asthma to flare out of control. I've also had other patients with it, but they were either in an earlier stage or they died of something else.

Wow thank you so much for sharing all that! 15 years ago, it must have made an impression. Thank bunches.

tewdles, RN · Aug 18, 2011

I find that pulmonary fibrosis patients often have a rapid rate of decline from dx to death. They need LOTs of help with palliating symptoms. Fear, anxiety, depression, and control are often troublesome as well.

Use whatever meds help them...damn the protocols...discover what works and advocate for that. Many of the end stage patients benefit from either BiPap or CPap but not all hospices will pay for that. Advocate, advocate, advocate.

czyja, MSN, RN · Oct 9, 2011

Horrid disease. I have seen it several times in the ICU in pts awaiting transplant. Sadly, most did not survive long enough to get a lung.

Tewdles speaks with wisdon on this this issue, as she does on other matters. I would emphasize that the the profound dyspnea which invariably accompanies this dz often has an anxious emotional component. Morphine often works well to relieve the physical sensation of dyspnea but it is often less effective in palliating the anxiety that accompanies dyspnea. Benzos can be helpful here. As can a small fan moving air across the face. Reassurance, music, guided relaxation also have a place.

I think the important thing is to assess for dyspnea and anxiety. Then, as Tewdles notes, advocate and ensure that these are palliated as effectively as possible.

allnurses Guide · Apr 27, 2013

We do lung transplant for pulmonary fibrosis - depending on age, make sure that the patient gets a referral to a transplant center of excellence if they are interested in being evaluated for transplantation.

SweetMelissaRN · Apr 28, 2013

The first patient I ever took care of with this disease was a 53-year-old woman who was dying from it in the nursing home where I worked as a new RN. I remember giving her a lot of Tessalon Perles when she had her coughing spells, then later we alternated those with Phenergan w/ codeine, and in the end it was just sublingual morphine. Of course, this was almost 15 years ago and she was end-stage, so the treatments have probably changed some and I would imagine a lot depends on how far advanced the disease is.
Wow.....it just occurred to me as I was typing this that I'm almost 53 now myself, and I can't even imagine lying in a nursing-home bed and knowing my life is all but over. I remember the courage my patient showed in her last days, remaining alert and in control despite the anxiety I know she felt during the times when the cough racked her frail body. She was a woman of faith who believed with every fiber of her being that her suffering had a purpose and that Jesus was coming to take her home, and she fought through each day with her eyes turned to Heaven as her ultimate destination.
Toward the end, she began to have episodes when she was unable to catch her breath even with oxygen and breathing treatments; and even the morphine wasn't doing much for her at the last.
The night she passed---it was a hot August night, much like this one---there were more than a dozen people standing around the bed, holding hands and praying while Elton John's "Can You Feel The Love Tonight" was playing on a radio somewhere down the hall.......Yes, the love in that room was almost palpable; and one of the greatest honors of my nursing career was being invited to join the circle of family and friends to watch and pray over my patient as she finally let go of life.
That's my experience with pulmonary fibrosis......that, and being warned by my doctor a few years ago that I could wind up with it if I kept allowing my asthma to flare out of control. I've also had other patients with it, but they were either in an earlier stage or they died of something else.

This story brought tears to my eyes. Thank you so much for sharing such a beautiful experience. That family obviously knew what wonderful care you provided their loved one! :)