[ted-ted-fecteau]

Hi Gavin,

I am sorry to hear the anxiety in your post. I feel for you and understand. I am 79 and was diagnosed with NSIP back in 2017. I was frightened and anxious as well. I got no satisfaction from doctors or nurses and searched and read all I could find on the internet and in books. Nothing that fully explained me and my condition.

What I did find was everyone’s story was similar but different. there are over 200 different lung diseases/conditions with most being rare. Despite lots of research, lots is not known about how to treat these diseases much less cure them. There are not many answers to our questions.

This is where I have learned to accept what I cannot change. I no longer worry and fret. I count my blessings and not my losses. I have used my time in geneology searches to allow my children and family some knowledge of their ancestry. I’m interested and my mind is occupied. Time passes very slowly now and I am very aware of life and the beauty that surrounds us all. This is not a practice run – this is it. Don’t miss it. Appreciate it -carefully.

[ted-ted-fecteau]

No, but there is a reasonable review of the film by The Guardian news when you Google the film name. And a film clip. Seems to be not so much about IPF bu about struggles with one’s own death.

[ted-ted-fecteau]

 

@jgeigle

James, in addition to this support group, another very good online group fo information is inspire.com. Use google search online to search for of support groups in Los Angeles and you will find a number there. You can also probably find others who have experience with second opinions at the other Center’s you mentioned. Read, read, read to learn as much as you can but don’t necessarily apply to yourself everything you read or hear. We are all different and while today’s medical knowledge and practice is far improved above even 15 years ago, so much is still unknown. But a lot of information collectively can start helping understand what is happening to us.  Take care both you and your wife. All is not immediately doom and gloom. The road ahead is more likely to be a long and slow one.

[ted-ted-fecteau]

@mark-koziol

Mark, sorry to hear about your brother. He was clearly a loved one. While we all will pass away eventually as a natural part of life, the loss of a loved one is a difficulty for those left behind. Thankfully the loved one will always be with us in our heart and mind and in our total makeup. They will have passed on much of themselves into our makeup. In effect, they live on in us.

[ted-ted-fecteau]

@mark-koziol and others

Hello, I was diagnosed with NSIP, a form of PF and IPF (I think), and used to have phlegm that I could not cough up. But I, over the last year or more, have been able to cough up enough during the first hour or so after awakening, so the phlegm now only occasionally sticks in my chest or throat. But during the earlier difficulties, my NZ Hospital respiratory physiotherapist gave me a small hand sized implement called Pari O-PEP (Oscillating Positive Expiratory Pressure) made in Germany by the Pari company. When breathing in through the nose and out slowly and completely through the mouth and Implement, a steel ball inside is caused to oscillate/vibrate causing the lungs in turn to vibrate helping to dislodge the phlegm in the lungs helping it to be coughed up and spit out into a tissue. This worked well for me. I hope this helps.

[ted-ted-fecteau]

I echo all the feelings expressed so far for our beloved Kim. I echo the sympathy to her family and close friends like you Charlene. I also echo the sympathy to her extended flock of PF compatriots who have come to feel her compassion. I mourn her loss too. I thankfully celebrate her selfless giving to us all and will remember her and her encouraging voice to be gentle with ourselves. Peace.

[ted-ted-fecteau]

I do belong to two local support groups here in NZ but am the only one in both that has something other than asthma and/or COPD.

[ted-ted-fecteau]

I live in New Zealand and am treated by the government health services but … have yet to find nurses or doctors that know enough to be able to talk to about anything related to pulmonary fibrosis much less the fibrotic NSIP they have confidently diagnosed. I know what little I know about it from researching the internet and from inspire.com and forums like this. Taiji, qigong and the rehab exercises help me feel better but the mental uncertainties are almost more hurtful than the physical. I have accepted the physicalities but still struggle with the mental uncertainties. Good to have these forums to share with others.