How Do You Tell Others You Have a Terminal Lung Disease?

Kim - thanks for your article. I approached a little bit differently. I toldy family and friends that I had a lung disease that caused scarring in my lungs (my lungs are turning into leather) and that it's progressive. Then I answered any questions and then got down to the fact that I would likely die from this but it would depend on how fast it progressed. It has been about a year and a half since my diagnosis of IPF and everything has been stable. I didn't provide any of the statistics because they are old and very outdated. I hope your fibrosis can be stabilized as mine seems to be. Thanks again for sharing.

Hi Kim, so much of what you write strikes home for me. Thank you for sharing your experience. The hardest for me has been talking with my 16-year-old son. He knows I have pulmonary fibrosis (mine is related to connective tissue disease, not idiopathic), and he knows I have next to no energy some days. He knows I have to travel out of town to see my specialist every 3 months. He knows I have lots of medicine to take and oxygen when I exercise and sleep. But he does not know how serious it is, not really. One day he found me crying in the car and when I told him I was worried about the future, he said "Mom, it's going to be OK." I asked my therapist if it is honest and fair not to push the truth on my son. His answer has helped me a lot: we are all dying; some of us are just doing it faster than others. We have to use this time to live, in the way that is most meaningful and valuable to us and those we love. I choose to believe that is what we mean we tell people "It's going to be OK." We can make this OK, not that we will be OK healthwise, but we will be OK if we choose love and joy as often as we can in the time we have with our loved ones. Thank you again for your powerful words.

I was initially told that I had pulmonary fibrosis last year. After being told that I did not have cancer or COPD I remember saying to my doctor "Not cancer, its all good" Usually I am very diligent in looking into stuff but for some odd reason I took this as nothing more than a serious form of asthma and as long as I did what I needed to do, it was all good. This past Dec I developed what I thought was a nasty cold. After dealing with my primary and not getting any results, I went to my pulmonologist because I knew this was not something that I should play around with. It was then that he really spelled out the severity of what I was dealing with.

Because I was dealing with Graves Disease and needed to get that in order putting me on one of the new drugs for the fibrosis needed to be put on hold. When I see the doctor in March we will begin the process of getting me on the meds.

Hearing the sobering news of what I was facing, after my initial pity party, I told my husband the news when I returned home from the doctors and gave him the news. I have told my children, but not my grandkids at this point. And slowly I am talking to my circle of friends. Not looking for sympathy but let them know what is going on so on those bad days they will know and be able to lend the shoulder when I need it.

I have every plan to fight this to the bitter end and knowing I have the support of family and friends is helpful. Not only for me but also for my husband as I am sure there will be days when he will need to be able to let his guard down to others who will help support him.

Thank you for your letter. Like you I have days when it seems like I am sleeping a lot. But I will continue to put up a good fight and when I need to rest I will do so, knowing my body knows what is best for me.

I was diagnosed with IDL after years of them trying to figure it out- after my pulmonary embolism which I narrowly escaped death..I wasn't recovering..and ir was like now what..months went by -first only needed o2 at night, then at night and with activity..late May my situation escalated...going thru a lot of oxygen-had open lung biopsy (wedge surgery) in August and got diagnosis of IDL-told my adult children first (my husband already knew same time I did)..put on high dose of steroids. Long story short- they also misdiagnosed Pulmonary hypertension and I almost died at beginning of December. I was air lifted to another hospital...so now I have 2 fatal diseases to contend with. I am determined to live . I want to see my daughter married and have at least one child. I don't drink or smoke and lead a clean life..have to ask myself at times..how did I get here..the good news, people have been amazing..anf the power of prayer...

Can I join this conversation from Australia? I am the wife of J. an IPF man. We heard the diagnosis and yes the prognosis when we were together with the specialist after we returned from an overseas holiday. J. had had some breathing difficulties in the last 3 hours of the flight. The specialist answered J's question, "How long have I got?" with a straight answer, "17 months to 5 years". We were shocked and grateful to hear it clearly told.

J is now finding it difficult to walk from room to room, yet today he has been to his U3A Book Club. When I came to pick him up one of his colleagues, asked me what was wrong with him and I said,"He has a terminal lung disease. There is no treatment." She thanked me and told me how much they valued him in the group though he sometimes disliked the book they had been reading, and so made different comments from other members.

Even 11 yr old children in our circle accept he is living now and making each moment count because his life will be shorter. I am pleased he has been able to communicate this so gently and factually.

Thanks for this column, Kim.
I notice there haven't been any posts here since February 16 2017. Is it still active?

Years ago I learned an important lesson when I was diagnosed with bladder cancer. I was reluctant to blast the news out to the family and asked my wife to let me share the news on my own time.

That was not the fair or right thing to do. She suffered greatly by having to bottle up the news. Knowing what she knew and not being able to share it with the family was tearing her apart. She needed support just as I did. When I finally woke up to the fact that I was being selfish and hurting the most important person in my life, I told her to go ahead. It was a sudden relief for her that made me feel much better.

That's all long past and then I was diagnosed with IPF, this time getting the news from my Dr with my wife. When we got out of the office she was immediately on her phone texting our children while I drove home. We let them handle the grandchildren. We are both much better off taking this approach.

The trauma surrounding IPF diagnosis is enough without putting inhibitors on spreading the news with family. As a IPF patient I feel far worse for those that care and worry about me than I am about what I will/may eventually go through. We are all in a much better place because my wife shared the news quickly. Each family member handled the news in their own way and my wife is not a basket case from bottling up the news. I highly recommend the approach.

Handling friends is different. When friends ask the typical "Hi, how are you" greeting, I simply say "I'm ok, although I was just diagnosed with IPF. How are you?" When they ask "What's that" I tell them it's a fatal, incurable lung disease. When they start making the "I'm sorry" sounds I simply tell them, "That's ok, it is what it is." I'm not one that wants sympathy, just acceptance of reality.

The fact is we'll all die of something. I know that if I don't die of something else first, I'll die of IPF. Frankly, I hope I'll keel over and die of a heart attack mowing the front lawn first but I can't control that. It is what it is.