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Sadly, there is nothing that one can take. There is a lot of snake oil promises out there too. So be careful and not waste your money on those. There are only the two meds approved for treatment of pulmonary fibrosis. And as you have found out they are very expensive. My husband had very good insurance and was able to try both treatments. Unfortunately they didn't help him and the side effects were so terrible for him that he decided he had rather have some quality of life than quantity. We explored every avenue possible. Even was granted an interview for a possible lung transplant. But was denied because of his age,75, and other health issues. So, he said "It is what it is" and lived out his last days doing what he enjoyed and preparing me for life without him. For that I am thankful. I hope I don't sound too harsh, and every case is different. Just enjoy whatever time you have left together and never give up hope. But try to be realistic also. May God be with you on your journey.
Replies to "Sadly, there is nothing that one can take. There is a lot of snake oil promises..."
My husband is 76 and has IPF. He has done well for 2 years after his diagnosis, until last November. He suddenly got worse and was immediately put on an oxygen concentrator at night and portable oxygen as needed. 4 1/2 months later and he's on oxygen all the time and can no longer take walks with me or go to the grocery store. A couple of weeks ago his cough got much worse and sounds like there's a ton of fluid he's trying to cough up.
He also turned down the medication due to the side effects, not to mention the cost. His statement was the same as your husband's; "It is what it is." We now spend time walking through our memories of 40 years of love and life together. He's working on legacy projects for the kids and grandchildren. We became great grandparents last November. We're working on his end of life arrangements and Palliative Care for both of us. I'm in counseling, support groups, and physical therapy in preparation for living without him. I'm grateful for our time together.
How long did your husband live after he was at the point mine is? I have the feeling that he won't last as long as I hoped at first. He's going to end his life when it becomes too difficult. He's not in pain, just drowning. Thanks for posting your experiences on Mayo Connect. GailB
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I do try to be realistic. Mine is also 75 and not in good health, with diabetes and a kidney transplant 3 years ago. He does not yet know that this is not a cure. I've told him but it is not registering. He's only been diagnosed a little over a month ago. But, we have to go through every possible route. The VA doctor is prescribing him Esbriet and she said she has many patients doing pretty well with it. We are trying to enjoy every day and be cheerful. What did you plan to do when he was gone? I don't want to live with my children, although the girls have offered. I have 11 grown children now. Will you please tell me your story so I can learn from it? thank you.