New here: Caregiver for my husband with idiopathic pulmonary fibrosis

Hello @shackie8 and welcome to Connect. I can understand your wanting to know more about this diagnosis and meet others who are dealing with this.

Here is a link to a discussion group on Connect where you can meet others who have this diagnosis. Just click on the link, https://connect.mayoclinic.org/discussion/pulmonary-fibrosis/. I would like to introduce you to others who are caring for someone as you are such as @gailb and @wreath.

Here is some information on this disorder from Mayo Clinic's website, https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/symptoms-causes/syc-20353690 and
https://www.mayoclinic.org/diseases-conditions/pulmonary-fibrosis/diagnosis-treatment/drc-20353695.

What information has your doctor given you about living with this disorder?

I don't understand the no o2 until his level is at 59, but I do understand how it lowers with any exercise/movement. My DH has that happen to him also. I have talked about it in other posts if you want to look at my name and recent posts. Best of luck to you and your man.

Thank you I’m trying to figure out the follows and comments thank you 😊

I don't understand no oxygen until it drops to 59. At that level he would probably pass out or be gasping for breath. The oxygen should never go below 90 for very long. When it does, damage is being done to other organs. I would suggest also that you seek help from a Dr that specializes in pulmonary fibrosis. A regular GP doesn't have the knowledge your husband is going to need. My husband had a local lung Dr but he also went to a specialist at the Mayo Clinic. They helped him and me tremendously to understand and prepare for the journey we were on.

Thank you. He does have a specialist. We use va. And you may be right. His gp is the one told us that. We don’t see him
Until end of august. We can leave messages is about it. So far no major issues. I just don’t know what to expect. Idk if it can drop all of a sudden at anytime. Just so much to learn. I’m researching the everything. Thanks so
Much

Both lower lungs are not taking air. Showed us cat scan. He is not eligible for transplant. Kidney and liver evaluation before being able to choose 1 of the 2 pills available. Stay in on humid days avoid sprays colognes and such birds and cats. Thank you

this is the link that talks about some of the treatment for my DH, although his condition is not the same as you man's.
https://connect.mayoclinic.org/discussion/airplane-travel-with-oxygen/?pg=2#comment-721478

I was on OFEV, albuterol, bretezi, trilogy (did nothiing for me), Travaso (but that is very expensive [app $30k a month] and hard to get the insurance that I had to cover it) , as well as. four other medications. Without oxygen I couldn't get my stats up to the 50s. However, I was on 5 liters of oxygen at the time and on that my O2 stats would drop to 39 when going to the bathroom or having my husband give me a shower (before transplant I could no longer give myself one) while on oxygen. I couldn't get my O2 stats to go up to 80 even. I would discuss with the pulmonologist, because like others have stated they are more experienced with the lung health and measures that can be used.

Update on my husband. I wanted others to know he has been on 150 mg nitintab for a month with no harsh side affects. He will get blood works first of sept to see if f kidney liver ok. This was 1 of our concerns about the is medicine. I want to share for others weighing it out. He is still on 2 liters o2 still eating well. I hope Dr can tell is next week if the pill is working. He said it only works in 40 percent of ppl. Also palletive care coming in sept. We are happy for that. And will keep
You updated about that. I don’t know how to navigate this site so Il akways comnent here. And I hope others on sane journey can leave there story here. Thanks for this great site

Sounds great and I hope that it all works for him. Please keep us updated about the blood work. You and your husband will be in my prayers.