Jill

A massage can make a world of difference. The stress and tension this disease can cause for many people can not be underestimated and leads to tight muscles which if ignored lead to pain, especially in the neck and shoulders.

Please, anyone, let me know if you have any questions about how bodywork can help improve the quality of your life as you cope with PF. It’s a subject dear yo my heart.

Hi! I am a practitioner of manual medicine…. Rolfing (R) Structural Integration, massage, have studied with  a manual osteopath for ten years and have many other manual therapy certifications…. Before having such a radical surgery, please please find a good manual therapy practitioner, ideally a Structural Integrator or manual osteopath.…[Read more]

Karen and Sue, thanks so much for posting on this subject… it never occurred to us that there might be an insurance  liability issue! Sue, did your rates go up with either insurance company when you told the you have oxygen in the house and car? And did they require the sign on the door?

Thanks!

Sue and Wendy, thanks so much for taking the time to reply! I appreciate your time and information. I’ll look into the Caire Hi flow and see if it’ll meet my husband’s needs.

Hi! We’re preparing to buy a 10 litre continuous flow concentrator since my husband needs to switch to liquid oxygen… the POC doesn’t give enough oxygen. Since insurance will only pay for one, we’ll use it for the liquid and his pulmonologist is writing a prescription so we can buy a continuous flow for home and use the liquid for errands, hikin…[Read more]

Definitely worth asking your doctor about, since there are many remedies to try. My husbands cough got much better when I read on one of these threads, or maybe on IPF Facebook pages, that taking Prilosec or other ppi can help. He had no symptoms of GERD, but the Prilosec definitely helped, so we think the cough was a symptom of silent GERD, which…[Read more]

Dave, thank you so very much for the detailed and informative answer. It’s super useful and much appreciated. It emphasized for me that transplant really does change one set of problems for another, hopefully better set of challenges. It was sobering to read your response, and I find it so interesting the range of responses I’ve gotten from the…[Read more]

Thanks so much for your info! I’m getting both responses…most people do as you suggested, some went straight to the transplant center. It’s been pretty interesting to see. We have a great and responsive pulmonologist, so I think we’ll start with him. Thanks!

Hi, Mark, thanks for your help! Can you please tell me how you were getting your 6-8l of continuous flow? Were you able to find a POC for that much or were you using either liquid tanks or gaseous tanks? Thanks

Mark, that’s so helpful, thanks so much for sharing your experience and the link!

I’ve been researching everywhere I can think of to answer the question of interactions between herbs, chinese and western, with ofev, and haven’t had a ton of success. The Wei inst herbs don’t seem to have a stellar reputation for effectiveness in the IPF community,  although if they were cheaper, we might try them. For now they’re on the list as…[Read more]

Thanks for sharing your experience! Bummer that you couldn’t tell a difference after investing so much money. Did you by any chance ask your pulmonologist if there were any contraindications to taking the Wei herbs at the same time as ofev? Thanks

Thanks, this is very useful. Denny, are you on ofev? We asked my husband’s pulmonologist and he had no opinion as to the Wei Inst herbs efficacy, and so far no one on the IPF Facebook groups has had good results, or knew if it was a safe protocol while on ofev. We asked the specialty pharmacist if they need of any reasons not to take western h…[Read more]