Jill

My husband took breaks  any time he needed a higher quality of life. Holidays as well as mental health breaks. Did them on his own as needed, maybe three times the 18 months he was in it, each time hoping  it would reset his system so he’d be cured if the gastro symptoms, and that never worked. He finally went of it over the summer and is much hap…[Read more]

If your state and oxygen supplier has liquid oxygen, those portable units go up to 15L. That’s what my husband uses both around the house and when he leaves. He wears it in a backpack or the shoulder strap it came with. I know not all states have liquid, but it sure is wonderful compared to a d or e tank. By the time he was diagnosed he needed m…[Read more]

Hi! Little bit of a rant here, and not exactly answering the question, but related. My husband with ipf was diagnosed last august with severe silent gerd as part of his transplant evaluation at St Joes in Phoenix. He was told to sleep elevated, double his omeprazole to 40g/ day, avoid acidy foods etc.  Since his gerd was completely asymptomatic,…[Read more]

Has anyone gotten an antibody test before getting a third shot? I’m concerned that there’s not yet been enough time to study any possible dangers from getting a third shot when we still have a high level of antibodies. I read one report of a small study (can’t find it now) of heart myocarditis seemingly resulting from a third shut  not needed…[Read more]

<p style=”text-align: center;”>Can’t speak to overall criteria, but we just finished the transplant evaluation process at St Joseph and overall have been quite happy with them. At least so far, we don’t have a dedicated pulmonologist there. They work in a team so we direct questions to our transplant coordinator and she gets an answer for us or…[Read more]

My husband sticks it in a soft sided glasses case (they come to its little clips attached) that then lives in the pocket of the backpack he uses for his portable liquid oxygen, and hooked it onto the handle of the cart when he had to pull tanks in Phoenix for his transplant evaluation. At home that glasses case just lives on the coffee table or…[Read more]

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!