My husband is 4 weeks post transplant and the lungs are doing great, and his breathing is wonderful. He loves not having to drag oxygen with him 24/7. He’s having a tough time on tube feedings since intubation during and post surgery injured his swallowing reflex, but hopefully he will get off the feeding tube this week.  He’s getting… Read more

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… 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… 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… Read more

<p class=”p1″><span class=”s1″>Hi! I am wondering if anyone in this group who has received a transplant got one because their pulmonary hypertension got bad enough that their team said it was time to transplant, even though the lungs were not getting too awful? We’re looking at that as a possibility in the future for my husband… hopefully… 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… 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… 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… Read more

Hi! My beloved is in the process of getting evaluated at St Joseph in Phoenix and here is my current question for those of you who have both been on either ofev or Esbriet and gotten a transplant:are the antifibrotics worth it? Is your quality of life better with the transplant than on the meds?

His quality of life is much lower because of… 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… 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,… 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,… 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… Read more

• Hi! I’m wondering how many of you who have had transplant(s) were able to go back to work if you wanted to? And if you were too disabled to return to work, what stopped you? What made you unable to work? Thanks!

Hi! After a few months of ofev, my husband I’d always nauseous. Imodium kinda helps with the diarrhea but not so much with the naseau. Has anyone found a successful remedy for that symptom? Thanks

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! Can someone please tell me if the first contact  to the transplant center we have chosen needs to come from our pulmonologist, or do we call the center and initiate the process? Thanks! Jill

Hi! Does anyone know if  in addition to IPF qualifying automatically for SS Disabilty, does it also make IPF patients eligible to get on Medicare before age 65? I can’t find that answer on line, so I assume not, but wanted to poll the collective mind. 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!

Hi! Thanks so much everyone for all the kindness and knowledge you share!

I have three questions about exacerbations. Our pulmonologist said they occur randomly but that’s so not a reassuring answer that I wanted to poll the hive mind. He said the anti fibrotic meds are the only way to prevent an exacerbation. (My husband is on ofev). He also… Read more

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… 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… Read more