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Jill replied to the topic travel while on ofev in the forum Ofev (Nintedanib) 3 months, 2 weeks ago
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]
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Jill replied to the topic Leaving the house on 4LPM oxygen? in the forum Diagnosis Information and General Questions 3 months, 3 weeks ago
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]
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Jill replied to the topic Sleeping with head elevated in the forum Diagnosis Information and General Questions 6 months, 3 weeks ago
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]
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Jill started the topic Pulmonary hypertension as the main reason for transplant in the forum Pre/Post Lung Transplant 11 months, 3 weeks ago
<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 it’…[Read more]
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Jill replied to the topic Vaccinated PF people and COVID 19 in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 4 months ago
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]
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Jill replied to the topic when rejected for transplant in the forum Using Our Forums 1 year, 5 months ago
<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]
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Jill replied to the topic Concentrator nasal cannula storage in the forum Diagnosis Information and General Questions 1 year, 5 months ago
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]
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Jill started the topic Quality of life in the forum Pre/Post Lung Transplant 1 year, 7 months ago
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 the…[Read more]
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Jill replied to the topic Severe neck and shoulder pain in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago
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.
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Jill replied to the topic Slipping Rib Syndrome in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 7 months ago
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.
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Jill replied to the topic Slipping Rib Syndrome in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 8 months ago
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]
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Jill replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago
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!
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Jill replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago
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.
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Jill replied to the topic Supplemental Oxygen Questions in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 8 months ago
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]
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Jill replied to the topic Coughing in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 9 months ago
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]
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Jill replied to the topic Working after transplant in the forum Pre/Post Lung Transplant 1 year, 9 months ago
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]
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Jill started the topic Working after transplant in the forum Pre/Post Lung Transplant 1 year, 9 months ago
- 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!
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Jill started the topic Nausea in the forum Ofev (Nintedanib) 1 year, 10 months ago
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
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Jill replied to the topic Referral to transplant center in the forum Diagnosis Information and General Questions 1 year, 10 months ago
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!
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Jill started the topic Referral to transplant center in the forum Diagnosis Information and General Questions 1 year, 10 months ago
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
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