DMoffett
Forum Replies Created
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I agree that different centers have different criteria. The Mayo Clinic told me 74 was the oldest the did. The problem I have is how can our government allow medical institutions, who live off federal subsidies, openly discriminate based on age. Their discrimination can result in premature death of patients, isn’t that a conflict of their hypothetical oath? It is just a continuation of open age discrimination that is overlooked in America. They should be doing everything possible to save our lives.
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Somewhat, it definitely is a bit confusing. The Inogen One G5 produces a maximum of 1,260 milliliters (ml) per minute or 1.26 liters per minute (lpm). It has 6 settings, so setting 1 generates a little over .21 liters per minute, level 2 generates .42 liters, and so on increments of .21 1liters up to a maximum of 1.26 liters. The numbers on on the inogen has no relationship to the prescription given by a medical professional.
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Is the trial for Bexotegrast?
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So I am on the 6am and 6pm OFEV medication times. For my morning dose I have a 3oz chicken breast or thigh and a tablespoon of potatoes (baked or mashed), I prepare 3 days worth at a time. I take my OFEV 1/2 way through the meal with a full glass of water. At the 6pm I just make sure I have a slow digesting protein (chicken, lean red meat, lean pork). The gastroenterologist said OFEV, as well as other meds taken 12 hours apart are slow digesting, and because of OFEVs tendency to cause gastrointestinal problems, I need to match a slow digesting protein with it to minimize the impact. So I tried it and I have been primarily (80-85%) problem free. A great deal better. And I stay away from things that OFEF taught me it does not like – caffeine, alcohol, lots of sweets and oily foods.
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My pulmonologist suggested I add plants, All plants absorb carbon dioxide through a process called photosynthesis, using sunlight to convert carbon dioxide and water into sugar; some common examples include: <mark style=”font-family: inherit; font-size: inherit; -webkit-text-size-adjust: 100%;”>snake plants, aloe vera, jade plants, areca palms, orchids, tulsi, Chinese evergreens, and rubber trees</mark>, which are particularly effective at absorbing carbon dioxide from the air.5
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Sorry to hear about your situation. I have a gastroenterologist that I meet with to discuss any gastrointestinal side effects I have had with OFED. She has been incredibly helpful, I think we to often rely on our pulmonologist to be our go to person for all ailments. They base their gastro advice on other patient feedback, seminars and sales persons. She has helped me choose the right fossa to pair with Ofev to minimize my gastro reactions, and what a difference. She is at the university along with my pulmonary doctor and they work as a team with IPF patients.
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I changed doctors recently and am on a trial. One of the senior physicians on the trial was talking with me and I mentioned the diarrhea issue with OFEV. He indicated that I needed to eat at least 3 oz of protein with OFEV, he said that the med breaks down slowly and I needed to have a protein that also broke down slowly. He suggested lean bland poultry (baked, broiled, steamed or boiled). I started that a month ago and have not had the problem since. Now If I have diarrhea it is usually self induced, spicy food, chocolate, dairy, are my hot buttons.
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I have been dealing with the dreaded diagnosis of IPF for 4 years, been taking (OFEF 150mg 2x a day) from the start. My doctor told me after treating me for over three years, he thought I should switch to a center that had more experience with IPF. He is a board certified pulmonologist and the Department Head, but he said “Frankly there are very few people in America who have IPF”. He suggested I select one on three locations near us that had expertise dealing with IPF. I have a great deal of respect for him admitting his limitations, I wish he had a few years earlier. So I choose one that is two hours away, a university hospital. Within two visits I was accepted into a trial. There is a site to see how hospitals rank in Pulmanary Fibrosis care and research, it is your health, well worth the research.
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I have had IPF for 3 years and been taking 150mg OFEV twice a day since I was diagnosed. I have been doing all the normal testing, liver, lung function, X-rays and CT scans. A month ago I met with my doctor to review the results and he informed me that I had progressed to stage 3, and he had run out of options and was going to refer me to a specialty hospital for a consultation and/or treatment. He said I have to accept that there are not that many patients with IPF so a specialty hospital has more access to resources that he does. I thought, now you tell me. I live in Savannah, Ga. So fortunately I got an appointment at MUSC in Charleston, after my initial visit and a full day of tests, I now have oxygen when I do Activities, I am doing Physical Therapy, and I will find out in two weeks if I am accepted into one of two clinical trials I was enrolled in. On the 25th of June I have a day of testing and a day or two after that I will know. So my advice is get into a specialty hospital to treat you. They have access to trials and have amazing doctors and equipment. It is your life, take charge, no matter how much you like your current doctor.
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Hello Margo,
Understand your concerns. Saying that, Ofev is an excellent manager, he will learn what he can eat or what will have a reaction with Ofev, it is a bit unforgiving. He needs to keep his weight up, so if he can eat jerky and have no adverse reaction, let him, my opinion. As far as travel, I am planning a trip that requires air travel, I talked to my doctor so he ordered a high altitude test and determined I would not have a problem. He said I would notice a minor difference and I should carry my inhaler and use it if I need it. The key recommendation I would make is that he take daily walks and keep active. It is a journey, Ofev and his body will manage him. As far as his dad, he needs an air filter in the basement, I don’t allow smoking around me at all.
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I did have an adjustment period, my doctor prescribed an enhaler, Albuterol Sulfate, I used it for a few weeks and then it settled down and I only use it on difficult days.
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Welcome, and bless you and your journey before you. OFev is an adjustment period, learn what foods work for you, OFev will tell you what doesn’t. Talk to your doctor about Rx strength Omega 3 fish oil, there are great research studies that describe the positive impact it has. We are all here to support you Dan, just reach out.
Don
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I have taken RX strength omega 3 fish oil during my IPF ordeal, as well as Ofev. The progress has dramatically slowed, I would definitely recommend taking it. If your DR prescribes it , most likely your insurance will pay and you will get highly refined RX strength. A decent article: https://newsroom.uvahealth.com/2024/01/03/healthy-omega-3-fats-may-slow-deadly-pulmonary-fibrosis-research-suggests/#:~:text=Fibrosis%2C%20Research%20Suggests-,Healthy%20Omega%2D3%20Fats%20May%20Slow%20Deadly%20Pulmonary%20Fibrosis%2C%20Research,fibrosis%2C%20UVA%20Health%20research%20suggests.
newsroom.uvahealth.com
Healthy Omega-3 Fats May Slow Deadly Pulmonary Fibrosis, Research Suggests
Higher omega-3 levels were associated with better lung function and longer transplant-free survival for patients with pulmonary fibrosis.
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My doctor immediately discussed the medications, I choose OFEV because of its successful track record. He explained the possible side affects and In experienced many, most of which I caused myself by not avoiding foods that I should have. OFEV is unforgiving, follow the rules and you will adjust. Learn from others experiences on the forum, I have had a smoother adjustment when I did that. Don’t prolong
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I have had Pulmonary Fibrosis for 2 years. I at times have breathing difficulties, my doctor put me on a Abunzinal inhaler twice a day, and if I experience difficulty I can add a third. It does the trick. Upon diagnosis, my Pulmonologist put me on OFEV 150mg 2x a day. It did take some adjustment, however I followed the routine, took advice from users on this forum and I have adjusted. I am fortunate that with the inhaler, OFEV and dietary guideline adherence, I have greatly slowed the progress. Don’t let people scare you away from OFEV, I admit it is a hard adjustment, but considering the alternative, it is well worth the effort.
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I am 72 years old with IPF taking OFEV. I have muscle aches and pains primarily when I am not active. Do to some side affects I just sit around, read and watch TV, and it is absolutely the worst thing I can do. I got past that phase and make myself walk, do things around the house, most important be active.
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Interesting, I made oatmeal cookies with cinnamon and raisins, and it did the trick for me, I can see where the cinnamon raisin bread would work as well. I cut the white sugar by 2/3 and increased brown sugar by 1/4 cup. I used the Quaker Oats recipe. I eat a couple abd take my OFev and then a third one, and I am good to go. It is all about what works
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I was given fosfomycin
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I was diagnosed with IPF 2 years ago. My doctor recommended OFED and I began taking it twice a day. I have to say it was a learning experience, OFEV is unforgiving, if I ate the wrong thing I paid the price. Saying that I learned from experience and others on the forum, I am stable and my numbers are good. I have not had to rely on oxygen, knock on wood, I do use an inhaler twice a day and it greatly reduces my cough. My doctor says I have stabilized. I have started using the zinc supplement and I am scheduled for the complete battery of tests in March. Time will tell if OFEV helps or not, however I have become an avid reader about IPF both in American Medical publications as well as those in English from other countries and it appears that it is the medication with the most promising results.
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I have been on on Ofev for 2.5 years. My last appointment was in January 2023 and the doctor was very surprised at the very slow rate of growth, i a still at stage II for over a year. He moved me to an annual appointment, so in January 2024 I will have a report. I feel good, I still work in the yard, and took the high Altitude test (HASP) and was cleared to fly without oxygen assistance. So I would say that Ofev is working.
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Crackers and peanut butter with 9pm Covid , English muffin and vegan sausage with pill at breakfast. Like other posts, eat 1/2 food take pill then other half. Stay away from acidic foods. I miss my Bloody Mary.
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Sorry, typo, choose the right protein, a slow digesting protein such as poultry breast meat, nut butter, etc, because OFEV is slow digesting.
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https://www.cedars-sinai.org/newsroom/zinc-found-to-play-an-important-role-in-lung-fibrosis/
i have 11 mg in my multivitamin I am adding a 15mg 2x a day