Robert Morgan
Forum Replies Created
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I have similar problems. I use Arm and Hammer Simple Saline mist several times a day. Nasal rinses in the morning or as needed. Mist and saline gel at night. The gel stays in my nostrils as I sleep. I also have used saline mist gel but not convinced how much it helps. At night I have a high-end AirOSwiss humidifier to keep the bedroom air moist. Despite all this I have persistent nasal blockages that can be difficult to clear. I have tried decongestants like Flonase and Sudafed but they made the congestion worse. I am seeing an EMT doctor in a week and hope he will have solutions.
The pain may be from the saline or the high oxygen or both. I did not have the nasal congestion at lower flow so I did not need to use saline.
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I am on high oxygen and experiencing irritation of my nasal tissues, including crusty accumulations of bloody tissueand soreness. Two treatments have helped. Simply Saline by Arm & Hammer injects a fine saline mist deeply into each nostril. It has no additives, which some reports say are damaging to the tissues. I use it several times a day. You will need a tissue to catch drips. The other treatment is Ayr saline nasal gel with aloe vera. It coats the tissues of my nose and helps reduce drying. I apply in the morning and at night with a Q-Tip or equivalent cotton swab. Neither of these give immediate relief but help reduce the irritation of the nasal tissues.
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Great. IPF has reduced my appetite and food consumption, and consequently caused significant weight loss and lower BMI. It is a vicious circle. Taking famotidine, the generic Pepsid AC, has helped with acid reflux and increased my appetite somewhat. I am taking 100 Mg OFEV twice a day along with 801 mg Esbriet three times daily.
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This needs work. 1) Do not bury the lead. The introduction is way too long, includes too many names and details of the source of the information being presented before getting to the meat of the podcast. It is far more beneficial to summarize the results first. 2) Content is very technical with a lot of medical terminology, abbreviated references and acronyms. Hard to follow aurally. 3) It would be helpful to include in the list of the programs a succinct summary of the content, similar to how news is presented on TV and in newspapers. 4) The speaker has a robotic voice that is hard to listen to for any length of time without nodding off. 5) If possible, a link to the paper, press release or other source of information should be included.
The model of this service should radio news programs like NPR’s Morning Edition and All Things Considered.
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There are clinical trials for just about every disease. PFF has a clinical trial finder for pulmonary fibrosis here:
https://trials.pulmonaryfibrosis.org. You can find sources for other types of clinical trials through Google or other search engine. -
I have been taking simvastatin for many years and do not believe it interacts with Esbriet, the medicine I am on for IPF. Statins reduce cholesterol which can clog blood vessels and put strain on the heart. IPF reduces lung function which also puts strain on the heart. For that reason, I think it would be a bad idea to stop taking your statin. There are several types of statins, however, and you should consult your physician about switching. Some of the types can have bad side effects. I have been losing weight since starting Esbriet, but I have also had a slight increase in my cholesterol levels (both types).
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This web site provides specs for Portable Oxygen Concentrators including both pulsed and continuous flow models. The continuous models have a limited range of flow, up to a maximum of 3 liters per minute. https://www.portableoxygensolutions.com/portable-oxygen-concentrator-comparison-guide/ When I travel within the US, I make arrangements through my local oxygen supplier, LinCare, to have a full-sized, non-portable, concentrator delivered to my hotel. The cost is covered by my Medicare Advantage plan. If your regular supplier will not do this, I recommend doing a web search for oxygen concentrator rental [City]. I was even able to find a supplier in Cancun Mexico where we are going in October. The cost for two weeks was $270 including delivery and pickup. I made all arrangements by internet, including making a deposit through PayPal. If you are traveling by air, you must check your airline on its requirements for bringing a POC on board. You can usually find the information by searching the airline website for “oxygen.”
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I discovered a website that provides a comparison among the most popular models of Portable Oxygen Concentrators. https://www.portableoxygensolutions.com/portable-oxygen-concentrator-comparison-guide/ There are many tradeoffs of weight, cost and battery life. Your oxygen supplier will likely offer only some of them. Although most come with a carry case, I ordered a backpack from Amazon for my Inogen One G3 to keep my arms free. It was cheaper and better than the one offered by Inogen.
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I need a POC for travel and it is complicated! My oxygen supplier, LinCare, says there is a backlog in getting them. We have a trip planned in mid October, and I may have to rent one for about $125 a week. There are several websites that rate the different makes and models. Inogen One G3 is highly rated in most reviews, but LinCare won’t carry it. If you can choose, check out the comparisons on line. There are a lot of differences in weight, battery life, etc. The G3 has the advantage of allowing users to replace the sieve filters rather than having to take it or send it to a distributor to get it done. The sieves and spare batteries are expensive. For our vacation, we plan to ask the resort where we are staying to find a source for renting a continuous flow machine, which I need when I am sleeping. Medicare will cover the cost in the US for a period of years but I do not believe it will also cover tanks. Most of the POCs are approved for airline travel, but you may have to get an official document from your pulmonologist first. I am interested in what experience users of the forum have had with POCs.
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My pulmonologist recently switched my IPF medication from OFEV, which I took for a year and a half, to Esbriet. This was in response to a recent study that indicated taking a combination of the two was more effective at slowing the deterioration of the lungs than either alone. I am in my third month of Esbriet and have not yet been directed by my pulmonologist to start taking it in combination with OFEV. In contrast with OFEV, I have experienced no diarrhea, normal appetite, recovery of some weight loss, and no stomach problems. The major side effect is high sensitivity to UV rays, which hit me in the second month. I did not apply sun screen as recommended and my arms became red and itchy. I have been treating them with skin moisturizing cream and cortisone cream. I have not had a lung function test since beginning Esbriet so I do not know whether by itself it is more or less effective than OFEV. A major difference in the two is that OFEV is taken twice a day, Esbriet is three times. This is annoying because it requires remembering to bring the midday pill when away from home during the day. I am hoping that current research and trials of other treatments for IPF will be approved before my condition worsens substantially. I am monitoring this and other websites and have not seen any announcements so far.