Forum Replies Created

  • john-fraze

    Member
    March 12, 2024 at 6:10 pm in reply to: New with so many questions

    Hello Margo,

    My name is John. I have had IPF for 7 years. I have been taking OFEV for over 5 years. I also have a heart condition know as Afib.

    I have been to Hawaii many times. If you do go to Hawaii you will need to fly. Planes are all pressurized for 8,000 feet. So it feels like you are at 8,000 when you are really at 35,000 feet. People cannot survive at 35,000 feet, not enough oxygen but most people do quite well at 8,000 feet. So if you go to Hawaii your husband will likely need a portable oxygen concentrator. They run on a battery and you will need enough battery to last 20 hours. 150% of flight time. Most state university hospitals have a booth that can measure the amount of oxygen you need @ 8,000 feet. Medicare bought me one but it’s not suitable to take on an airplane as it was the size of a suitcase and had to be plugged in. I bought my own portable oxygen concentrator. They are expensive, $3,000 including the extra battery. You will need an Rx to buy one. The small battery powered ones are about the size of a book. The weight about 6 pounds including the battery.

    You father in law should, smoke outside or at the very least get a purifier for his space. Costco has good ones on sale for $99 for a few more days.

    Done for the day. Good luck.

    John

  • john-fraze

    Member
    February 22, 2024 at 5:39 pm in reply to: The End

    You might talk to your pulmonologist about the amount of oxygen you are using. There is such a thing as oxygen toxicity. Too much is as bad or worse than not enough. You can also look it up on http://www.mayoclinic.com. I was amazed when I checked into it.

  • john-fraze

    Member
    February 8, 2024 at 7:53 pm in reply to: OFEV cost and assistance

    Open Doors has a cost support program as indicated in a previous reply. I have found it useful. 866 673 6366.

  • john-fraze

    Member
    September 20, 2023 at 8:40 pm in reply to: Saracatinib

    If you want to try this drug as a Guinea pig. You can read up on the right to try law passed in 2017 and signed by President Trump.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7416898/#S14title

  • john-fraze

    Member
    September 20, 2023 at 8:31 pm in reply to: Saracatinib

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7416898/#S14title<div>This article discusses the right to try law. Lots of reading but interesting. </div><div>
    </div><div>John</div><div>
    </div>

  • john-fraze

    Member
    July 13, 2023 at 3:19 pm in reply to: How quickly can pulmonary fibrosis progress?

    I would recommend Imodium to you folks having diarrhea type side effects from Ofev. I have been on ofev for almost 5 years and I have been able to blunt the side effects to a manageable degree. When it gets too bad I skip a dose of ofev to make better, probably only maybe once a month. There is a generic version of Imodium which is much less expensive. Don’t take too much of it. I take one per day and a half one every other day.
    good luck.

  • john-fraze

    Member
    June 29, 2023 at 7:04 pm in reply to: Split Ofev doseages

    I would suggest that you try taking one Imodium per day to help with the diarrhea. I did and it helped. I take one every day and on Sunday, Tuesday, Thursday and Saturday I take an additional one half Imodium. After several years of experimenting this works best. If it gets too bad I skip an ofev dose but not very often, maybe once a month. I have also found that taking the ofev doses exactly 12 hours apart helps control diarrhea.
    I was diagnosed 4 1/2 years ago.

    Good luck on your journey.

    John

  • john-fraze

    Member
    March 2, 2023 at 3:22 pm in reply to: Oxygen Delivery System when needs go up

    You might want to try a humidifier to relieve some of the nose dryness. Also spray her nose with saline solution as it will clean her nose, prevent infection and relieve dryness in her nostrils. Best of luck.

  • john-fraze

    Member
    October 11, 2022 at 2:37 pm in reply to: Leaving the house on 4LPM oxygen?

    I have an Ogen one G5 that goes up to 6 LPM.

    Good luck. They are pricy.

  • john-fraze

    Member
    August 23, 2022 at 7:54 pm in reply to: CONFUSED BY LATEST LUNG FUNCTION RESULTS

    The numbers can change for a variety of reasons. The temperature, humidity, state of his health such as a bad cold or just the sniffles.
    The percentage of oxygen in the air is the same but cold dry air is much more compact than warm moist air so in summer it’s much easier to breathe in cool air conditioning than outdoors in warm humid air.
    Sometimes you will get slightly different results from different labs or at different times of year.
    On the different heart rates it would just be a guess on my part. It could be brief Tachycardia but I would repeat it two or three times a day and it keeps doing it I would call my pulmonologist. They should be able to tell you what all those numbers mean. Leave the pulse oximeter on his finger for half a minute or so before checking the readings.

    Good luck.

  • john-fraze

    Member
    July 28, 2022 at 2:45 pm in reply to: Good Saturated Oxygen Levels Yet With Labored Breathing

    I have two types of oxygen concentrators. One is continuing flow and the other is a pulse flow. I don’t know what you have but when you use a pulse flow machine breathing fast actually slows it down. The instructions with mine say not to breathe fast or deeply as that interferes with the rhythm of the machine. Just to turn the number of liters up but not to breath fast or deeply. Just breathe normally.
    hope this helps.

    john

  • john-fraze

    Member
    May 19, 2022 at 2:24 pm in reply to: Need to start all over

    I just read that it is coming out in generic. It didn’t say when it would be available to get an Rx for the generic version but I assume it should be soon. They will need some time to get the manufacturing process going and then the actual distribution to pharmacies. Ask your doctor or pharmacy when it will be available.

  • john-fraze

    Member
    May 5, 2022 at 3:35 pm in reply to: COVID ON TOP OF IPF

    I am 84 years old. I have had two shots plus a booster. And a flu shot every year for probably 30 or 40 years. I was diagnosed wit IPF in November 2018. I have been taking Ofev since January 1, 2019.

    I contracted Covid-19 either late January or early February of 2022. Symptoms were mild as were my wife’s. We both tested positive with a home kit twice, then negative twice. Felt like we were over it except I developed a constant dry cough, 100 coughs a day is not an exaggeration. My pulmonary doctor Rx prednisone for 2 weeks. After about 5 days or so the cough went away but I seemed much weaker than before. In the middle of April, 2022 I developed a daily nose bleed in one nostril. Went to my pcp who referred me to a ENT doctor. He cauterize my nostril sent me home with instructions  the next night I had another severe nose bleed that I couldn’t get stopped so my wife called 911. They sent an ambulance, 4 EMTs and a fire truck (???). I was transported to the ER where they got the bleeding stopped, packed my nose and sent me home. Within a few days I saw the ENT doctor again and he took the packing out and did some more cantering in my nose. It wasn’t bleeding so he sent me home with instructions. My pulmonary doctor had taken me off eliquis and Ofev until the bleeding was resolved. It has now been over two weeks since any bleeding has occurred so I’m thinking they will be putting me back on eliquis and Ofev soon. I have no idea if Covid-19 had anything to do with the nose bleeding or not. I am starting to feel much stronger and hopefully will regain my strength. I am due for my annual pulmonary checkup so I’m sure I will learn more when that takes place, probably in June.  I hope this information is helpful.

  • john-fraze

    Member
    April 21, 2022 at 3:25 pm in reply to: Dealing with Side Effects

    Has anyone experienced the effects ofev has on nose bleeds?  I’ve been having considerable difficulty with nose bleeds lately. A nose bleed every day for 10 days.  They have taken me off eliquis and ofev temporarily until the bleeding issue is resolved.

  • john-fraze

    Member
    April 12, 2022 at 3:22 pm in reply to: Ofev and anticoagulants

    I have IPF and Afib, I Have been taking OFEV since January 1, 2019 (almost 3 1/2 years.) I have had 4 ablations for AFIB since 2009. I have been taking eliquis since then. When I started taking OFEV they cut my eliquis from 5 mg twice a day to 2 1/2 mg twice a day. I also take flecainide 50 mg twice per day for my AFIB. So far so good. Hope this information helps. I recommend your cardiologist and pulmonary doctor talk to each other.

  • john-fraze

    Member
    October 26, 2021 at 2:36 pm in reply to: abdominal cramps with Ofev

    I have been on OFEV for almost 3 years. I take 150 mg twice per day. At first I had minor abdominal cramps and still do. I started have diarrhea to the extent it was aggravating so I started taking Imodium. It controlled it somewhat. I started taking one every other day and it helped some. I changed to one every day and and that helped even more so now I’m taking 1 in the morning and 1/2 at night. That seems to control the diarrhea pretty well. I only have to go once or twice per day but it seems that every few days I still have a watery stool. My IPF seems to be progressing but very slowly so far.
    Hope this helps.

  • john-fraze

    Member
    October 21, 2021 at 9:03 pm in reply to: Post-nasal Drip: Another Ailment to Deal With

    Remember the formula for water is H2O.

  • john-fraze

    Member
    September 21, 2021 at 8:58 pm in reply to: End of Life

    I feel so bad for that lady and have great fear of putting my wife through something similar. I’m 84 and she is 81. We have been married 63 years and dated 3 years before getting married. I was diagnosed in November 2018 and on OFEV since January 1, 2019. Doing pretty well so far.

  • john-fraze

    Member
    March 17, 2024 at 7:45 pm in reply to: New with so many questions

    My Afib was not caused by OFEV. I’ve had Afib for over 20 years.

    One of the side effects of OFEV is diarrhea, Imodium helps control the diarrhea and can be purchased at Costco for a much cheaper price.

    Also, if the diarrhea is very severe the his doctor might lower the dose from 150 milligrams twice per day to 100 milligrams twice per day. Also, important to take the dosage as close to 12 hours apart as possible, that will help cut down on the diarrhea some. I’m told that smaller people can take the smaller dose and still get full benefits from OFEV.

    A caution about oxygen. Don’t take more than is prescribed because there is such a thing as oxygen toxicity. In other words too much oxygen is as bad for you as not enough. Google oxygen toxicity or go to the Mayo Clinic website and look it up.

    Oxygen concentrators are considered durable medical equipment by Medicare and if you are on Medicare your doctor can get you one delivered to your house for free. Insurance companies may furnish them too, I don’t know. And they can be rented for short periods of time.

    I have probably overloaded you with information.

    Until next time. Goodnight.

    John

  • john-fraze

    Member
    July 26, 2022 at 2:46 pm in reply to: Good Saturated Oxygen Levels Yet With Labored Breathing

    Check your filters on your oxygen machine. You might need to clean them.
    check to see if your medical records show any stenosis in your pulmonary veins that run from your lungs to your heart.  There are four of them. If you have had a heart ablation there is a possibility your pulmonary veins have stenosis. A symptom of this is shortness of breath.   Ask you pulmonologist about pulmonary hypertension. Also ask them about your ejection fraction. I was officially diagnosed with IPF 3 1/2 years ago. I have been on OFEV ever since   I have also had 4 ablations for Afib. Two of my pulmonary veins have stenosis and I am scheduled for a heart catherazation next month to see if they can clear the stenosis.
    good luck on finding the cause of your shortness of breath

  • john-fraze

    Member
    October 26, 2021 at 2:49 pm in reply to: Post-nasal Drip: Another Ailment to Deal With

    My cardiologist has forbidden me to take Benadryl. I have a fib

  • john-fraze

    Member
    October 21, 2021 at 9:00 pm in reply to: Post-nasal Drip: Another Ailment to Deal With

    I have found that the ipratropium helps a lot.