Forum Replies Created

  • John K. Grubb

    Member
    August 1, 2024 at 2:32 pm in reply to: Ofev and abdominal pain

    I have been taking OFEV for about 2 years. Here is what I have found that works for me.

    1. Do not take OFEV without taking Imodium. Best to take Imodium combined with Simethicone. Available at Walgreens. The amount you take depends upon your system and what else is going on in your life. I generally take a half of a table at the time I take OFEV or sometimes 30 minutes before I take OFEV; however if my stomach has been rumbly I will take 3/4 of a tablet or a whole one.

    2. Always carry 2 Imodium tables with you and do not hesitate to take at the very first sign of diarrhea or excess gas.

    3. Anytime you have excess gas it means you need to increase the amount of Imodium you are taking.

    4. Imodium is constipating so I eat a bowl of oatmeal every day. Also eat fruits, greens, and vegetables.

    5. Cut back on all milk products.

    Good Luck

  • John K. Grubb

    Member
    July 5, 2024 at 11:33 am in reply to: Mycaphenalate and Tyvasol-still looking

    I WAS DIAGNOSED WITH IPF IN LATE 2021. STARTED ON OFEV IN APRIL 2022.

    I WAS NOT SATISFIED WITH MY DOCTOR SO IN APRIL 2024 I SWITCHED TO A RESEARCH PULMONOLGIST. HIS ASSESSMENT IS THAT I MAY HAVE IPF OR PULMONARY HYPERTENSION — THAT IT IS TOO EARLY TO TELL. HE IS CONDUCTING A DOUBLE BLIND RESEARCH STUDY USING A TYVASOL VAPORIZER TO ADMINISTER TREPROSTINIL. I STARTED TREPROSTINIL INHALATION IN MAY OF 2024.

    ONE OF THE REASONS HE SUGGESTED I PARTICIPATE IN THIS STUDY IS THAT TREPROSTINIL IS ALREADY BEING USED TO TREAT PULMONARY HYPERTENSION; THE PURPOSE OF THE CURRENT STUDY IS TO SEE IF TREPROSTINIL CAN HELP REDUCE THE EFFECTS AND DAMAGE OF IPF.

    I AM 80. WORK OUT SEVERAL TIMES A WEEK. I HAVE TAKEN PULMONARY REHABILITATION CLASSES. EACH SESSON IS 44 TIMES, 1 HOUR EACH, GENERALLY TWICE A WEEK. I HAVE COMPLETE 4 SESSIONS AND AM IN THE PROCESS OF SIGNING UP FOR MY FIFTH SESSION. NOT USING OXYGEN. GENERALLY MY OX LEVEL IS 96-100. MY NORMAL FORCED VITAL AIR CAPACITY IS GENERALLY IN THE 62-66% RANGE. MY DLCO IS LOW – AROUNG 43% CAPACITY.

    SINCE I AM IN A DOUBLE BLIND STUDY I DO NOT KNOW WHERE I AM GETTING TREPROSTINIL OR WATOR VAPOR.

  • I have been of OFEV for 2 years. I have found that stomach problems change about every 6 months. I have developed a routine that works for me.

    About 30 minutes before I take OFEV I take either 1/2 or 1 Imodium, depending how I am doing. Of course this is constipating, so most mornings I have a small bowl of oatmeal.

    I also always have 2 Imodium tablets with me at all times.

  • John K. Grubb

    Member
    April 2, 2024 at 3:44 pm in reply to: Laser Therapy Results

    Does anyone know anyone in Houston that is doing laser therapy?

    I am interested in inquiring of a treating doctor or chiropractor who does this.

  • John K. Grubb

    Member
    April 2, 2024 at 3:42 pm in reply to: Lazer therapy

    I find the comments about Laser treatment for IPF very interesting.

    Does anyone know who is doing Laser treatments in Houston for IPF?

  • John K. Grubb

    Member
    August 31, 2023 at 10:02 pm in reply to: Deep-breathing exercises

    I was diagnosed with IPF in March 2022. I immediately enrolled in a breathing rehabilitation program. It has helped a lot. The bottom line is it improves the efficiency of your healthy lung tissue. It also improves your general physical well being. And finally it focus you on the importance of taking care of yourself.

  • John K. Grubb

    Member
    August 31, 2023 at 9:56 pm in reply to: Excess mucous

    I suffered from excess mucus and phlegm my entire like. Was taking Mucinex 1200 mg two times a day. Then I was diagnosed with IPF and put on OFEV. The OFEV has eliminated my mucus problem.

  • John K. Grubb

    Member
    August 10, 2023 at 4:42 pm in reply to: Confused and scared

    I know how you feel.  Your story is very similar to mine.  I developed bronchitis in October of 2021 that took 3 rounds of antibiotics to clear.  Further more they put me on a breathing machine using albuterol; my daughter who is a pediatrician, was with me one day when I took a breathing treatment; at the end she noticed I was still wheezing and told me to take another treatment.  I ended up taking 4 treatments and I was still wheezing.  At which point she told me I had something more serious than bronchitis and I needed to see a pulmonologist.

    It took me 3 months to get into see a pulmonologist and another month to get all the test results.

    Between the time I got the diagnosis and I talked to the pulmonologist I did a lot of research and came to the conclusion I would probably be prescribed OFEV.  I am on Medicare so for me it is somewhat affordable.

    So if you can get on OFEV  do it right away.  Also, without any mention whatsoever from the doctor I learned that there are a number of breathing rehabilitation programs that are generally covered by insurance and Medicare. I got my doctor to recommend a breathing rehabilitation program and signed up for it.

    I am doing quite well.  The OFEV eliminated a bronchitis problem that I had suffered with for 50 years.  I am not on any form of oxygen.  I still can walk 2-3 miles, drive, fly, travel, and continue a normal life.

    Join the Pulmonary Fibrosis Warriors — they are probably the most knowledgable group of people (including doctors) about IPF.  Most doctors, including pulmonologist, know very little about IPF.  Pulmonary Fibrosis Warriors have developed some ties to pulmonologist that are truly knowledgable about IPF.

    I see you now live in Texas.  I live in Houston.  If you want to give me a call at 713-702-1808.

    And finely -DO NOT GIVE UP HOPE.

     

     

  • John K. Grubb

    Member
    July 1, 2023 at 11:43 am in reply to: travel while on ofev

    Last March I was diagnosed with IPF and put on OFEV 150×2.  We had 2 European trips that had been postponed due to Covid and rescheduled to July and August in 2022.  At the time I was 77.  What I did when I started taking OFEV is to take 1 Imodium, initially when I took the medicine, and after about a month 30 minutes before I took OFEV.  While traveling I always carried 2 Imodium and a bunch of GasX in my pocket.  Several times I had loose stools or explosions, but I managed to make it thru 2 14 day trips and enjoy myself.

    Whenever possible I would have oatmeal for breakfast ( it helps with the constipation caused by Imodium.  I stayed away from dairy products and I probably cut the volume of what I ate by 50%.

  • John K. Grubb

    Member
    May 24, 2023 at 4:36 am in reply to: How to relax with severe breathlessness?

    Covid overwhelmed the medical profession, especially pulmonologist.

    Look up “pursed breathing.”  It is a technique that reduces anxiety and rapid, shallow breathing

    .  In breathing classes they teach you to breath in thru your nose and to exhale thru you mouth –and when you exhale you close your lips except for a small opening and exhale 4 times longer than you breath in.  Works wonderfully to cut down on what I call breathing fear attacks.

    Good Luck

  • John K. Grubb

    Member
    April 14, 2023 at 11:15 am in reply to: PFTs and a Reduction in DLCO Number.

    Without addressing the specific issue raised here, but addressing pulmonary rehab I strongly recommend anyone diagnosed with any type of breathing problem do an in service breathing or pulmonary rehab program.  I was diagnosed with IPF in March of 2022 and started a rehab program in April; while I finished the program I signed up and am repeating it.  What I have observed is that many of the people who start the course are in pretty bad physical shape.  The rehab program works not only the lungs and breathing but the whole body.  I seen people who started the course when they were in a wheel chair, or a walker, or were winded just walking in to the place change in about 6 to 8 weeks.  They start coming in on unassisted.  Initially they barely make eye contact and really don’t even want to say hello.  Once they get on the program their whole attitude change – they come in smiling, looking forward to participating and have a better outlook on life.

  • John K. Grubb

    Member
    January 4, 2023 at 2:54 pm in reply to: Congestion

    I have suffered from excess mucus in the lungs for about 50 years, with difficulty in clearing my lungs.  About 20 years ago I discovered that if I take Mucinex 1200 extended tablets in the morning and evening the mucus would thin out enough so I could keep my lungs clear.

    Las March I was diagnosed with IPF and put on Ofev, 150 mg, morning and evening.  After about 3 weeks my mucus problem disappeared and my lungs are now clear about 95% of the time.

    Doctor has no insight and have not found anyone who can expain

     

  • John K. Grubb

    Member
    January 4, 2023 at 2:48 pm in reply to: travel while on ofev

    I took two trips to Europe this last summer while on Ofev.  Here is what I did.

    Every time I took Ofev I took a half of an imodium.

    Then I carried in my pocket at all times 2 imodium tables, 6 125mg of Gasx, and 3 baby wipes.  Once or twice I had to use the Gas and an imodium tablet.  I would also head to the restroom at the very first sign of possible bowel movement.  Was able to travel by times for 14 days each with minimum of trouble.

  • John K. Grubb

    Member
    December 15, 2022 at 3:41 pm in reply to: Can’t do PFT

    Immediately sign your father up for a pulmonary physical therapy program.  Medicare and most insurance companies will pay for it.  The one I just completed was 45 session; I usually did 2 sessions a week – Tuesday and Thursday.

    I was in pretty good shape when I started and much better shape after I competed.  However, I was amazed at the improvement of people I saw coming into the program and how they improved.  I saw people come into the program who could barely walk or talk; after several months they were coming in and doing all sorts of exercises– and they had a smile on their face.

    Also by your Dad a device sold OTC and on Amazon called an AirPhysio — it is a simple device that you blow into — it creates some resistance and air baffling in the lungs.  Do not know how good it is from a scientific point of view, but it has help me to improve my breathing number — real easy to use.

    Try to get your father to take a short walk every day- and over time extend the length.

    Talk to Doctor about starting on OFEV– once Dr. clears you to take it, you have to go thru a specialty pharmacy, qualify and have a telephone or Zoom conference with a respiratory therapist — about 6 to 8 weeks before you actually start taking the medicine.

    Good Luck

  • John K. Grubb

    Member
    September 1, 2022 at 7:04 pm in reply to: Zinc in the Role of Lung Fibrosis

    Saw my pulmonologist today for 6 month visit after being diagnosed.

    I mentioned to her that I had joined some groups with IPF and there was some exciting research out of Cedars Siani regarding zinc.  Her response was I must of read it on Google.  I responded no I had read the research report done by Drs. Paul Noble and  Carol Liang and in laymen’s terms  they had discovered that there were some compounds/conditions in people with IPF that prevented people with IPF from absorbing zinc; that IPF patients who took zinc seemed to improve.  I asked her if she could contact them and find out their recommended protocol.  She then Google the article, scanned it and dismissed it by saying it would take years of research before that became a treatment.

    My read is she is just like someone else described most pulmonologist — too busy treating COPD, asthma, etc, to really know much at all about IPF.

    As someone said earlier you have to been your own advocate.

    Meanwhile, I will keep taking zinc, follow the research on zinc and keep looking for a new pulmonologist.

  • John K. Grubb

    Member
    June 21, 2022 at 2:47 pm in reply to: Zinc in the Role of Lung Fibrosis

    Very interesting.  This article offers some hope if one takes zinc.  So I will go and get some zinc this afternoon.

    Another one to follow is the antibiotic Ambatrol (this is the trade name, not the generic).  Some researchers have found in mice taking the generic of Ambatrol results in a reversal of IPF.  This is an antibiotic  that is used to treat diarrhea and I think next time I see the doctor I will ask for a prescription.  It almost certainly would not hurt me and may help

  • From what I can tell this is prescribed in the US under the trade name of Ambatrol.  The standard prescription if 4 times a day for 7 days.

    Is anyone going to ask their Dr. for a prescription for this?

    I think I will do so — targeting to finish taking it 4 to 12 weeks before my next scheduled cat scan.

    Many medical solutions are accidentally discovered.  Baby aspirin for second heart attacks.  I live in Houston and knew the lady who sold Dr. Debakey Dacron cloth to be used by him in an experiment to sew up a hole in a heart.  About 3 years later he performed the operation on my Aunt Beth.

    My argument to my doctor is simple — at the present state of medicine I have no hope to improve.  This is an easy, inexpensive experiment that may offer some hope.  It also have virtually no downside.

  • John K. Grubb

    Member
    May 24, 2022 at 3:19 pm in reply to: Respiratory Therapy Programs

    Google Breathing Center Rhode Island and you will find the programs.

    I have been attending a rehab program two ties a week for a month and all my numbers have improved.

     

  • John K. Grubb

    Member
    November 1, 2022 at 11:28 pm in reply to: New Zoom meeting – taking the bull by the horn

    I would love to join in a Zoom conference.

    I live in Houston and even though we have the largest medical center in the world here and both University of Texas Medical School and Baylor College of Medicine are rated as Centers of Excellence, I would rate the care for IPF much the same way you have — fatalistic. Pretty much “okay you have IPF, the normal life expectance is 3-5 years so make your final plans.

    Through some of the websites I have discovered that many people with IPF live for 8, 10, 12 years.  Since I am 78 if I live another 10 years I will have lived a normal life expectancy.

    I am a lot like you — I am a take a bull by the horns guy.  I have made the decision to shape my own course of treatment.  Am I am interested in hearing from other with the same disease.

    Why don’t you pick a date and time and just schedule a meeting.

    Thank you,

    John