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    • #28977
      Terry Neu
      Participant

      Has anyone out there have or had a shortness of breath, tightness of feel in the lungs but normal oxygen readings? My readings are normally in the mid 90’s and can get to the mid 80’s on my daily walk. I was diagnosed in March of 2019 with IPF and see my Pulmonologist twice a year. He just tells me I have not declined since my last visit and I will see you in 6 months. He doesn’t give me any numbers or explain any of the results. I’ve never asked for numbers because I don’t know what to ask for. So one of my hobbies is trying to decipher all the abbreviations that appear on these forums.  My breathing tests have stayed the same for these last two years. I have been on ofev for the last 2.5 years and never really had any problems with it  (which is why I never wrote because I felt guilty ). I have no one to talk to about my IPF other than reading these forums. The support group I was in stopped because of Covid. Thanks for being there.

    • #28992
      Bill S
      Participant

      Terry,

      Thank you for sharing.  I was Dx’ed in January 2021 and began 100 mg of Ofev without issues and have graduated to 150 mg, again without issues. Just recently I awoke at 1:00 AM feeling as though I was in a vacuum with no air.  I walked around for an hour and regained my breath, but felt labored.  I actually went to a CVS and bought an oximeter at 2:00.  It registered 98-99?? I went home and slept sitting up the remainder of the night and felt OK the next day.  I have the same issue with my pulmonologist; a feeling of benign neglect.  Telehealth doesn’t work for me.   Do you use a spigometer (sp) to measure lung volume?  That is going to be my next purchase.  There has to be some method of measuring one’s progress or regress.  I feel the same you do, Terry, if it wasn’t for this forum I would be completely in the dark.

       

      • #28993
        Terry Neu
        Participant

        Thanks, Bill.  It sounds like your experience is pretty similar to mine.  No, I do not have a Spigometer and you mentioning it is the first I’ve ever heard of one.  I will ask about it at CVS the next time I’m there.  One of the bad things about this disease, you never know when an episode is going to happen.  Then soon after you’ll be coasting along again.  Thanks for your reply.

         

        • #29020
          Neha
          Participant

          Hello Terry and Bill,  Measuring progress regularly is an important way to gauge how you are doing, especially if you are trying a new medication/supplement or a breathing technique etc. Here is a link to 2 simple ways to measure your progress including charting your oxygen saturation levels at various times daily and by using the 6 minute walk test (6MWT) at home: https://pulmonaryfibrosisnow.org/basics-old/how-to-measure-your-progress/#measure Hope you find it helpful

    • #28994
      Frank
      Participant

      Hey guys I am in the same position as the two of you with the exception my doc sees me every 3 months. I am on Ofev as well and no side effects. My bloodox is in the 90’s and sometime the high 80’s. I do have the shortness of breath as well. Didn’t know you could purchase a spirometer but will do that. I do get a PFT every time I go so as to see if there is any decline in lung capacities I would imagine. I am limited in what I can do physically, lifting and walking long distances as well as a change in my voice , but feel like you as far as the guilt. I read some distressing stories and would hope that I do not progress to that point. I wish you guys well and please do not give up the battle.

    • #28995
      Ben Robinson
      Participant

      Sounds like Pulmonary Hypertension to me   Classic symptoms that I have experienced. Most Pulmonologists miss it too.  Unfortunately a right heart Cath is needed to precisely diagnose. This is often caused be lungs also or calcified arteries and veins or both.

    • #28997
      Liam Mullaney
      Participant

      Hi everyone,
      I was diagnosed with IPF in 2017 and on OFEV since 2018. My IPF has progressed to the point where I need a lung transplant. The key things to watch are FVC and DLCO, if these are declining every 6 months. These are measured when getting PFT, pulmonary function tests. I’m on oxygen pretty much all day varying from 4L to 8L depending on level of exertion. I use my oximeter to figure out how much oxygen I need. I also use a spirometer to check my FVC and the results are transmitted to an App called PatientMpower which is accessible by my respiratory consultant. The worst thing now is the breathlessness and the constant coughing. Stay safe everyone

    • #29000
      Sam Gilmore
      Participant

      Sounds familiar Terry except I do have my family to talk to. Im 74 years old. I have had IPf for about 4 years. am on oxygen 24-7 I went from 20L oxygen to now 7L. If I do anything I become short of breath. I haven’t been out of my house in year and a half. My doctors visits are all virtual. I cant even take a shower now with out becoming breathless down to 65-75 Oximeter reading I am usually 90 -98 at rest. Any way I guess we are all in the same boat. This IPF is merciless. We are all waiting for the ultimate out come. Everybody take care and try and keep a good attitude.
      My faith in Jehovah God and his word and my family give me comfort. Take care Be safe all.

      • #29008
        Kathryn Bottaro
        Participant

        My fiancé was a candidate for lung transplant and his level went down to 60. He was on 6 liters. That’s all it went up to. He had one more test to go before getting transplant and he died of cardiac arrest. I don’t understand how it went down that fast snd he was laying in bed. I called ambulance. When I let them in he was unresponsive. I blame myself for not getting ambulance sooner. He was 73. Please get all the info you can.  Tell your loved ones how much you love them.  Hug them. I’m so lost I want to die too. As far as God.  Ok don’t get what his plan was. I want him back. Not fair

        • #29013
          jim nox
          Participant

          Hi Kathryn,

          I can feel your pain and self-blame through your writing. Your love and care for your fiance’ are apparent. I can imagine that it is worse because your marriage never got to “be”. Not your fault about his sudden decline. It can happen with this disease. It probably progressed rapidly to a much more deadly disease called “Pulmonary Hypertension” which can quickly lead to heart failure. Nothing you could have done.

          While your grief is understandable and normal, I urge you to “hang on and persevere” as the darkness will slowly lighten with the passage of time. Twenty years ago, I lost my teen-age bride of 44 years. The pain was intense – – like a bear sitting on my chest, or my heart being replaced with a ladle of hot molten lead. It took a year for the pain to become bearable and the crying jags to abate, and another two years for me to begin to emerge from that lonely-lost feeling and resume a “normal” life.

          Stay strong and wait for the storm clouds to clear. Or better still, join a “grief group” of those who recently lost loved ones. You can find these groups through funeral homes, churches and therapists. Maybe hospital social workers also.

          All my best wishes and condolences,

          Jimnox

    • #29010
      Heather
      Participant

      Hi Terry – What jumped out to me was that your doctor doesn’t seem to be giving you the information you want/need to feel informed about your condition. I would encourage you to have a conversation with your doctor about that. Tell him/her you want to learn more and what level of information you need. If nothing changes perhaps you could find someone who is more willing to listen and spend more time with you. My husband has PF and when she sees his pulmonologist he goes in with a list of questions and comes home with all the numbers (he keeps a spreadsheet). Be your advocate. And stay in touch her. I find this group so helpful.

    • #29014
      Kathleen Ryan
      Participant

      Hi Terry. I’m so sorry you’re not getting answers from your doctor – I know that can be very frustrating. I have the same issue with oxygen. The reading can be 94 or 95 while I feel a terrible chest tightness. Doesn’t make sense because I would bet the farm it had fallen to the 80’s. It does go to the mid 80’s when I walk or exert myself.

    • #29016
      Terry Neu
      Participant

      Thank you everyone for your responses. Kathryn, I am so sorry for your loss, you will be in my thoughts and prayers. I will ask the doctor for numbers next I see him in October. Last time I saw my Pulmonologist he had me do a 6 minute walk test and I passed with flying colors. I told him my oxygen can sometimes get down to the mid 70’s if going up a hill (not a whole lot of steep hills in northern Indiana)but tapers off when hitting level ground again. So luckily I am not on oxygen yet. I do have some support system with my family but being as I have not declined much nobody is in a panic right at this moment. I am soon to be 64 in August. I only mention that so you have some idea of my age bracket.  Once again thanks for your responses.

    • #29027
      Marianne
      Participant

      Hi everyone –

      I was diagnosed with IPF in May 2019.  All my PFT and 6 minute walk tests were good until Feb. 2021.  On those tests I drastically dropped my DLCO levels and 6 MW test I dropped oxygen to 86.  Doctor prescribed oxygen on exertion – 2 lt.  I finally got a POC (portable oxygen concentrator) which I take when I go on long walks or to the gym to exercise.  I see my pulmonologist as well as primary care doctor every 6 months.  Have blood work every 3 months and PFT and 6MW tests every 6 months.  I always take a list of questions to all doctor visits plus I keep in touch with my pulmonary doctor by email and phone as needed.  If you have a doctor who is not listening to you, please find another doctor who listens to you and answers your questions.  Mine is very knowledge concerning IPF.  Also, if you can, it helps to take someone with you for office visits.  I realize this might not be possible right now because of Covid restrictions.  I live in Ohio and mask orders have been removed except not at hospitals and doctor offices.  Hope this helps everyone.  Have a great day.

      Marianne

    • #29034
      patrick rogers
      Participant

      Apparently we all have the same questions regarding oxygen levels and what appears to be available. My physical therapist says that although the blood has the high level. the rigidity of the lung tissue prevents it from being resupplied quickly and therefore results in the severe drop in level. The level returns but it simply takes longer. Makes sense to me but I have no solution.
      On a separate subject I have asked my doctor to read and comment on the Baylor study regarding Nexium and its possible positive effect on actually reducing the fibrosis in the lungs. He suggested that we start with 40 mg. to see if there is any effect. I plan to start tomorrow and will keep a diary in case there is any actionable result. I would like to know if anyone else has any experience with this treatment or has tried it. I’ll keep you posted on my results or lack thereof.

      • #29039
        Anonymous
        Inactive

        I would love to hear any updates about your experience after taking Nexium, i have heard interesting things about it and read a few good study results!! Good luck!!

    • #29037
      sherman jones
      Participant

      Hi I noticed a number of people on Ofev. Just wondering when or what determines an Rx for the medication. Is it a money or tolerance issue?

       

    • #29042
      Bill S
      Participant

      Hello Everyone,

      Thank you all for sharing your experiences.  It seems we all are living in various levels of medical information vacuum.  Liam, which Spirometer did you choose to use?  Some appear to be more sophisticated than others and more expensive.  I don’t think I need a lab quality type but I don’t want a toy either.  I like the sound of yours in that you can store the results on your phone app.

      Nexium.   I am on my first dose of it; OTC.  The label says its 20 mg. and is for 14 days ( 14 caplets).  Does anyone know what to do when 14 days is up?  The label says not to exceed 14 days unless directed by one’s MD.  I haven’t received any directions.  Neither do I have my latest quantitative blood test results for liver function other than “they are in the normal range…”.  I am on the verge of exploring  another IPF clinic.

       

      • #29083
        patrick rogers
        Participant

        Bill I’m 82 years old and less worried side effects than I once was.  Nexium warnings are numerous and concerning so I asked my doctor to read and evaluate the Baylor Houston study.  He agreed to prescribe 40 mg. for an indefinite period and I’m on my third day.  So far no marked change.  In two weeks I have an appointment in Dallas at UTSW to be seen by a doctor working for John Fitzgerald.  Their goal is to remove the term “Idiopathic ” and seek a cause and alternative illness that, hopefully, can be cured.  I’ll share what I learn if anything.

    • #29046
      Liam Mullaney
      Participant

      Hi Bill,
      The spirometer is from a company called MIR, Medical International Research and the product is called Spirobank Smart.

      Stay safe and well
      Liam

    • #29071
      Bill S
      Participant

      Thank you Liam, I will certainly pursue your lead.  Also, Neha, thank you for sharing the lead to the progress chart.  This is all very helpful.

      Bill

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