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    • #27434
      Marj
      Participant

      Hi, I’m new on here so please bear with me I may tend to ramble a little.

      My husband was first diagnosed with Pulmonary Fibrosis and traction bronchiectasis in April 2017 following an x-ray and CT scan.  In December 2017 he had a lung biopsy which confirmed he had Idiopathic PF.  He remained quite stable for a long time but in recent months he has felt more fatigued and breathless.  His oxygen is staying around 94%.  For the past few months he has been going dizzy upon standing up, on one occasion the doctor sent a paramedic (because of Covid) and he took his blood pressure – sitting it was fine, upon standing if fell through the floor.  Since then we have bought our own blood pressure kit and the same thing is still happening, I believe this condition is orthostatic hypotension.  He has recently been full of wind, belching really loudly, was referred to Gasto team who think this is wear and tear of his stomach – he had to have a third of his stomach removed due to ulcers 30 years ago, but when we received a written letter outlining the details of his appointment, one of the conditions listed was pulmonary hypertension.  I believe this can lead to heart failure.  Recently I was looking back over the letters from the hospital, the last appointment he had with the Pulmonolgist was Sept 2019, and the letter stated that he should be seen for a FVC test in 12 months, this hasn’t happened, I presume due to Covid.  But also in the letter the doctor stated that she would have expected him to have declined by now, therefore we should hold fire on the diagnosis of IPF, however, he could get worse then we would have to go back to the IPF diagnosis!  I’m really confused.  He isn’t on any supplemental oxygen, but is really tired all the time and feels weak.   He is permanently on Vitamin D tablets as he isn’t absorbing enough from his diet.  His diet is good, but his appetite is poor – he weighs in at 67 kg and is 6’1″ tall.

      Has anyone else experienced anything similar – it is really worrying me because I’m not sure what exactly is wrong with him.

      Marj

       

    • #27440
      Mark Koziol
      Participant

      Hi Marj, I have not experienced what your husband has been through. I do know he needs to be seen by a pulmonologist and possibly a gastroenterologist. Patients are still being seen in the office. The excuse by medical professionals of Covid being the cause of why a person can not be seen by a physician does not fly with me. Not every medical professional is working with Covid patients. Please demand an appointment with both specialists and also your primary care provider. Hopefully a proper diagnosis will come from the appointments and treatment can begin. Please keep us updated on your husbands condition and if you have any questions, please ask. Take care, Mark.

    • #27442
      Marj
      Participant

      Thanks for replying Mark  I have been back on to the pulmonary team and we have an  appointment for Wed afternoon i will let you know how we get on   I took his O2 readings today and were 97%  do you know if finger clubbing could give false readings  his blood pressure dropped to 97/60 when he stood up again so that is a real concern

       

      Marj

      • #27443
        Mark Koziol
        Participant

        Hi Marj, I looked up a research study on the effect of digital clubbing on oxygen saturation. The study used cystic fibrosis patients. There is an affect, however your reading can underestimate the reading. My heart rate used to jump almost 50 points when I stood up from a seating position. I’m not sure about the blood pressure. Another question for your appointment. Good luck on your visit, may things go your way. Take care, Mark.

    • #27448
      Carlo De Pellegrin
      Participant

      Mark, very impressed with you replies to Marj. Marj, good luck with your husband.

      Does the “KEYMASTER” blue tab on your reply mean you are really smart or just smarter than me?

      Either way, i have been on Esbriet since the end of September, 2020 and am still experiencing nausea, headaches and lightheadedness. This was substantially reduced during the three weeks I spent in Mexico from mid January. However, PM Justin decided he would close the Canadian  border and so I returned. Any comment or suggestion?

      • #27453
        Mark Koziol
        Participant

        Hello Carlo, you make me laugh. Thank you for kind comment. The key master tab signifies I am one of your co-moderators for the forum. Charlene Marshall is your other moderator. I’m hoping another member can answer your question on Esbriet. I have no experience with this medicine and don’t think I can comment satisfactory. I was on Ofev. I would suggest speaking with your pulmonologist or calling the esbriet customer service department. I hope you feel better soon. The symptoms you described are miserable to have. Take care, Mark

    • #27461
      Bill Friedman
      Participant

      Hi.

      My name is Bill, and I was dx’d with IPF last July. My Cardiologist ordered a High res CT scan of my heart, and sent me to a Pulmonologist who said my heart was OK, but the CT showed IPF. I’ve been on OFEV ever since. I hate that vile drug. It causes amazing amts of gas and diarrhea. I take an Imodium along with the Ofev, and that helps a little. The 3-5 year prognosis is scary, but so far, I still play golf 4 or 5 times a week, work out with weights 3x per week, and my O2 varies between 93 and 97. I bought a spirometer that measures FEV1 and FVC. It’s staying at 3 liters, or 100% of my predicted value adjusted for weight.’ I bought an inspirometer and am maintaining a 3300cc forced inspiratory volume.  I only drone on with this boring history because I’m new to the forum, and hope I can participate as a an IPF veteran, awaiting Draconian deterioration, but hopeful I can hang around a few years, play with my grandchildren, play golf, and not have to worry about dying all the time. The very best to all on this forum.      Bill

       

       

      • #27483
        Mark Koziol
        Participant

        Hello Bill, first of all thank you for sharing. I think it’s great how physically active you are. Your positivity will enhance your prognosis. Your contributions will always be welcome. Have a great rest of the night, Mark

        • #27538
          Jackie Kalina
          Participant

          I am an 80 year old female who was diagnosed with IPF April, 2020. I am still feeling pretty well. I am off the 150 mg x twice a day. I take 100 mg 2x a day. The quality of life was not worth the larger dose. Do not know if this will keep anything from getting worse, but it is a chance I am willing to take. Numbers have remained stable since last April. I told the doctor I wanted to cure myself. He did not laugh, but instead said a positive attitude is a MUST. Perhaps it is my age, but fear has been replaced with acceptance. Jackie

        • #27571

          @jackie-leko-kalina

          Thank you so much for sharing, and really glad to hear you’re still feeling pretty well. I also had to go down to the 100 mg of OFEV 2x/day before I could tolerate the 150. My doctor would have supported me taking the 100mg permanently though, so glad to hear your quality of life is manageable on that dose. I’ll keep my fingers crossed that your numbers continue to remain stable! Keep up the positive attitude, I have no doubt it will help you 🙂
          Take care and thanks for writing.
          Charlene.

    • #27492
      Jenny
      Participant

      Hi Mark,

      Sure you must have mentioned before with more info, but saw you said you are no longer taking Ofev. My father just stopped Ofev because he could not tolerate it. Currently they only have him only on prednisone. Did you switch to esbriet or some other medication?  Wonder what the incidence of switching from one to the other is because that seems never to have been considered by my father’s doctor.

    • #27498
      Mark Koziol
      Participant

      Hi Jenny, I received a single lung transplant. They don’t give anti fibrotic after transplant. People do switch from one medicine to another. It is the patients choice. Take care, mark

    • #27531
      Cheryl thomas
      Participant

      @billfriedman

      Hello Bill interested in where you bought both of your spirometers?

    • #27533
      Luke R Matthews
      Participant

      Yes Jenny, I could no longer tolerate Ofev and switched to Esbriet. I at least can tolerate this one somewhat better.

      To Bill, go and get a second opinion. It is easy to diagnose pulmonary fibrosis but difficult to diagnose IPF. Have you had bloodwork done for autoimmune disease? You need to get involved in your case doing research and study. I have fired three pulmonologist which does not include a large research university who all misdiagnosed my condition as IPF. I finally found a major research university which correctly diagnosed me with ILD with autoimmune features

      That is a lot of smart people looking at my series of HRCT scans and not getting it right. I am not telling you that you don’t have IPF. I am telling you to not give up. Every day is a blessing from our Creator. In the meantime talk to your current pulmonologist to see if you can switch to Esbriet. As I said I was on Ofev and I know exactly how you feel about it. I found out later that having a lot of diarrhea can deplete your pre and probiotics. You might want to look into your own research on that.

      All the best to you and Jenny. You as well, Mark.

    • #27535
      Donald Salzberg MD
      Participant

      @mark-koziol

      Hello Mark:

      I agree with Carlo‘s assessment of your brilliant replies. I have always been impressed with your advice to this incredible disease. As a physician I need to be careful about making any suggestions to anybody’s therapy because everybody responds so differently to these medications.

      Marj—I wanted to make a comment regarding pulse oximeters.  Ones that are available at the drugstores can be quite inaccurate or as the ones that are used at the hospital level are much more accurate. There are listings of the best ones to purchase that will give you the most accurate readings. Just having a low battery will also mess up the reading. I do not wear nail polish (!!) But that can also cause an erroneously low reading.

      Thank you Bill for your comments on using a Spirometer and Inspirometer. I will look into those myself as well and if you’re back on this post could you let us know what unit you bought.

      i also agree with Luke to question the diagnosis of IPF. I was a perfect set up for Hypersensitivity Pneumonitis. The plan was for me to start moderately high doses of prednisone for over a six-month period. Before I did that I pushed hard for an open lung biopsy and my diagnosis of IPF was made. I feel fortunate that I was an advocate for myself but many people have gone years without the right diagnosis. Prednisone has a lot of side effects in the long run I’m I’m happy not to have needed them.

      I have been on OFEV for 2 1/2 years with mild side effects such as diarrhea and fatigue. I suspect my fatigue which has worsened to be due to the disease more than the medication. Fatigue is listed as one of the main symptoms of this condition. I am curious about comments as to whether they’ve experienced more and more fatigue over time.

      I also struggle with a lot of hoarseness due to mucus buildup in my throat. I have tried Mucinex which didn’t really help. I have read somewhere that mucus production is associated with this condition. That being said I am wondering if anybody has had experience with a product called Air Physio. It apparently works with obstructive lung diseases (IPF is a restrictive lung disease) but they informed me that this could help with mucus production in IPF. It is a device that uses positive air pressure (PEEP). I would love to hear any comments on this as well.

      Mark—Thank you for all that you do.  Although my oxygen saturation sits at 95-96% And my pulmonary function tests have been stable— I feel that I get winded much quicker now than a year or two ago and I wonder if that indicates a worsening of my disease or am I just getting older??

      Don Salzberg MD

    • #27539
      Carlo De Pellegrin
      Participant

      Dear Dr. Salzberg,

      First things first! Do your friends call you Doctor Donald or Donald Doc?

      Was you initial comment about my brilliant assessment or about Mark’s brilliant replies.

      Was your comment about nail polish meant as your best medical advice or were you addressing the ladies on the site?

      Seriously, I would love some feed back on exercise and side effects of Esbriet. I have just had my first virtual meeting with my new respirologist who suggested that longer and less elevation on the treadmill is better and so I am now 35 minutes at level 2. I do get a wee bit of walk through angina, but very manageable. I am working towards 60 minutes by the end of March. I am really tired first thing in the morning and can only get my butt down to the treadmill 3 or 4 times a week. I have an oximeter that I bought on line but no idea how accurate it is? Any suggestions for a quality one. Any idea if you can get a golf yardage watch with one built in? ( I play at Clublink, Station Creek is my home course ).

      I do a series of stretches a couple of time a week, but need to get the week filled up with at least 3 treadmill and 3 stretch sessions.

      I would love to know the difference between a spirometer and an inspirometer, what i would do with them and suggestions as to a quality name brand. OK, I’ve pestered you guys enough.

      Be well all, Carlo

       

    • #27542
      Donald Salzberg MD
      Participant

      Hi Carlo:

      My friends call me Doctor Don. I thought what you wrote was funny. I was complementing Mark’s replies in general. And your assessment was of course brilliant

      I was making a point about nail polish. Yes mainly towards those who wear polish as to not be “sexist!”  I think even clear nail polish (I don’t do mani/pedis) has an effect on the O2 sat reading. During surgeries Anesthesia removes the nail polish if present to get more accurate numbers.

      I’ve avoided Esbriet primarily because I’m a sun worshipper and Esbriet makes the skin very sun sensitive. From what I’ve read the diarrhea and fatigue is worse than OFEV but i could be wrong. OFEV is taken 2x a day and trying to take anything 3x a day has compliance issues.

      I’ve never been into exercise, gyms etc. I should be. I used to play a lot of tennis and went skiing. From everything I’m told exercise is great for muscles and cardiac health but I was told the PFTs does not improve. In no way am i saying don’t exercise—I’d love to have the bug. I try to walk often (3-4 miles) but I’m not as inclined when I’m in CT.

      if you look up best pulse oximeters on Google it lists the best. The ones at the hospital are likely $1000 so not necessary. Also make sure your fingers aren’t cold.

      a Spirometer measures certain pulmonary function tests (PFTs). I spoke to the company that makes the spirometer. He was clearly telling me that if you are getting PFTs on a regular basis (2-3x per year) a spirometer provides little additional info as the PFTs measure (in more detail) what a spirometer does. It is not a therapeutic instrument—my understanding is it tells you data. If I was not getting PFTs (we all should be Getting PFTs Covid or no Covid) then a spirometer would give me a sense of a trend in my FEV etc.

      An inspirometer I believe helps push air in and out but I don’t have much info on this. I’m still intrigued by this Air Physio unit (i think cost is $60-75). It is supposed to help break up mucous. I don’t really have a cough thank G-d.

      I will pursue questions on the above items. Mark can you comment on your experience with regards to the pulmonary benefits.  Also if someone (like myself) uses CPAP—how do you use CPAP and oxygen (if needed) when you sleep???  I think every/most patient who has ILD (fibrotic/interstitial lung disease) should be checked for GERD and sleep apnea

      Carlo thanks for reaching out  KEEP BREATHING

      Don Salzberg MD aka Doctor Don!!!!

      • This reply was modified 1 month, 2 weeks ago by Charlene Marshall. Reason: formatting to remove code
    • #27548
      Donald Salzberg MD
      Participant

      Luke:

      i totally agree that often IPF is misdiagnosed and many people are subjected to incorrect therapy and missing out on OFEV/Esbriet. A HRCT (High resolution CAT scan) will of course show the fibrosis but my scan was “suggestive of Hypersensitivity Pneumonitis (HP)” which was a wrong diagnosis for me. The treatment of HP is so very different than treatment of IPF. Having an open lung biopsy is critical. Bronchoscopy is typically useless for IPF as the tissue needed is from the base of the lung 🫁 and you cannot get that far out with your basic bronchoscopy. So as uncomfortable as the lung biopsy was (the IV Dilaudid helped)(2-3 days in hospital)—I’m a big fan of getting this for a definitive diagnosis. I wasn’t really short of breath or coughing (fatigue) so treatment doesn’t make me “feel better.”  But we all need to be an advocate for oneself. I knew enough to pursue the next step. I’m glad you have found the correct diagnosis.

      Doctor Don

    • #27555
      Bill Friedman
      Participant

      Charlene, ,
      Got both on Internet; Hudson RCI inspirometer, and Mir Smart One Peak flow and FEV1 meter. Both inexpensive. The Mir device reads out on my IPhone with a permanent record of daily results. Really handy, and simple to use. Love your posts. Bill

      • #27570

        So great to hear Bill, thank you for sharing! I’m glad both are seemingly effective and easy to use to track your readings. Great news 🙂
        Char.

    • #27557
      Marj
      Participant

      Hi – thanks for your comments Dr Don.  My husband doesn’t wear nail polish, clear or coloured!, I understand what your saying about the pulsoximeter – I tried it on myself and it reads 99% so I don’t think there is a problem with the actual instrument, I just wasn’t sure if him having clubbed fingers affected the reading.

      We went to the pulmonologist a week ago – his FEV tests showed his breathing hasn’t altered “much” it was 85% now it is “around” 80% havent seen the actual result yet, still waiting for the letter.  I suppose his problem is much the same as everyone else – the fatigue (and dizziness).  He told us he can’t have any medication because of the side effects (he already has stomach problems from having one third of his stomach removed 35 years ago) I requested another HRCT scan to see the progression and was told he didn’t need one as the FEV indicated the progression of the disease and it is quite stable.   He just generally feels exhaused most of the time – he pushes himself to keep doing the jobs he used to but struggles to keep going.

      My concern was whether this is taking an effect on his heart.  When I asked the question to the pulmonologist he told me it was a good question, but didn’t answer.  He basically told us that he was only interested in his lung functions.

      I don’t know why the previous pulmonologist said to “hang fire with the diagnoses of IPF” because he isn’t at deaths door yet when I hear of so many other people staying stable for years.  He did have a lung biopsy which confirmed IPF so why make that comment – I though the biopsy confirmed the diagnosis or am I wrong?  That initial learning of 3-5 years is scary but then on this type of site it is such a relief to find so many people live years and years longer.

      Marj

    • #27560
      Carlo De Pellegrin
      Participant

      Doctor Don ( if I may), Thank you so much for your reply. It is always so much it seems I don’t know.

      My oximeter is exactly like a coupe in the ‘best’ list on google…meaning nothing to me as it came directly from China, unknown to me until I received the shipping status. I guess I can test it the next time I’m getting a covid test or in to see my doc. I have searched all I can today about the inspirometer and found a couple of articles on how these devices ( seem like at least a couple of different ones ) to help teach the lungs to breathe deeper…assume that’s a good thing. Nothing I could find on “mso-space run: yes;” I have asked the doctor, indirectly, and waiting for a reply.

      I am on Esbriet even though I am a golfer, that could be a bit of a stretch, but I am on the course three times a week. I was in Mexico in mid-January or three weeks until Justin conned me into coming home. I wore a long sleeve sun shirt the first day and just lathered up with sunscreen the other days and was fine. Just saying as I did not want to be running off the course being on EFEV.

      any and all info appreciated from all!!

      Keep breathing, Carlo

      • #27693
        Jackie Kalina
        Participant

        Is it your husband that has IPF? AND you are doing the scouting and research? BRAVO to you. My husband does not seem at all interested in this. I guess he wants to live one day at a time. There seems like so much to learn and I’m too tired to do it. Research is my style, not his. I feel I have a good doctor. I still feel really well except for tiredness and that comes and goes. Again, how wonderful of you to be an advocate. Jackie

    • #27574
      Donald Salzberg MD
      Participant

      Good AM

      Marj regarding the heart all lung diseases CAN BE associated with right sided heart disease. The right side of heart pushes blood to the lungs. A Cardiologist with use of an echocardiogram can determine if there is pulmonary hypertension (elevated blood pressure) in the vessels leading to the heart. I recently had a few bouts of Atrial Fibrillation possibly from this although it runs in my family.

      the FEV is what is followed on the PFTs and studies so if those values are stable I tend to agree another HDCT will not add much. Another important parameter is the DLCO which measures diffusion of gasses in the lung. When that number drops it explains why lung patients get so easily winded.

      As for the OPEN lung biopsy the diagnosis of IPF is fairly iron clad to my knowledge assuming it was made by a reputable pathologist. A diagnosis of IPF without this biopsy could be questionable. My pulmonologist encouraged me to see my Cardiologist to make sure I have no right-sided cardiac issues such as pulmonary hypertension etc. An FEV that is 80% of normal is fantastic but how is his O2 saturation?

      Marj I spoke to my pulmonologist yesterday and asked him about exhaustion/fatigue. He couldn’t tell me if it’s the IPF vs the OFEV vs both. I was never sick a day in my life but about a year before my diagnosis I started to feel (mostly every day) by noon a sense of exhaustion, brain fog, palpitations, aches everywhere and loss of appetite and zest for life. I saw 40+ patients a day for 33 years. Never ever called in sick. All of a sudden I’m cancelling 20 patients a day and sometimes surgeries. Thought i was a head case. No lung symptoms etc. Then all of a sudden i thought i was having an asthmatic attack (never smoked; no lung history). My point here is even as a physician I was clueless for 4-6 months that this stemmed from a lung problem.

      I freaked reading about the 3-5 year life expectancy. That’s antiquated based on the days without anti-fibrotic meds (OFEV and Esbriet). And G-d willing new meds on the horizon. I’m excited about stem cells. My pulmonologist told me over and over these meds are game changers and lung transplant options ha e improved greatly. OFEV was in Japan i think 5-7 years before it was finally approved by our loving FDA (DONT get me started)!!

      Carlo thank you for your info. I’d like to look into the Inspirometer. A company did call me back. I also am interested in the Air Physio unit to reduce mucous in lungs. My throat mucous/hoarseness as per my pulmonologist is more likely related to CPAP/post-Nasal drip (I’ve been told I’m a bit of a drip)!!  He suggested a Flonase mist type of spray. I again think sleep apnea/GERD etc play a huge role in ILDs (Interstitial lung diseases). Regarding OFEV I have had minor issues with it. I take it with Zofran 8mg after i eat late mornings. I think diarrhea is more common with Esbriet from what I’ve read but i may be wrong as I’ve never used Esbriet.

      As the officer on Hill Street Blues would say: “Let’s be careful out there.”

      Doctor Don

       

    • #27575
      Marj
      Participant

      Hi Dr Don

      Many thanks for your response.  His lung function appears to be good 80% FEV and his O2 is 94 – 95%.  this is why I wondered if his symptoms could be related to his heart rather than his lungs.  I don’t have the breakdown of his spirometry tests to know his DLCO.  He is tired most of the time – even within the first half hour of getting out of bed.  They told us at the outset that he wouldn’t be on either of the meds for IPF because of the side effects, so considering he isn’t taking any medication and is 4 yrs since diagnosis he is doing really well, he has last a further half stone in twelve months, he is only 67kg and 6’1″ tall so is really underweight.  Just wish we could do something about the fatigue.

      Marj

      • #27694
        Jackie Kalina
        Participant

        Thank you Dr. Don. When you talk, I LISTEN! I now understand the reluctance of physicians to make a firm diagnosis, but I learned and was diagnosed in 5 days. Though at one time the pulmonologist said he was 80% sure I had IPF. I couldn’t understand the hesitation to be firm on his diagnosis. Every time I see him I think he may tell me they have made a mistake. It will be a year in April from my initial diagnosis. I have remained stable and have few symptoms other than extreme fatigue on some days. I am taking 100 mg a day. I could not live and will not live with the horrible side effects of 150 x a day. Are there any studies to affirm 100 mg x a day will be efficacious? THANK YOU again for your observations and help. Jackie

    • #27702
      Marj
      Participant

      Hi Jackie,  Yes it’s my husband, he doesn’t do technology, I don’t think he knows where to switch the computer on!  I keep trying to figure out what is going on with his illness, we hardly ever see a doctor, and the last pulmonologist told him to hang fire with his diagnosis until he gets worse! which I couldn’t believe, this left him really confused and as he has had a lung biopsy to confirm IPF I though that comment was a little silly (for want of a better word).   He does keep quite well apart from the tiredness and now he bruises really easy – if he gets a pain in his little finger I’m googling to find out if its related!

      Look after yourself Jackie, I think excersise is a good thing with this illness, he walks the dog everyday, usually about 2 miles and he likes to hoover and mop floors while I’m at work.

      • #27805
        Jackie Kalina
        Participant

        If he likes to hoover, you must be English or Canadian. In the US we vacuum. That makes me to out of breath. Wishing you all well. Jackie

    • #27804
      Jackie Kalina
      Participant

      So interesting to hear from you. I am an 80 year old woman coming up on a year without symptoms. I am very tired these days and go in for breathing tests in April. My doctor who has done biopsy (not thru lungs) said he was 80% sure I had IPF. He can hear the crackles or whatever. He was on Pulmonary research at UCLA for years and I am sure he has seen it all. He is very positive. His comment was to go on and live my life and let him do the worrying. I am afraid to ask if the 100 2x day is even helping. Please let me know what your husband finds out.
      Thank you, Jackie

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