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  • tammyjbell1972

    Member
    June 24, 2021 at 5:38 pm in reply to: IPF without cough

    Anonymous,
    <p style=”text-align: center;”>I am 49 years old and 207lbs. When you say ratio is low what does that mean?</p>

  • tammyjbell1972

    Member
    June 7, 2021 at 12:05 pm in reply to: Heart/pulse rate

    My symptoms started suddenly in September. Since then I have had 3 CTs, a VQ scan, Heart monitor, 2 echocardiograms and a tredmill test. There is absolutely no signs of PAH. I have seen 3 cardiologist to rule it out. My rapid heart rate started and then 2 days later shortness of breath. My heart rate is fine unless I am walking or standing up. I have no other symptoms. Just the feeling of the not being able to take a deep breath and heart palpitations. I think they have a lot to do with having taken a blood thinner for 6 months. It has affected my BP. Plus my cardiologist said that I did not have significant regurgitation in any of my valves which is a good thing because normally if you have significant regurgitation it means a big possibility of PAH. Also most would find thier heart rate elevated while resting as well and having difficulty lying down. I am most sure I dont have PAH. Although I am worried about my lungs

  • tammyjbell1972

    Member
    June 6, 2021 at 7:37 pm in reply to: Heart/pulse rate

    Do heart rates go up and down with IPF?? Example: my HR only goes up when I move, stand up and walk. It goes back down immediately when resting or standing still. Down to as low as 54 sometimes.

  • tammyjbell1972

    Member
    June 3, 2021 at 5:18 pm in reply to: Heart/pulse rate

    I noticed my heart rate goes up even if I just roll over in bed. Or just cough, or move a little. I can be sitting and if I even move my leg it goes up. It comes back down quickly when I stand still or sit. It goes down to as low as 54 sometimes. I feeling like flip flops as well. My pulmonologist says everything is normal. What is normal? What is the most important numbers on a PFT test?? DLCO?? The only abnormal thing I found was RV/TLC. The predicted was 35 mine was 26 my pulmonologist said that means I have a great diffusion rate. I dont understand the numbers nor %.

    • tammyjbell1972

      Member
      June 30, 2021 at 5:45 pm in reply to: Heart/pulse rate

      Charlene, were your 02 stats low all the time? Sitting, walking, moving? Sleeping? May I ask how low??

    • tammyjbell1972

      Member
      June 7, 2021 at 6:50 pm in reply to: Heart/pulse rate

      When I hear about shortness of breath, I always ask, what people mean by that, exactly? Like does it feel like omg I’m breathless? Or like I can’t take a deep breath? Or combination? And do most people feel like I have to stop to catch my breath? I know all people are different and it progresses differently but do most find it hard to breath almost from the beginning?? I guess it’s hard to even look up breathlessness because it is described in so many ways. But I most often hear people say I am out of breath, or I have to catch my breath or even I don’t do much because I can only walk so far before I have to stop to catch my breath.

  • tammyjbell1972

    Member
    June 3, 2021 at 4:59 pm in reply to: PFTs and a Reduction in DLCO Number.

    I am in the US and to be honest I do not know which % or numbers are the most important on a PFT. My pulmonologist never explained my 2nd PFT test. The only part I seen marked A for abnormal was the RV/TLC amd mine was a 26 and predicted 35. How I understand it is that I don’t have enough left over air volume????? I don’t know. My pulmonologist said the test itself was great. I can post the rest of the results soon. Can somene help explain all this to me? What numbers are the most important for diagnosis and what do they mean???

  • tammyjbell1972

    Member
    June 2, 2021 at 7:22 pm in reply to: Gaining weight

    Why does PF IPF make you lose weight?????

  • tammyjbell1972

    Member
    May 26, 2021 at 2:20 pm in reply to: New to discussions questions about cough

    Would you please share uour anti inflammatory diet?

  • tammyjbell1972

    Member
    May 26, 2021 at 11:28 am in reply to: Heart/pulse rate

    How long did it take for a diagnosis? What was the test they jad to do to diagnose PF? I see so many tests they can do. What are my chances of having a transplant if needed?

  • tammyjbell1972

    Member
    May 18, 2021 at 12:44 pm in reply to: Heart/pulse rate

    Can Pulmonary Fibrosis cause high and low heart rate????

    • tammyjbell1972

      Member
      May 18, 2021 at 10:39 pm in reply to: Heart/pulse rate

      @christie-patient

      It is strange to me because i don’t ever feel breathkess. I mean i feel likeni breath heavier at times but never breathless. My heart rate goes up after eating. It feels like i cant take a deep breath. My symptoms started suddenly 7 months ago. I was put on a blood thinner and after the 2nd week i was sitting on the couch and my heart started beatinh so fast and so hard. 2 days later i felt shortness of breath. My chest felt tight. Afyer about 2 months the tightness went away and i dont feel my heart beating fast onky after eating. I know.its beating fast because of my watch. The shortness of breath has gotten a lot better just that deep breath is sometimes hard to take. Ive had 2 spirometry tests done. Tjey had me run up and down 2 flights pf steps and my 02 stayed at 95%. I do not have a cough. I jave been told all 3 cts i have jad done ove the last 7 months says my lungs are great. I have had a VQ scan and an xray as well. Im so confused

  • tammyjbell1972

    Member
    May 18, 2021 at 12:44 pm in reply to: Heart/pulse rate

    My HR elevates only when I stand up and walk. It reduces quickly when I sit. Sometimes to low 50s. My oxygen goes up when i stand and walk. The only time it has gone down is during a tredmill tsst.

  • tammyjbell1972

    Member
    July 3, 2021 at 1:29 pm in reply to: Drinking Wine with Pulmonary Fibrosis.

    Charlene, does the consumption ever make you feel like your heart races?

  • tammyjbell1972

    Member
    June 30, 2021 at 6:23 am in reply to: Inhaler Use for Pulmonary Fibrosis

    Did this work for you? I just feel like I can not take a deep breath. Hymalanian salt???

  • tammyjbell1972

    Member
    June 22, 2021 at 5:32 pm in reply to: IPF without cough

    I had a spirometry test done but my pulmonologist never explained it to me. I’m not asking for medical advice just wondering if anyone knows about numbers? FVC actual:3.78 predicted:3.68 ,%predicted:103,CI range:2.96. All these columes will be in order:

    Actual, predicted, % predicted

    FEV1:3.25,2.92,111,2.32

    FEV3:3.75,3.01,125,1.77 4.25

    FEV/FVC:86,80,108,71

    FEF25-75LS:4.02,2.85,141,1.58

    PEFRls:7.05,6.92,102,5.15

    FET(sec):3.26

    MVV l/m:131.1,99.7,131,48.7,150.7

    TLC:5.05,5.20,97,4.12,6.28

    RV:1.27,182,70,1.05,2.06

    RV/TLC:26,35,71,24,46

    FRC:2.22,2.91,76,1.85,3.97

    TC:2.83,2.59,109

    ERV:0.95,1.09,87

    VC:3.78,3.68,103,2.96

    DLCO:28.57,25.00,114,15.52,34.47

    DLCO[HB]:SAME AS ABOVE

    VA[BTPS]:6.06,5.20,117,4.12,6.28

    DLCO/VA:4.71,4.81,98,3.35,6.31

    THIS WAS DONE MARCH 18 THIS YEAR

  • tammyjbell1972

    Member
    June 22, 2021 at 4:40 pm in reply to: IPF without cough

    May I ask how far your oxygen drops when walking?? I have a pulse oximeter but I was told that when your walking it is not accurate because I’m moving or moving my finger?? I was told you had to be still.

  • tammyjbell1972

    Member
    June 14, 2021 at 5:41 pm in reply to: David Swain – a brave fight against IPF

    I am so sorry for your loss.

  • tammyjbell1972

    Member
    June 14, 2021 at 5:34 pm in reply to: Severe neck and shoulder pain

    What causes the pain in the neck and shoulders? What does it feel like

  • tammyjbell1972

    Member
    May 26, 2021 at 11:34 am in reply to: Digital Clubbing in Pulmonary Fibrosis Patients

    May i ask how they seen the honeycomb feature? What test revealed it?

  • tammyjbell1972

    Member
    May 21, 2021 at 6:42 pm in reply to: Franklin Price ♥️

    I am so sorry for your loss. You are in my prayers.

  • tammyjbell1972

    Member
    May 18, 2021 at 5:25 pm in reply to: Has OFEV been effective in slowing your progression?

    How do they determine at what stage of the disease can you be considered for a transplant??

  • tammyjbell1972

    Member
    May 14, 2021 at 12:21 pm in reply to: Digital Clubbing in Pulmonary Fibrosis Patients

    When does clubbing start? I mean I am sure everyone is different but would you or could you notice it right away?

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