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I strongly suspect IPF

Posted , 3 users are following.

paul22133
paul22133

For about three years now I've been having shortness of breath, which would come and go . When I started to suspect something more serious I went to the ER, they found nothing, but they didn't even do and xray and said I was fine .The symptoms subsided till recently, now they are bad, so I went to the ER again and this time they did a chest xray, found nothing and said I was fine, Btw, I have a heart condition and they ruled out CHF . I googled my symptoms and found IPF . I have not been diagnosed with IPF, as of now . Here are my symptoms, tell me what you think . Shortness of breath when doing anything, but sitting still, a persistent dry cough, fatigue when just walking short distances, wheezing at night, plus my breath shuts off when I doze off and am finding it hard to sleep. These symptoms are getting worse daily and , of course, I'm worried . I'm seeing my GP Monday, but just might call a rescue . They have a IPF wing in the hospital near me, so I'm going to go there . Okay, thanks !

1 like, 13 replies

13 Replies

  • jazztrain
    jazztrain paul22133

    Posted

    Hi Paul22133

    An IPF is something you cannot diagnose yourself; however Shortness of Breath with a persistent dry cough are two of the main symptoms of an IPF! BUT it may not necessarily be so that this is your diagnosis, you will need to have a CT scan to confirm as a simple Chest X-ray is not difinitive of this condition and it will depend on what the Thoracic Chest Physician thinks. If confirmed they may put you on a drug called 'Pirfenidone' but your alcohol intake will be limited to just 13 units per week and as the drugs take away the immune system you will have to wear a strong Sun Tan Lotion when the UV index gets above '3'?

    I wear a Hat and gloves even in the height of summer, you would not be able to smoke AND above all you would have to keep away from second hand cigarette smoke. So there are pitfalls but the benefits of this drug outweighs the negative.

    Kind regards

    Jazztrain

     

  • paul22133
    paul22133

    Posted

    I understand about the self diagnosis . I do plan on having the appropriate tests done . Also, two other factors I didn't mention are chest pains and the fact that I'm a male in my late 50's .
    • jazztrain
      jazztrain paul22133

      Posted

      Hi paul22133

      Well as to age I will be 72 later this month but remember your chest pains could and I repeat could be down to acute anxiety. Sometimes my chest rattles at night with the amount of mucous I get in my throat which as you swallow works its way down to the chest - so try using a higher pillow when you go to bed this may help.

      Kind regards

      Jazztrain

  • brenda62546
    brenda62546 paul22133

    Posted

    Hello Paul22133,

    Sorry to hear that you may have something as serious as, IPF. I remember you mentioned wheezing at nights, but this could be Asthma too. I have never heard that IPF has wheezing, but I do know that sometimes it has strange crackle sounds, mainly when there is an oncoming cold or flu, but this sounds are when using a stethoscope listening to the chest and back area.

    I remember reading that you said that you mentioned that your breathing shuts off when you are sleeping? This is a strong symptom of Apnea, and it may be best to have the doctor check you for Apnea too.

    I am only making suggestions, since I've heard that it can take up to three years to actually make a diagnoses for this disease, but you are doing the right thing promptly getting on it.

    I wish you well, and really hope you do not have this disease!

    I hope I have helped you some,

    Brenda

    • brenda62546
      brenda62546

      Posted

      I've also heard that if IPF is suspected from a cat scan evaluation, it is also a good thing to have a lung tissue biopsy to confirm it. This can be done by having a Bronchoscopy exam performed.

      I thought at one time that I had Pulmonary Function, but my cat scan did not show any scarring, but did show a lot of swelling inside my breathing airways, so they informed me as severe asthma, my breathing capacity is only 37%, and I am hoping it may change for the better, or change to higher percentage capacity, if possible, one day. 

      Good luck, and please keep us updated about what you find out!

      Brenda

    • jazztrain
      jazztrain brenda62546

      Posted

      Hi Brenda62546

      I has a bad cough in August 2011; by 2012 after breathing tests, a chest X-Ray and CT Scan confirmed I had an IPF. Unfortunately, Ipswich Hospital are not licensed to prescribe the medication I required to keep this disease in check and was referred to a Thoracic Chest Physician at Papworth Hospital and I am now on the drug called 'Pirfenidone' which costs over £500 per week. (So you now know why Ipswich Hospital could not prescribe it) Also the crackles in the lungs are to do with the IPF - nothing else!

      There are a few do's and don'ts but the benefit I get from taking this drug which NICE approved came onto the market in 20114 and will prolong my life BUT I will eventually get worse and have to use the prescribed Oxygen. 

      I also get very productive mucous in my throat but there is medication available to dry this up. However, I am under no illusion that my condition will eventually take me but it gives me time to A let me take holidays in Scotland where there is less pollution and to B put my house in order before I eventually leave planet earth.

      Kind regards

      Jazztrain

    • brenda62546
      brenda62546 jazztrain

      Posted

      Hello Jazztrain! 

      Sorry I am now just reading your comment to me. 

      I think it is terrible that the cost for the only medication for IPF costs so much money. Someone, not too long ago, informed me that his Dr's recently informed him that he had IPF, but the medication was going to cost him about $900 per month co-pay. His Dr has just recently prescribed him supplemental oxygen. When he told me about his diagnosis, he was waiting for his oxygen. 

      Have you thought about lung transplant? I know that is would really be a serious operation and especially decision. 

      Thank you for confirming what I wondered about, regarding the crackles in the lung sounds by stethascope examinations. I remembered hearing that the lungs can have crackle sounds with IPF, but did not realize that the crackle sounds are for only IPF patients solely. Thank you for that information, and is very interesting and valuable to know. 

      Whenever I have mucus developing, I usually take and over the counter medication, (mucus relief found at walmart stores),  Guifenisen 400 mg (not sure about spelling), and take one tab a day, until better. 

      Good Luck, and Take Care! 

      Brenda xo

    • brenda62546
      brenda62546 jazztrain

      Posted

      Hello Jazztrain! 

      Sorry I am now just reading your comment to me. 

      I think it is terrible that the cost for the only medication for IPF costs so much money. Someone, not too long ago, informed me that his Dr's recently informed him that he had IPF, but the medication was going to cost him about $900 per month co-pay. His Dr has just recently prescribed him supplemental oxygen. When he told me about his diagnosis, he was waiting for his oxygen. 

      Have you thought about lung transplant? I know that is would really be a serious operation and especially decision. 

      Thank you for confirming what I wondered about, regarding the crackles in the lung sounds by stethascope examinations. I remembered hearing that the lungs can have crackle sounds with IPF, but did not realize that the crackle sounds are for only IPF patients solely. Thank you for that information, and is very interesting and valuable to know. 

      Whenever I have mucus developing, I usually take and over the counter medication, (mucus relief found at walmart stores),  Guifenisen 400 mg (not sure about spelling), and take one tab a day, until better. 

      Good Luck, and Take Care! 

      Brenda xo

    • jazztrain
      jazztrain brenda62546

      Posted

      Hi Brenda62546

      Firstly they won't perform a lung transplant as I am too old at 72 but I am being quite well contolled on the Pirfenidone. They did prescribe 'Carbostine' in tablet form to help control the mucous but it didn't work for me. I read online that they do the same medicine in a syrup and it has started to work; so heres hoping it will get rid of it altogether given time.

      Kind regards

      Jazztrain

    • brenda62546
      brenda62546 jazztrain

      Posted

      jazztrain, 

      I just find transplants interesting, and have had thoughts about it myself. Also, I hope you can find the medication in syrup form works for you! 

      Take Care, 

      Brenda x

    • jazztrain
      jazztrain brenda62546

      Posted

      Hi Brenda62546

      Thanks for your concern, however I am gradually learning to live with it but it would be nice to get rid of it and lead a more normal life.

      Kind regards

      Jazztrain

  • paul22133
    paul22133

    Posted

    Brenda and jazztrain, thank you for your time and input ! I know that shutting down of breathing while trying to sleep is apnea . While I'm by no means an expert, I have been reading extensively about IPF .I would have to say what I'm putting out there is not a diagnosis, that would be silly, since I would need a medical degree and equipment . So I do understand the impotance of having the proper specialists, examinations and prognosis done. I have read where Apnea can be coupled with IPF and not a symptom . I could be and hope I am wrong in my leanings towards IPF ! The reason for my suspicion, is the fact that, so far, doctors are sending me home saying I'm fine, when I know I'm not . Why would they send me home without doing more extensive testing ? I don't know and it's very frustrating ! The is a Pulmonary wing in a hospital close to me and I'm trying to get into this hospital to get to the bottom of this, because what ever it is, is prgressing by the day, which of course worries me very much . Again, thanks for your time !
    • brenda62546
      brenda62546 paul22133

      Posted

      You are welcome!

      I think you are very wise going to your local hospital and visiting it's Pulmonary center to see what could be wrong with your lungs.

      Good luck, and please update us! xo

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