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    • #23223
      Zee
      Participant

      Hi everyone, I’m new to the community and have some general questions.
      How were you diagnosed and how long did that take?

      About 2 years ago I was diagnosed with GERD and currently have Graves disease, which is an autoimmune disease. About 13 months ago, I started dry coughing. It started out bad, my cough is still there but not nearly as bad. About 2 months after the cough I noticed I would get winded going up the stairs, which is odd because I’m quite active. I had 2 xrays, clear, and a ct scan last June, also clear. I had a spirometry done in May that came back with a general reactive airway disease and was given an inhaler. The inhaler has never worked for my shortness of breath, even emergency inhalers. Blood work has all been clear. Had a methacholine challenge which confirmed no asthma. Second spirometry showed lower numbers than the first and what my Pulmonologist called “barely not normal.” Starting in October my shortness of breath has intensified. I feel like I can’t take a deep breath or get air to go completely into my lungs. I have had 3 doses of prednisone which calms my shortness of breath then it continues. Dr. Thinks that was from respiratory infection and dismissed it. He basically told me something is irritating my airways and that was that. I have been really miserable lately and called my Pulmonologist. He wants to try me on another inhaler (for the 6th time) and have me come in in 6 weeks when his next appointment is. I feel like this is just prolonging the time to get a real diagnosis. My biggest worries are having a chronic cough, a now chronic shortness of breath and having not only GERD but an autoimmune disease as well. While most tests have been negative, along with heart tests, I’m starting to dive deeper myself. Am I paranoid? Yes. But I am desperate for a real diagnosis. I am completely unsatisfied with “something is irrating your lungs heres an inhaler.”

    • #23224
      Mark Koziol
      Keymaster

      Hello Zee, I’m my experience the X-ray showed a dense area in the lungs to cause speculation my lungs were fibrotic. Sometimes a HRCT (cat scan) will identify pf or ipf. My Bronchoscopy was inconclusive. I consented to the VATS procedure and was then formally diagnosed with IPF. During my time suffering with IPF pre-transplant the rescue inhalers or any type of inhaler did not work for me. I was placed on supplemental oxygen because my saturation would fall under 88%. If you are not satisfied with your pulmonologist you can find a new one for a second opinion. Go in with your questions and be assertive with your desire to at the least have an established diagnosis. Take care, mark.

    • #23225
      Zee
      Participant

      Thanks for the response.
      It is concerning for me to not respond to inhalers for my shortness of breath. I do think I’ll see another pulmonologist.

    • #23226
      Mark Koziol
      Keymaster

      Zee, my pulmonologist prescribed the rescue and we tried another inhaler but I can’t remember the name. He told me from the outset that they most likely would not help me. I’m sorry you are going through this medical crisis. It’s always worse when we don’t know what is going on. Mark

    • #23236
      Dianne Jones
      Participant

      Hello, I am sorry to hear you are having so much trouble being diagnosed.  My doctor started with a chest x-ray, moved to the CT scan or MRI.  From that I went to a surgeon for a lung biopsy and that gave my pulmonologist the definitive answer.  February of 2019 I started oxygen but I have been on Prednisone for about eight years, which has basically kept me stable.  There are times when I have a flare-up and the mg’s change to 20-25  up from 7.5 mg of prednisone for 1-2 weeks, then go back to by regular dosage.  I will always continue to pray for the pulmonary fibrosis community, hang in there and keep the faith.

       

    • #23238
      Joe Murray
      Participant

      Zee I had a lung biopsy that gave a definitive dx of IPF.  That was Feb. 2018.  I use spiriva respivat inhalor (two puffs once a day) and have very little or rare cough.  Good luck and please do get a second opinion or a new pulmonologist.

    • #23240
      Barb S
      Participant

      Hi Zee, I was diagnosed with PF a little over a year ago.  Mine was diagnosed with a C scan.  I also have an autoimmune disease, scleroderma, which my rheumatologist thought it was only a matter of time before till i was diagnosed with PF.  I have a chronic cough which i’ve had over 10 plus years and through this forum i asked my pulmonologist  if i could take Gabapentin and my cough has subsided about 85%.  I also take Omeprazole for the GERD which is also related to the scleroderma.  I also had the PFT (pulmonary function test) and the chest x-ray which all confirmed my PF.  I have had these tests now that i just passed my one year diagnosis and thankfully, have not had any significant change on the med regiment i’m on.  I’ve learned so much from these forums and I’m hoping you find the answers you are looking for.  Take care

    • #23242
      Donna Coyle
      Participant

      I was recently told that my High Resolution CT showed Nonspecific Interstitial Pneumonia.  My Dr mentioned a lung biopsy (VATS) could be next.  I have researched it and it scares me.  Who has had VATS?  Did it give you more of a diagnosis?  What was the recovery like?  How long did you have to be hospitalized?  My life is in such an uproar do tthis disease and it has just begun to unfold.

    • #23243
      Zee
      Participant

      Thanks everyone, your responses have been helpful. I’ll be scheduling an appointment with a new pulmonologist and hope to get some answers.

    • #23244
      Mark Koziol
      Keymaster

      Hello Donna. I had the VATS procedure. Surgery was on Thursday and I was discharged on Saturday. The procedure gave me the exact diagnosis of IPF. I had very little pain associated with the procedure and my recovery went well. The surgery was minimally invasive whereas my incisions resembled an arthroscopic procedure. Remember this is your decision to make. You have to weigh the pros and cons. Good luck and take care, Mark.

    • #23250
      Sara Tanner
      Participant

      I’m so sorry you are going through this! I can’t imagine how frustrating that would be!! My husband had absolutely no symptoms of cough & shortness of breath until a bad bout of pneumonia. He did have history of smoking for years, but had stopped 7 yrs ago. Xray only revealed small spot of pneumonia in one lung. He started as out patient at home taking antibiotic/steroids etc., but after threes days became worse. He was hospitalized locally with around the clock breathing treatments, IV meds etc. etc. Still no improvement & was transferred to St Louis hospital Pulmonary ward. After days of blood work etc., they did CT of lungs & fibrosis immediately was found in upper lobes thus his diagnosis being Idopathic Pulmonary Fibrosis with moderate Emphysema. Ruled out autoimmune disease through rigerous blood work etc. They did mention lung biopsy was another test for definitive diagnosis, but it would have been too great of risk to test at that time. He’s been on OFEV for four months & much improved! Don’t give up & seek an answer & treatment that satisfies you! Good luck!!

    • #23257
      Barry McGee
      Participant

      Hi Zee

      There is a new diagnostic tool, called Envisa Genomic Classifier.  It is performed on samples taken during a bronchoscopy. It is specific only for IPF and cannot identify other causes. The bronchoscopy itself should be done anyway,as it can provide answers.  I have refused a VATS biopsy and I was told later, by UCSF, that it would be too risky for me.

      Best of Luck

      Barry

    • #23258
      Barry McGee
      Participant

      Zee

      Correction: It should be Envesia Genomic Classifier

      Barry

    • #23261
      Mark Koziol
      Keymaster

      Hello Barry, thanks for sharing that information. I believe it’s something for our members who are going through the diagnostic stage to bring to the doctors attention. Take care, Mark.

    • #23270
      Judy
      Participant

      I was diagnosed about a year ago, but not conclusively. I have been on o2 since last year as my levels drop without it. I was on prednizone 10 mg. I was taken off that in January of this year to do testing see what the changes were with ct and pft.. Put on ofev but couldn’t tolerate the side effects. I was going to have lung biopsy, but tests reveled my lungs were not strong enough and risk to great. So I am back on predinzone 20 mg. I had become very weak on the ofev and am still getting my strength back. I still do not have a complete answer but I  am coming to the realization if I  can feel somewhat better that is where I am going to be.

      I wish you better luck in finding your results.

    • #23304
      Mike Mses
      Participant

      Zee ( @mb2285 )

      I was diagnosed in June 2018 when they tried to repair three fractured vertebrae under IV sedation.  O2 level fell to 66 and I was told to see a pulmonologist.  By CAT Scan and PFT there was no problem diagnosing me with IPF.  I am still on O2 only when sleeping, moving around a lot (like shopping), and when exercising.  I am holding my own, but you never know when this disease will take a plunge and make me totally immobile.  I will be 71 in June.  I was recommended to have an evaluation done to see if I would be a candidate for a lung transplant, which I am doing this week.  I am waiting on the final results, but everything so far says that I am in good health except for two lousy lungs.  If approved, I will get on the transplant list in an effort to have another 10-plus years with my family.  My advise — Checkout another doctor.  My GP misdiagnosed my condition several times over a three year period.  My pulmonary doctor is excellent and there was no question from the start as to what I had.  Hope this helps.

    • #23315
      Thom
      Participant

      @mb2285 / Zee,

       

      BARELY NOT NORMAL?  Sounds like double talk.  Pardon me. Im most certainly no doctor.  However i agree with the others, you do need to see a more knowledgeable physician.

      The first pulmonologist i went to see never as much as even used a pulse ox on me.  Within 10 minutes of meeting him he blurted out to my wife that I would be dead in about 1 year…..get affairs in order.  His next breath told me he wanted me on Esbriet.  What is Esbriet???  No explanation was forthcoming.

      I left his office with out msking a follow up visit.  His office phone seversl times asking when i planned on returning.  Was i his only patient!!

      Fortunately i live one hour from NYC,  40 minutes from Yale, and 90 minutes from Boston.  The world was basically at my fingertips.

      Needless to say i never went back.  I found out he was not board certified, I had no idea what that meant up until meeting him.

      My suggestion, as others have suggested.  Find a real doctor with a licence and not learners permit.

      All the best to you.

      Thom

       

      • This reply was modified 5 months, 1 week ago by Mark Koziol.
      • This reply was modified 5 months, 1 week ago by Charlene Marshall. Reason: tagging
    • #23349

      Hi @thom,

      What a terrible experience you had with this first physician – so sorry that doctor’s can be that incompetent and blunt, in terms of your diagnosis. I am so glad you sought out a second opinion, and are likely receiving much, much better care in the NYC/Boston areas. A lot of great specialists in that area. Good for you for going elsewhere, and thanks for sharing your story. Hope it helps others who are struggling with their diagnosis. I know it can be tough to get a good physician!
      Char.

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