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    • #27191
      Kathleen
      Participant

      DO ANY OF YOU HAVE EXPERIENCE WITH GOING TO EITHER MAYO, DUKE, NATIONAL JEWISH or CLEVELAND CLINIC FOR SECOND OPINION, (or  any other interstitial  lung disease clinic)? We have no such clinic in our city and my Dr. has offered to give me a referral. Was diagnosed 6 weeks ago. Thank you in advance.

    • #27192

      Hi Kathleen,

      I know my co-moderator @mark-koziol will able to speak to one of these facilities. I don’t believe it was for a second opinion, but he can likely share his experience with you about one of these ILD clinics. I’ll let him chime in when he can and hopefully that helps you a bit 🙂

      Charlene.

    • #27194
      Mark Koziol
      Participant

      Hello Kathleen, all of the institutions you have mentioned are all world class centers. I biased to the Cleveland Clinic because they have provided my care. They have a top ranked pulmonary center and lung transplant center. They take some of the more high risk cases for lung transplant. Their cardiology unit is rated number 1 in the world. I have extreme confidence in my physicians ability and basically have put my life in their hands. They are a Pulmonary Fibrosis Foundation care center as well. Ultimately, the decision is yours where you want to get your second opinion and possible transplant. Take care, Mark

    • #27209
      Susie Robillard
      Participant

      @kathleenc

      Hi Kathleen,
      I also wanted a 2nd opinion when I was diagnosed in May 2018. I flew to Seattle to see Dr Ganesh Raghu… a world famous Pulmonary Fibrosis physician who authors numerous articles and studies. He was absolutely a wonderful person, very caring and EXTREMELY thorough. I was diagnosed with Hypersensitivity pneumonitis form of PF and prescribed Cellcept and Prednisone. My lung functions are now low normal, I am not coughing incessantly and I feel wonderful. Please email me if you would like his contact information. [email protected]. Wishing you all the besT! Susie Robillard

      • #27223
        Kathleen
        Participant

        Would you mind telling me what your initial  diagnosis was and how that was determined?  I had a lung biopsy, so I’m pretty sure it’s IPF, but mistakes have been made before???

    • #27213
      Les Viegas
      Participant

      Hi Kathleen,

      You bring up an excellent question that needs an informed response. In general, it is a wise decision to obtain second opinions to validate (1) if the diagnosis you have received is valid and (2) if the prescribed solution is the right one for your diagnosis given your specific health condition. Since there is always a probability that your condition may not be diagnosed correctly or that the prescribed solution may not be appropriate for your situation, it is well worth the time, expense and effort to get a second opinion from an expert.

      I am fortunate to have consulted with local pulmonologists at the University of Michigan Health System, Dr. Kevin Brown at the National Jewish Health, Dr. Marie Budev at the Cleveland Clinic and Dr. John Reynolds at the Duke Health System and am very familiar with what each of those institutions have to offer. As a frame of reference, I did get a lung transplant at Cleveland Clinic seven years ago.

      If you have been diagnosed with IPF by a pulmonologist with the appropriate pulmonary function tests, CAT Scans and biposy if necessary, then your interest should be to confirm a line of treatment that is appropriate for your condition. You could visit any of the heath centers you have mentioned and feel confident that you will be taking the most appropriate treatment for your condition. You will need to be examined periodically by your treating pulmonologist so proximity to the treating center would be an important criteria.

      If your condition warrants a lung transplant (which I doubt based on your 6 weeks old diagnosis), then my recommendation would be to consult with a center like Cleveland Clinic which has a lot of experience with lung transplants – or Duke depending on where you reside.

      I would be happy to provide a lot more detail about each center for your consideration – if interested please let me know.

      Best wishes,

      Les Viegas

    • #27225
      Les Viegas
      Participant

      @kathleenc

      Kathleen, based on CAT scans, pulmonary function Tests , blood oxygen saturation tests and 6 min walk tests, the pulmonologists at the University of Michigan Health Center concluded that my case resembled that of IPF. However, they told me that one is never 100% sure unless it is verified with a lung biopsy which they did and confirmed that I had IPF and not NSPF. I had U of M send the lung biopsy tissue samples to National Jewish Health and their pathologists confirmed that they were confident that my IPF was correctly diagnosed by U of M.

      As a general practice, if the biopsy is done at a reputable health center and the tissues examined by a well credentialed pathologist, there should be little reason to doubt the findings and conclusions since properly done biopsies are the gold standard for diagnosing such diseases. Such biopsies however do sometimes lead to some skin tissue scarring if not done properly which may impact on which side surgery may have to be done for a transplant later on.

      Do not hesitate to ask me any additional questions you may have on this topic.

      Les

      • This reply was modified 5 months, 2 weeks ago by Charlene Marshall. Reason: tagging
    • #27257
      Ben Robinson
      Participant

      I am on my 6th second opinion and going for more.  Starting with Johns Hopkins, reputedly no. 1, with my doctor treating Trump on TV ( no politics involved here at all just showing the reputation of the man selected to treat the President at the time )  called for a lung transplant and said i would be dead in two years.  But then took 4 years to make a diagnosis hundred tests of all sorts and never really did. Good man, hard working man, smart man but just overloaded and in his own tunnel of knowledge.  ILD diagnosis is slippery like the eel to grab with 200 sub diseases to sort through.  I am still quite alive in year 6 after taking medical classes to understand the jargon and processes despite the “your PFT declined 5.3 % get a transplant and die” prognosticators.  I am glad i didnt drink their Transplant KoolAid and would absolutely say to do like the above people have and travel the Country collecting opinions.  I also did.  Be your own advocate as they say.  Hats off to those of you who went through a lung transplant.  Cheers to your hard work, pain and success. I have yet to have full confidence finding doctors who can read a CT Scan and other imagery.  I am not sure any of them have full command in the reality because they are simply difficult to read.  I had a Robotic VATS Biopsy and it was a walk in the park except for removal of the Chest tube ouch.   But talk to the surgeon who performs it and also find out who is doing evaluation the material.  I found the surgeon input to be the most valuable.  They send out the slides to be viewed on a microscope or whatever by a pathologist tech of various experience levels and it doesnt seem to tell the full story.  I had three different diagnosis from the same slides.  The University of Maryland had the most accurate but the slides do not tell the full fibrosis story just primarily the underlying disease cells triggering it possibly like NSIP in my case which has generally ceased and the fibrotic Cytokine autoimmune storm with it.  The damage with PF piled up skin remains and i am working on that.  The tests and reports all have value but also have flawed interpretations mixed in.   Study and collect opinions for your own self in my advice and that includes reading the inputs in this valuable forum like i am doing now.  I hope this input adds some information of value to your journey of discovery which it truly is.

    • #27322
      Susie Robillard
      Participant

      @kathleenc

      Hi Kathleen!
      I am so sorry I am so delayed getting back to you when you asked what my initial diagnosis was. Initially I suffered a Mini Stroke (transient ischemic attack) while in FL at our daughter’s home on Christmas Day 2018. During hospitalization the radiologist said my lung X-rays indicated that I had COPD (I never smoked). I did not put much store in that until about 3 months later when I began to cough incessantly and was becoming more and more SOB. Finally in May 2019 I made an appointment with a pulmonologist that a friend recommended. He looked at the copy of the Xray and said it was NOT COPD but rather it was Pulmonary Fibrosis. He followed up with a CT scan in June which confirmed it. He felt it was either IPF or Hypersensitivity Pneumonitis form and recommended trying a course of one month of high dose prednisone and then come back and probably do course a of CellCept and Prednisone. After a month on the prednisone the cough was so much better but still SOB. I was uncomfortable taking meds without a definite diagnosis so my daughter researched Dr Raghu and he contacted me with an appointment.
      He ran every test except the lung biopsy which he recommended. We returned to Columbia and my home pulmonologist with all the test results and consultation. He agreed with Dr Raghu’s assessment that it was probably Hypersensitity Pneumonitis due to all the abnormal results from the bronchoscopy biopsies and fluids and scheduled a lung biopsy with the thoracic surgeon which confirmed the hypersensitivity
      Pneumonitis form of PF. I started the recommended CellCept and prednisone regimen and have not felt this good in a long time. Hardly any cough. Only short of breath when climbing stairs, tee boxes or greens at the golf course.
      My last CT in October 2020 shows no changes and my PFT’s are greatly improved to the point of being in the low normal range for a 73 year old.
      I apologize for the length of this response, but it was a long road getting to the diagnosis. I know how frustrated you must feel. Find the best doctors you can, make the best informed decisions that you can, and then move forward with a treatment. I hope and pray that you will get a second chance like I did. Take care! Susie

    • #27626
      Diana
      Participant

      Hi Kathleen,

      In early 2017, one month after quitting smoking, I started having shortness of breath. By May 2017 I ended up at the University of Minnesota Medical Center.  After a Bronchial Lavage, I ended up with Respiratory Failure and on a ventilator in ICU. My scans showed fibrosis (not IPF),  and patchy ground glass opacities. The initial diagnosis was Interstitial Lung Disease caused by Eosinophilic Pneumonia.

      At the end of the year, they were unsure of their diagnosis, so I had a Cryobiopsy where they took tissue samples. This time, the diagnosis was Hypersensitivity Pneumonitis.

      I was doing okay until I quit smoking again 🙁   in March 2020. Again, one month later developed shortness of breath and progressively got worse over a few months. Eventually saw Dr. with U of M in December, who discussed my scan with Radiologist. Radiologist went back to Eosinophilic Pneumonia diagnosis. Frustrated with U of M, I made an appointment at Mayo Clinic in Minnesota, as they are rated high for Interstitial Lung Disease.

      Just saw them last week. Dr. at Mayo thinks Chronic Hypersensitivity Pneumonitis, but before she starts me on Cellcept, is sending me to their Rheumatology department.

      The problem with these Interstitial Lung Diseases is that there are so many, and a lot of them have similarities. I was at the University of MN for one month, and they still couldn’t pin it down.

      You are so wise to get a second opinion. I wish I would have gone to Mayo sooner. Let us know where you end up and what you find out.

      Diana

      • This reply was modified 4 months, 2 weeks ago by Diana.
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