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  • This topic has 14 replies, 9 voices, and was last updated 1 month ago by Dave.
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    • #29220
      Ping Xu
      Participant

      I am new to the PF forum. I was diagnosed with IPF by the pulmonologist at the COE locally in June and thought of getting a second opinion at Cleveland Clinic. I requested an appointment from the Cleveland Clinic website a month ago before my local COE pulmonologist did any test. I just received a phone call that scheduled me to see a doctor at Cleveland Clinic at the end of the month. There was no appointment for any additional testing or procedure, only the doctor’s appointment. I looked up the doctor’s name and found that she is a first year fellow. For those of you who sees doctors at Cleveland Clinic, is it typical to be scheduled with a fellow? I am out of state and will have to drive five hours to Cleveland for this visit. Could I ask to see a more experienced doctor? Or ask to see a specific doctor?

      Previously I have asked my PCP to send my chest x-ray and HRCT images to Cleveland Clinic, which they probably have received. But I just asked my local COE to send my medical records including bronchoscopy, blood work, pulmonary function test, etc, to Cleveland Clinic and I doubt they have received it. Is it typical that a second opinion involves just a doctor’s visit without any further testing?

      If you had sought a second opinion at Cleveland Clinic, or other big centers, could you please share your experience? Thank you very much.

    • #29244
      Craig Klopfleisch
      Participant

      @pingxu0713

      On my first visit I believe they just reviewed my tests from elsewhere since they were recent and insurance likely would not cover duplicate tests so soon. There are not a lot of treatment choices for IPF as you will soon discover if you have not already. So at best you should find out whether Cleveland Clinic agrees with your current diagnosis and whether the “standard of treatment” you are receiving, or that has been recommended to you, is consistent with their assessment. They are the 4th place I went after 2 regional pulmonologists and the Ohio State COE and I only wish I had begun at Cleveland (but how is one to know?). I would not hesitate to be seen by anyone there (I have interacted with several of the Drs. and currently see a nurse practitioner who I love).

    • #29252
      Ken Mills
      Participant

      Ping Xu, I recently had a second opinion at the Cleveland Clinic but I did it as a video visit. If your appointment is strictly to discuss your condition with a doctor, I recommend that you try a virtual visit before making a five-hour drive. I was very pleased with the doctor that I met with and am very glad that I sought a second opinion at the Cleveland Clinic.

    • #29266
      Ben Robinson
      Participant

      I had to take medical classes on line to be a doctor to manage my doctors and my disease. I agree that second opinions from such high level places are a smart thing to do. But I have found that they all lack knowledge of interstitial lung diseases. There are 200 types. Did they tell you that? I found mine on NORD for rare diseases. One major factor in determining which disease you have is the inflammation which is felt and produces lung mucus. Lung mucus is different. Like the goo dripping from the library cards on ghostbusters. If you have that it will keep hardening into PF as time goes on. Prednisone bursts are the only treatment. 5 days at 40 mg the one day at 20 mg every third week then to 7.5 per day. Higher doses cause side effects you don’t want. The pompous and learned will say I am full of poo.  But I know I am right and I don’t care about the dam doctors disagreeing and I learned the hard way.  The first one now says  I was right after seeing COVID work and apologized.  For what it is worth take it to another level as your own advocate. These Pulmonologists are half lost.

    • #29417
      Linda Maguire
      Participant

      I live in VA & had a 2nd opinion at National Jewish in Denver 5 years ago.  They scheduled me for 4 consecutive days of tests.  I had all my records, lung biopsy results, PFT’s, etc. sent ahead of the visit.  I initially met with a resident MD & his supervisor, then had tests that afternoon & for the next 3 days, with a “wrap-up” with both docs on the afternoon of the last day.  I felt I got a very thorough evaluation & recommendations.  I’m not sure I’d drive 5 hours just to meet with a doc without them doing further testing!  Some people in my support group have gone to Inova in D.C. & had a similar, disappointing experience.  Met with a doc, had a PFT & 6 min. walk & nothing more.  I was very pleased with the thoroughness of my consult at National Jewish & will go back if my disease progresses.

    • #29418
      Ping Xu
      Participant

      Craig, Ken, Ben, and Linda,

      Thank you so much for replying me and sharing your experiences. These have been really helpful. I am sorry that I have been slow in responding. The diagnosis of IPF really struck me as a huge shock and I feel bad that I have been trying not to avoid thinking about it.

      I had already made my visit to Cleveland Clinic for the doctor’s visit and wanted to report back what I had experienced. Although the visit was only one hour and I had to drive 5 hours one way to get there, I would say I was glad that I made the visit. I uploaded the images of the HRCT to Cleveland Clinic and printed all my medical records from my local COE (I requested the medical records to be transferred to Cleveland Clinic and for whatever reason it was unsuccessful).  The fellow doctor was nice. After talking with me, she brought all the records to an attending doctor. Both of them then came back to talk with me. The attending doctor told me that he did not agree with the IPF diagnosis that my local COE pulmonologist gave me. Considering my demographics (age 44 and female), he though my chance of having IPF is low and the HRCT did not show clearly the UIP pattern. They will be requesting the bronchoscopy samples from my local COE and discuss my records with their team. They will let me know after that but it could take a few weeks getting the samples. He thinks I need to do a surgical biopsy to be absolutely sure what the diagnosis is but that will be after the team discussion. I guess this is good but I am dreadful of the surgical biopsy. I will report here once I hear from the doctors at Cleveland Clinic.

       

      • #29562
        Linda Maguire
        Participant

        Ping,

        I’m so glad you had a positive experience at Cleveland Clinic!  Although I had a surgical biopsy & was diagnosed with the UIP pattern of IPF here locally, the National Jewish MD’s didn’t think I fit the usual pattern for IPF & took my “case” to Grand Rounds there, & their other MD’s agreed that I wasn’t “typical”.  I was diagnosed 5 1/2 years ago at 66 and had no risk factors for IPF.  In the process of diagnosis, I was also diagnosed with “Silent” reflux, and both National Jewish & my local pulmonologist believe my fibrosis may have been caused by the previously undiagnosed reflux.  I’m happy to report that I have been stable with no further progression of the fibrosis to date.  I am currently not on an anti-fibrotic medication, just Prilosec for the GERD.  Wishing you the best of luck & hoping your 2nd opinion will result in a less devastating diagnosis!

        • #29565
          Ping Xu
          Participant

          Linda,

          Thank you so much for sharing your experience. I am so happy to know that you have been stable for more than 5 years. I have heard from many posts that National Jewish is a wonderful center for lung fibrosis. Unfortunately it is too far away from where I live. Do you mind sharing how your silent reflux was diagnosed? My local pulmonologist asked me whether I had any acid reflux and I said no and I think that was how he ruled out GERD. There was no additional testing. I also had negative results for the blood test of autoimmune disease and hypersensitivity pneumonitis so those were ruled out. I had a positive result for UIP based on the envisia genomic machine learning classifier and that was the reason why the local pulmonologist diagnosed me with IPF. I am not sure how reliable the envisia classifier is, but it didn’t convince the Cleveland Clinic doctor. I hope I will receive a diagnosis that is not as depressing and hope to remain stable with the appropriate treatment.

        • #29602
          Linda Maguire
          Participant

          Ping,

          My pulmonologist was Yale trained & very familiar with IPF, however because I had no risk factors, she sent me for about 40 blood tests to rule out any auto immune disorders, as well as a Barium Swallow (an easy, non-invasive test) to rule out GERD.  I had no heartburn or sx of acid reflux other than a cough, so when the test came back positive, I didn’t believe it!  I then saw a GI for an endoscopy which confirmed that my esophagus was very inflamed.  Based on that, I started Prilosec, 20 mg. twice daily.  Although my GI says there is no clearcut research that supports a connection between GERD & IPF, there is tons of anecdotal information linking the two, & my pulmonologist believes that MAY be the source of my fibrosis.  It is certainly something to rule out.  I did have a surgical biopsy confirming the UIP type of IPF, although NJH didn’t think I fit the typical pattern, as I said.  I got through the biopsy fine.  It isn’t too bad if you are otherwise healthy, although I thought there was a new, less invasive diagnostic procedure.  I’m not familiar with the Envisia testing or its accuracy.  I don’t know where you live, but Cleveland Clinic has a good reputation, too.  I’m originally from Denver & NJH is often rated #1 in the nation, so that is why I chose to go there & combine it with a visit to family.  I was impressed that they had a specific 4-5 day protocol for out of state patients to be evaluated.  I hope Cleveland Clinic will be able to provide you with further diagnostic testing & a more definitive diagnosis.  Best wishes!

        • #29617
          Christie
          Participant

          @lmaguire Linda, thanks for sharing your experiences with this.. I didn’t know it was so easy to diagnose silent GERD, so thanks for educating me 🙂 Also, isn’t Grand Rounds amazing? I had a friend who used to work for them and it makes such a difference in the diagnostic timeline. Can I ask if you had to pay for that service or if it was covered by your medical facility?

        • #29646
          Linda Maguire
          Participant

          Christie,

          I’m not familiar with a “company” called Grand Rounds.  Each medical school/training facility usually holds a “Grand Rounds” meeting monthly where their MD’s & other staff meet to discuss a clinical case of one or more patients or has a presentation on a timely topic.  In my situation, the NJH MD that was consulting with me presented my “case” to the other MD’s during Grand Rounds to get input, because he didn’t think my HRCT or biopsy fit the “typical” pattern of UIP IPF.  I was lucky to get the benefit of  the opinion of multiple MD’s & Residents at NJH because my IPF seemed unique or interesting enough to be presented.  There was no cost, as it was “training” for them while being diagnostic for me.

        • #29647
          Linda Maguire
          Participant

          Christie,

          I’m not familiar with a “company” called Grand Rounds.  Each medical school/training facility usually holds a “Grand Rounds” meeting monthly where their MD’s & other staff meet to discuss a clinical case of one or more patients or has a presentation on a timely topic.  In my situation, the NJH MD that was consulting with me presented my “case” to the other MD’s during Grand Rounds to get input, because he didn’t think my HRCT or biopsy fit the “typical” pattern of UIP IPF.  I was lucky to get the benefit of  the opinion of multiple MD’s & Residents at NJH because my IPF seemed unique or interesting enough to be presented.  There was no cost, as it was “training” for them while being diagnostic for me.

        • #29648
          Linda Maguire
          Participant

          Christie,

          I’m not familiar with a “company” called Grand Rounds.  Each medical school/training facility usually holds a “Grand Rounds” meeting monthly where their MD’s & other staff meet to discuss a clinical case of one or more patients or has a presentation on a timely topic.  In my situation, the NJH MD that was consulting with me presented my “case” to the other MD’s during Grand Rounds to get input, because he didn’t think my HRCT or biopsy fit the “typical” pattern of UIP IPF.  I was lucky to get the benefit of  the opinion of multiple MD’s & Residents at NJH because my IPF seemed unique or interesting enough to be presented.  There was no cost, as it was “training” for them while being diagnostic for me.

    • #29430
      CD Roper
      Participant

      Please give me opinions of where you had transplants done & why. Anyone use Johns Hopkins? What was results & were you happy with results? How did your life improve etc,.,

    • #29606
      Donald Salzberg MD
      Participant

      Hi Linda:

      Thank you for sharing your experience at National Jewish Health. I am 66 and now a retired Ophthalmologist. I had a VATS open lung biopsy 3 years ago (age 63) that was consistent with IPF. I am curious as to what biopsy you had. I have been on OFEV for 3 years. I have also been on Omeprazole 20 for many years. I agree that GERD likely plays a role as does Dr Ganesh who is a guru with this. I’m also on CPAP. My PFTs are abnormal but unchanged for 3 years. I’m curious as to why they felt you “didn’t fit the mold!”  I live in CT but would take the plunge to have an extensive 2nd opinion but once the biopsy was read as IPF I started the ANTI-fibrotic. I’m waiting to hear from a nurse at NJH. The biopsy is not that bad as you stated. Would do it again if I had to!!  I also have no experience with the Envisia but one can have HP with “normal” blood work and in the end, it’s the biopsy that will differentiate HP from IPF. I was initially told I have HP with normal blood work but I did the “doctor card” and helped push for a VATS lung biopsy. Thank you again.
      Don Salzberg MD

      • #29649
        Linda Maguire
        Participant

        Don,

        I also had a VATS lung biopsy in Feb., 2016 here in VA, which led to a diagnosis of the UIP type of IPF by the surgeon.  Seeking a 2nd opinion, I went to National Jewish in July, 2016 & went through 4 days of testing & consults.  NJH also did a bronchoscopy to rule out HP.  Although I don’t really understand some of the terminology, the reason they felt I didn’t fit the typical pattern is because I had “no honeycombing or fibroblastic foci, no granulomas or lymphoid hyperplasia, however, patchy, mild interstitial fibrosis that is difficult to classify.”  I have no risk factors, & all of my PFT’s are in the normal range except for DLCO, which is slightly low.  I had a longstanding, dry cough which I attributed to allergies, but my husband insisted I get it checked out, & after a consult with my PCP, a couple chest XRays, & an HRCT, I ended up with the pulmonologist who immediately told me I had IPF & this journey began.  NJH recommended I hold off on an anti-fibrotic & treat the GERD which they, & now my pulmonologist, believe may have caused my fibrosis.  I was “early in the game” when I went to NJH & was impressed with their protocol for out of state patients, but you may be far enough into the diagnosis & treatment process that you might not find it as helpful; although getting a 2nd opinion can be reassuring.  I think they’re a great facility & Denver is a nice place to visit with lots to see & do if you decide to go!    Linda

    • #29612
      R. Chris
      Participant

      After first an X-ray, then a CT Scan, my pulmonologist scheduled a lung biopsy. That left no doubt. No need for a second opinion.

    • #29667
      Dave
      Participant

      If you look at the mychart portal for Cleveland Clinic it has a link where you can request another doctor.

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