Pulmonary Fibrosis News Forums Forums Welcome Lounge Best Lung Center in Northeast USA

  • Best Lung Center in Northeast USA

    Posted by anonymous on August 10, 2023 at 12:29 am

    I have seen advice says “get with a lung center” and on the list for a transplant early (if interested in that option) with fibrosis, as the disease can be unpredictable. Any recommendations?

    James Burns replied 7 months, 1 week ago 11 Members · 14 Replies
  • 14 Replies
  • Rand O'Brien

    Member
    August 10, 2023 at 2:57 pm

    A couple years ago, MGH in Boston was “ranked” 4th in the nation.

  • MyrnaM

    Member
    August 11, 2023 at 9:09 am

    My husband is a patient at NYU- Langone in Nyc.

    They are AMAZING!!!

  • anonymous

    Member
    August 11, 2023 at 9:14 am

    cool thanks! I saw them too. what do you do for parking and congestion toll pricing they have now? do u park there, a pay lot, or outside the city?

  • anonymous

    Member
    August 12, 2023 at 8:34 am

    going by this, the survival looks a little better at other centers

    Transplant Centers (srtr.org)

  • Kevin collier

    Member
    August 15, 2023 at 10:33 am

    I will be 75 in October, diagnosed in January 2020 and travel 123 miles to Cleveland Clinic, and was recently accepted in there transplant program.

    • Susan Gibbard

      Member
      August 16, 2023 at 1:39 pm

      I’ve been told by my many doctors including 3 pulmonologists, that at 74, I’m too old to be on a transplant list.

      What have others been told? This is very surprising to me.

  • Kevin collier

    Member
    August 15, 2023 at 10:33 am

    I will be 75 in October, diagnosed in January 2020 and travel 123 miles to Cleveland Clinic, and was recently accepted in there transplant program.

    • Linda Maguire

      Member
      August 16, 2023 at 2:50 pm

      I think the age criteria varies, depending on the transplant center.  I was told recently that many centers have increased their age limit from 70 to 80.

  • John Dominguez

    Member
    August 15, 2023 at 2:54 pm

    I had a single lung transplant at BWH, Brigham and Women’s Hospital, (now Mass-General-Brigham-Hospital or MGBH) in Boston 2/14/2016 at age 70.5. Great hospital and great service. I would recommend.

  • Donald Salzberg MD

    Member
    August 15, 2023 at 3:17 pm

    I agree with you that Brigham & Women’s Hospital is excellent. I live in CT (2 hours away). I think it’s critical to choose a medical center that (of course has good successes) will be close to family/friends & advocates. My family is centered in Miami. It turns out Jackson Memorial Hospital just brought in two top-notch transplant surgeons. BWH was a problem for me as I always had to have 2-3 advocates come with me.

  • Jeffrey Carver

    Member
    August 15, 2023 at 5:32 pm

    I’m being seen at BWH Lung Center in Boston, and I think the care teams are very good. (MGH and BWH have merged, but they still have separate lung centers, I  believe.) I have not met the transplant teams, except for a preliminary interview.

    I wonder if any of these centers in the NE have adopted (or tried) the less invasive transplant procedure pioneered by Cedars Sinai in L.A. (I don’t have the link, but I read about it on this forum.)

     

  • Donald Salzberg MD

    Member
    August 16, 2023 at 2:58 pm

    Hi Susan. I understand what you have been told. I think that a strict cut off (eg age 75) is being expanded at certain centers depending on your medical status. That’s assuming medically you are healthy enough to withstand the procedure, plus no recent cancer diagnoses, obesity, severe diabetes, heart issues etc. I am 68, so on one hand I prefer a slow progression BUT when is one too old??. The larger centers like Duke, Cleveland etc may be willing to stretch things when appropriate. If you are at a point where you are (now or soon) in need of lung transplant surgery—look for the larger centers.
    Doctor Don

  • Kathy Legere

    Member
    August 17, 2023 at 9:54 pm

    My husband is 75. We have been turned down by Duke and NYU Langone.  We are currently trying to get listed at Temple and Columbia Presbyterian in NYC. We live in CT so Columbia would be our most convenient center.  We went to Temple as they are supposed to tackle more difficult cases. We have friends that were turned down at 5 centers and was accepted at Pittsburg. Keep knocking on doors. Each center has its own criteria. I think the only body parts they haven’t looked at  are his toenails!

  • James Burns

    Member
    September 21, 2023 at 7:01 pm

    I had double lung transplant at Duke in April of 2022 and it was fabulous. They continue to follow up and the doctors and staff are great. I can do virtually anything now without oxygen and feel great. The meds are numerous but do not present many side effects so far. Ofev was much more difficult, on that for 4 or so years before I progressed to a condition which qualified for transplant.

    Jim

Log in to reply.