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    • #27360
      james geigle
      Participant

      I am new to the forum. I am a 74 y.o. man living in Los Angeles. I was diagnosed with PF about 4 months ago by a Rheumatologist, who is working along with my Pulmonologist. I am a member of Kaiser. He said he thinks my ongoing scarring is due to an auto-immune response. I have been taking Cellcept for 4 months. I have also begun taking OFEV for almost 3 weeks. I have not had any serious side effects.

      I am thinking I need a 2nd opinion. I understand that UCLA and Cedars-Sinai have research facilities for lung disorders. I am wondering if anyone on the forum has experience at either center, and could suggest a doctor at either place to try to connect with?

      Also, can anyone recommend the forum for spouses and care givers? My wife is having a difficult time with this whole thing.

      At this point I am feeling confused and alone.

      James Geigle

    • #27378
      Mark Koziol
      Participant

      Hello James, there are many spouses and caregivers on our forum. Please have your wife complete the request to become a member. Our member caregivers are well informed and compassionate. I’m sure they would love to lend an ear or share their experiences with your spouse. I’m sorry I do not have any experience with the two centers you have mentioned. Hopefully another member has. Have a great breathing day! Mark

    • #27719
      james geigle
      Participant

      Thanks for responding. I have been trying to encourage my wife to give a spouses forum a try.
      Do groups ever meet by Zoom? This would probably work best for her.

      • #27788

        Hi @jgeigle

        Thanks for writing to us James. Regarding the Zoom meetings, that isn’t something this platform has ever done but I would consider it if a small group were interested? I have a paid account and can have up to 100 people… might be something worth considering if it would help your wife. Let me know and I’ll maybe ask our team about it 🙂
        Char.

    • #27721
      Marianne
      Participant

      James –

      Check with your pulmonary doctor to see if there are any local support groups in your area.  I am in Ohio but in a local support group that meets by Zoom.  They only meet 3-4 times each year.  Before Covid they met in person for a 1 hour presentation and then had lunch.  As I was working full time then, I never attended these in person meetings.  Possibly UCLA or Cedars-Sinani might have groups that Zoom.    Good luck.  We are always here for any questions or concerns.

      Marianne

    • #27736
      Heather
      Participant

      @jgeigle

      Hi James – I’m on the forum here as a spouse of an IPF patient. I have found this to be immensely helpful. As for getting a second opinion, I am on the east coast so can’t really help with anything in-person, but Dr. Cheilonda Johnson at UPenn is amazing and maybe she will do a remote consultation?

      https://www.pennmedicine.org/providers/profile/cheilonda-johnson

    • #27744
      Ted Ted Fecteau
      Participant

       


      @jgeigle

      James, in addition to this support group, another very good online group fo information is inspire.com. Use google search online to search for of support groups in Los Angeles and you will find a number there. You can also probably find others who have experience with second opinions at the other Center’s you mentioned. Read, read, read to learn as much as you can but don’t necessarily apply to yourself everything you read or hear. We are all different and while today’s medical knowledge and practice is far improved above even 15 years ago, so much is still unknown. But a lot of information collectively can start helping understand what is happening to us.  Take care both you and your wife. All is not immediately doom and gloom. The road ahead is more likely to be a long and slow one.

    • #27793
      Manzurul Khan
      Participant

      Hello James,

      I live in Houston, TX and joined a group in Dallas area called PF Warriors. They hold monthly meetings and have great presenters. I attended the last 2 and got lots of new information on Oxygen therapy and other topics. Look them up on Google. I am also looking for a second opinion and someone with established authority in this field in my geographic area. I plan to visit a professor at Baylor College of Medicine but department chair, Dr. Ivan Rosas, is not seeing new patients. Anyone here has a referral? Thanks.

       

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