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  • I was put on the transplant list at Temple in PA on January 24th. I now hear from my son in England that everyone applying for a new driving application is automatically on the donar list unless you opt out.
    Would that not be great if introduced in the USA as well

    • Hello Pamela, congratulations on being placed on the transplant list. Temple is a highly regarded transplant center. I wish you good fortune on a short waiting period. It would be nice if the USA had the statutes regarding donor lists especially since so many organs are not viable for transplant. Best wishes, Mark.

  • Mark, Just wanted you to know that Temple University Hospital called me this morning and are putting me on the transplant list next week.

  • Pamela Green posted a new activity comment 1 year, 5 months ago

    Cynthia, Dd you get onto the transplant list at Mass General?
    I am pleased I moved to Temple who appear to have an excellent program and my ex-daughter in law has kindly offered me her home for us to stay an hour away from the hospital for as long as we need. I feel truly blessed.

    • That’s great. I wish you the best, and that’s terrific that you’ll have a place to stay. I went to Women & Brigham for an initial lung transplant consult and left feeling pretty anxious about the whole thing. Soon after that my diagnosis changed to autoimmune and my pulmonologist thinks there’s a good chance we can get the fibrosis into remission.…[Read more]

  • Pamela Green posted a new activity comment 1 year, 5 months ago

    I am finding this the most interesting topic so far as I am only 1 week away from my final evaluation at Temple University for transplant.
    These O2 numbers are so difficult to control. All I can do is sit or lie down and wait as soon as I move from 92/93 resting I can drop to low 80’s high 70′ which is scary. When showering my partner has hooked…[Read more]

  • Great subject Katie, ( @katiebagshawe )

    Are you in Derbyshire? I am a Yorkshire lass living in the USA and as I am limited as to what I can do, my main pleasure is Netfix or Prime and watching the BBC detective programs like DCI Banks, George Gently etc.

    It so nice to see the countryside, places I recognize and my accent which is fading…[Read more]

  • Daryl, So good to hear from you and glad to hear that you are doing so well.

    My dilemma right now is that although they will evaluate me at Temple. They do not take my Supplemental United health

    care, so now I am stumped as to what to do. I have had it for 6 years and have never not had it accepted.

    It’s like pulling teeth trying to get hold of…[Read more]

  • ( @cynthia-comery-ferguson )

    Hello Cynthia, Mass General said age was the reason which is why I am so disappointed. 2 years ago I was told I was a good candidate as there is nothing else wrong with me, no meds, not overweight, not diabetic.Never smoke, don’t drink.

    They work together with Brigham and Women’s and checked with them but have…[Read more]

  • Hello Les V

    Thank you so much for all that valuable information. It’s a lot to digest so give me a few days and I will contact you by e-mail.

    I have just had all my records from Mass General anomy primary care doctor mailed to Temple and by Monday hope to have date for evaluation.

    I was not aware one could apply at more than one centre ( should…[Read more]

  • Having just been turned down by Mass General at only  72 and led to believe I was a good candidate.

    Where to go from here.

    I have been in touch with Mark Koziol who gave me some advice and my Primary care doctor who is excellent is trying to help and told me that it often comes down to your local support system. Others have mentioned some…[Read more]

  • Hello Mark, Yes I am on oxygen. 2 liters at night and around 3-4 doing tasks, making the bed etc, which can take up to 40 minutes, stopping to rest as I go.

    I will take your advice and get out of the house as much as possible. I will contact my senior center and see if they have a bus service that goes to the senior center and the library.

    I…[Read more]

  • I can certainly understand the shrunken world as this week my car is being detailed and then sold so then I will have to rely on others to go anywhere. Even short trips to the library to sit and do a jigsaw will have to go.

    Time to start on my list of classics I promised myself to read!

    I was diagnosed almost 2 years ago but looking back had…[Read more]

  • Bill ( @bill-hunt) I am most likely starting Esbriet next week. Reluctantly as my reaction to Ofev was not pleasant and I was taken off after 3 months due to increased liver enzymes.

    May I ask you were you found all your information regarding Esbriet.

    I was not good on Ofev. If I did not have the “runs” I was vomiting, or nosebleeds. If I sat…[Read more]

  • Pamela Green posted a new activity comment 1 year, 11 months ago

    Cynthia, I did reply to your questions re oxygen suppliers in Rhode Island but for some reason I have not seen my reply.
    I live in North Kingstown and use Apria who are on the East Side I believe.
    They have been excellent both with the home concentrator and the Inogen portable unit. They cover the country which is important to me as we leave in…[Read more]

  • Pamela Green posted a new activity comment 1 year, 11 months ago

    Hello Mark, I have just replied to Cynthia but it has not been posted and am wondering what I did wrong. Does it take time to show up?
    Pamela

    • I am finding this the most interesting topic so far as I am only 1 week away from my final evaluation at Temple University for transplant.
      These O2 numbers are so difficult to control. All I can do is sit or lie down and wait as soon as I move from 92/93 resting I can drop to low 80’s high 70′ which is scary. When showering my partner has hooked…[Read more]

  • Pamela Green posted a new activity comment 1 year, 11 months ago

    Thank you Mark, from what I have already seen on these forums, many of you are better informed than many primary care doctors.
    I look forward to joining in when appropriate and woodier if Cynthia would be kind enough to contact me.
    I too live in Rhode Island and Auto Immune disease has just been ruled out in my case. Maybe we can meet up sometime.I am 72

    • Thank you Pamela, the important thing to remember is each person will have different experiences with our disease. What works for one may not work for another. Thank you for commenting and please engage when you feel comfortable. Mark

      • Hello Mark, I have just replied to Cynthia but it has not been posted and am wondering what I did wrong. Does it take time to show up?
        Pamela

        • I am finding this the most interesting topic so far as I am only 1 week away from my final evaluation at Temple University for transplant.
          These O2 numbers are so difficult to control. All I can do is sit or lie down and wait as soon as I move from 92/93 resting I can drop to low 80’s high 70′ which is scary. When showering my partner has hooked…[Read more]

  • Pamela Green became a registered member 1 year, 11 months ago

    • Hello Pamela, welcome to the pulmonary fibrosis forum. Thank you for joining.

      • Thank you Mark, from what I have already seen on these forums, many of you are better informed than many primary care doctors.
        I look forward to joining in when appropriate and woodier if Cynthia would be kind enough to contact me.
        I too live in Rhode Island and Auto Immune disease has just been ruled out in my case. Maybe we can meet up sometime.I am 72

        • Thank you Pamela, the important thing to remember is each person will have different experiences with our disease. What works for one may not work for another. Thank you for commenting and please engage when you feel comfortable. Mark

          • Hello Mark, I have just replied to Cynthia but it has not been posted and am wondering what I did wrong. Does it take time to show up?
            Pamela

            • I am finding this the most interesting topic so far as I am only 1 week away from my final evaluation at Temple University for transplant.
              These O2 numbers are so difficult to control. All I can do is sit or lie down and wait as soon as I move from 92/93 resting I can drop to low 80’s high 70′ which is scary. When showering my partner has hooked…[Read more]

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