Forum Replies Created

  • pamela-green

    Member
    December 17, 2019 at 1:33 pm in reply to: Am I Too Old for A Lung Transplant?

    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

    Member
    October 25, 2019 at 9:09 am in reply to: What You Enjoy…

    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 fast.

    You have inspired me to work on some of my older hobbies.

    Be well.

    Pamela.

     

     

  • pamela-green

    Member
    October 16, 2019 at 7:40 am in reply to: Comparing Lung Transplant Centers

    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 anyone to discuss this as we are in the middle of enrollment season

     

  • pamela-green

    Member
    October 10, 2019 at 11:31 am in reply to: Comparing Lung Transplant Centers

    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 have made more copies of everything)

    That’s were I am right now and I feel to be moving forward after the disappointment of Mass General saying I was a good candidate for 2 years and all of a sudden dealing to pursue the evaluation.

    I will be in touch.

    Pamela

     

  • pamela-green

    Member
    October 5, 2019 at 12:33 pm in reply to: Comparing Lung Transplant Centers

    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 hospital don’t want to upset their numbers and others are trying to build their reputation.

    So many things to consider.

    I live in Rhode Island und would be grateful for any input.

    What is considered a clear definition of support system, for those who have been through this

  • pamela-green

    Member
    August 7, 2019 at 10:56 am in reply to: How do you feel?

    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 enjoy reading your posts they are inspiring and show us just how far we can go.

    Pamela Green

  • pamela-green

    Member
    August 7, 2019 at 8:19 am in reply to: How do you feel?

    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 symptoms at least a year previous so it has been a gradual progression that one gets used to.

    One of the hardest parts for me is that everyone says you look great and yet have no idea what we go through on a daily basis. It is so hard to describe and they don’t see me having a bout of coughing that exhausts me. I used to feel like a person, now I feel like an experiment!

    However here I am another day, Netflix or a book?

    Good to hear the stories that help us get through.

    Pamela Green

  • pamela-green

    Member
    October 10, 2019 at 1:57 pm in reply to: Comparing Lung Transplant Centers

    ( @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 offered up no further suggestions.

    I am looking at Temple in PA as their program is excellent and I have made contact with 2 men who have recently had transplants. One was very sick with many complications.

    My records are transferred so hopefully next week I will be contacted for an appointment.

    Keep pushing, be persistent.

    Pamela

     

     

  • pamela-green

    Member
    June 18, 2019 at 1:48 pm in reply to: Starting Esbriet

    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 down I feel asleep. I really was a waste of space and 2 days after stopping I felt great.

    An Auto immune connection has just been ruled out and that’s why Mass General want me on Esbriet or Prednisone.

    I am reluctant as although I feel I should try and also feel better with quality rather than quantity of life.

    A new grandchild gives me incentive to get to October so I can visit him in Canada.

    I wonder if my side effects are due to my weight now 107 pounds.

    Feedback from anyone would be really helpful.

     

    My prayers are with all who face these difficult decisions

    Pamela