Dianne Jones
Forum Replies Created
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Good morning. When I read about funding for patients through NORD. I called and spoke with someone and I gave her my details and how expenses have increased due to COVID-19. She explained that she was only taking information and that someone else would be getting back to me. I realized that there are many that qualify, therefore I did not get overly concerned when someone did not get back to me in a timely manner. I have not heard back. I exoplained that I have to pay for delivery and someone to come into my home to help. I am on oxygen and many household duties I am not able to preform without help. Please advise what direction or my next step to get help. Thank you and blessings.
Marcia J.
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Hello, I am sorry to hear you are having so much trouble being diagnosed. My doctor started with a chest x-ray, moved to the CT scan or MRI. From that I went to a surgeon for a lung biopsy and that gave my pulmonologist the definitive answer. February of 2019 I started oxygen but I have been on Prednisone for about eight years, which has basically kept me stable. There are times when I have a flare-up and the mg’s change to 20-25 up from 7.5 mg of prednisone for 1-2 weeks, then go back to by regular dosage. I will always continue to pray for the pulmonary fibrosis community, hang in there and keep the faith.
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Hello Charlene. I was diagnosed with pulmonary fibrosis seven years ago and with pulmonary hypertension 2 1/2 years ago. I was hospitalized on February 14 because of my breathing. I too am on 02. I used the 02 until about 2 months ago, doing well. This past Sunday it was so hot in the church that I could barely breathe. I went to my doctor yesterday and he wanted to put me back in the hospital. I begged not to go and he finally agreed. However, I must stay on my 02 and once again on massive dosages of Prednisone. He said I was in the beginning stage of relapse. I hate that it happened, but glad that it got caught before the full-blown relapse. When I was diagnosed after having a lung biopsy, I did not know what it was. The doctor at that time did not know that much either, he asked me to read about it on the internet. I have since changed doctors, excellent and very thorough. I get frustrated sometimes because he is through, he leaves no stone unturned. He knows my story. I pray we all does well with the ailment. I have good insurance that pays 100% for everything except medicine. I NEED help. Do you are anyone else knows where to go to get help for medicine? I have used Needymeds but………Thanks for listening. Marcia Jones