Forum Replies Created

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  • allan-byron

    Member
    December 19, 2023 at 3:10 pm in reply to: Pirfenidone (Generic for Esbriet) CostPlus

    Thanks for info I’ll check it right away, the foundation that help me before don’t have funds.

    Allan Byron

  • allan-byron

    Member
    February 23, 2022 at 1:03 pm in reply to: “Breathless” Transplant News

    Best of luck on your journey. We will have u oun our prayers

    Allan Byron

  • allan-byron

    Member
    October 5, 2021 at 4:49 pm in reply to: Ipf or not

    Hello folks,

    hD same experience, Kaiser pulmonologist diagnosed me as having rheumatoid arthritis with auto immune disorder and started me on cellceph after doing a lung biopsy. I ask for a second opinion and went to UCSF. The pulmonologist diagnose me with IPF and started me with Perfinidone 801 3x a day.

    My Kaiser pulmonologist is doing a quarterly follow up on me, and I do chest X-ray, PFT, 6minute walk and lab test every 4 months. My challenges are refractory coughing, with phlegm. I requested a sputum culture and stain , but only Squamous cells were found. , which they said is normal flora, so no special meds was given to me. I currently take Tessalon pearls for cough, and sometimes mucinex tab or delays syrup which help. I also take Alcestis spray. For my persistent nasal drip, Flonase is what I take.

    if anybody had better suggestions pls share

    Allan Byron

  • allan-byron

    Member
    November 27, 2023 at 4:33 pm in reply to: Using Morphine

    Morphine is recommended to be used under tongue, and if low dose is not working use the higher dose as per doctors advise. I use it only as needed

    Allan Byron

  • allan-byron

    Member
    November 22, 2023 at 2:39 pm in reply to: Using Morphine

    I only take morphine on severe SOB which i currently don’t have. I took it twice before and had severe constipation.

  • allan-byron

    Member
    September 14, 2023 at 9:36 pm in reply to: Lung Transplant

    Amen brother

  • allan-byron

    Member
    September 14, 2023 at 9:35 pm in reply to: Lung Transplant

    I am 75 and want to have a transplant, but they said I not a good candidate, because of my condition I may not recover operation. Wondering if other hospitals can consider me.

  • allan-byron

    Member
    September 14, 2023 at 9:31 pm in reply to: Lung Transplant

    I am 75 years old and had been declined by UCSF, UCLA and Stanford. I also have pulmonary Arteral Hypertension, frail had a bypass 13 years ago and they said I’m not a good candidate . I’m wondering if Mayo Jackson will consider me or any hospitals. I am willing to try anything because I’m deteriorating. Any su will be appreciated.

  • allan-byron

    Member
    June 2, 2023 at 2:46 pm in reply to: Cleveland Clinic Info

    Was declined by UCLA because Im 75, frail and had triple bypass and also have coronary stenosis. Trying to go to Cleveland clinic, because heard they do simultaneously stenosis repair and lung transplant. Any input will be appreciated

  • allan-byron

    Member
    September 29, 2022 at 5:54 pm in reply to: Dealing with Phlegm.

    Went to stem cell therapy in Arizona for treatment. It didn’t help a bit, just wasted money and time.

     

    Allan Byron

     

  • allan-byron

    Member
    June 21, 2022 at 4:34 pm in reply to: Zinc in the Role of Lung Fibrosis

    i will try to use the supplement, if it help it’s great. At this juncture bee are open to new therapies. What do we have to loss?

    Allan Byron

  • allan-byron

    Member
    March 9, 2022 at 5:55 pm in reply to: Deep-breathing exercises

    Hello
    Will try it myself, thanks

    Allan Byron

  • allan-byron

    Member
    February 23, 2022 at 2:27 pm in reply to: “Breathless” Transplant News

    Hello,
    Thanks for a very inspiring story, I will be 74 soon and try to get a transplant. UCSF declined me, but
    I called UCLA for a second opinion. I had an echocardiogram, and PFT, which they requested before making an evaluation.
    I hope I will be reconsidered.

    Allan Byron

  • allan-byron

    Member
    February 23, 2022 at 2:04 pm in reply to: “Breathless” Transplant News

    Very inspiring, thanks for sharing

    Allan Byron

  • allan-byron

    Member
    February 17, 2022 at 4:34 pm in reply to: Extreme Fatigue

    I just take green tea and it Worldcraft2 me

    Allan Byron

  • allan-byron

    Member
    December 7, 2021 at 3:59 pm in reply to: Pulmonary Rehabilitation

    Thanks so much for the info

    allan

  • allan-byron

    Member
    November 4, 2021 at 11:15 pm in reply to: WEI Institute Natural Care of Chronic Lung Diseases

    Hello,

    The 3 to 5 yes prognosis that they say is old info, long time ago. I was listening to a seminar by a pulmonologist and said that patient s  now can even live more than 10 years today. I think we all need PMA. Positive mental attitude

    Allan Byron

  • allan-byron

    Member
    October 28, 2021 at 10:56 pm in reply to: Post-nasal Drip: Another Ailment to Deal With

    I also have regular post Masai drip in the morning and I use Flonase, and

    mose clips which help.

    I may also try Claritin it it gets worse.

    Allan Byron

  • Hello,

    Thanks for those information

    Allan

  • allan-byron

    Member
    October 5, 2021 at 5:03 pm in reply to: Do others with IPF cough for 20 minutes every morning?

    Hello,

    Have the same issue, which is refractory coughing most of the day. I have taken different cough meds, but they are only palliatives. I still go to the gym at least 3x a week and do threadmill and weights for one hour.  I observed I easily get tired not like before.

    Allan Byron

  • allan-byron

    Member
    September 29, 2021 at 4:17 pm in reply to: Do others with IPF cough for 20 minutes every morning?

    Hello,

    I also cough  and have sinus drips inthhe morning. K am currently on Perfinidone 801 mg 3x a day. I also have recurrent cough during the day, so I always have halls candy

    which helps me.

    Allan Byrin

  • Hellos folks,

    I just stopped the Wei regimen after 3 months because I didn’t see any effect. This is my second time of using it. The first time I used it also for 3 months, with no effect , and waited for another 6  months, and used it again, thinking it may work. To me I just wasted my money. I hope others may have better luck.

    Allan Byron

  • allan-byron

    Member
    September 2, 2021 at 8:54 pm in reply to: when rejected for transplant

    Hello Dennis,

    Im 73 years old, and live in SF Bay area, who was the person you contacted for your transplant?  Any info you can provide will be appreciated. Thanks a lot

    Allan Byron

  • allan-byron

    Member
    August 31, 2021 at 4:34 pm in reply to: when rejected for transplant

    Hello folks,

    I am currently 73 year s old and live in the SF nay area, I hope some pet can give me idea if I can still quality and where can I go for evaluation?

    Allan Byron

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