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  • Test results and IPF

    Posted by jea9 on June 9, 2024 at 7:58 pm

    My husband was diagnosed with IPF about 2 1/2 years ago. He has gone for chest exrays and breathing tests every 6 months and blood work every 3 months and started OFEV when he was diagnosed. He had all the tests done in November 2023 and the results were the same as May of 2023. He contracted Covid in December of 2023 and in February his breathing had deteriorated. He went through all the tests again in May of this year and they showed no change from November of 2023. So, why is his breathing worse and his Dr. had no answer and has put him on oxygen. Has anyone else had this happen where the tests are okay but the breathing deteriorates? Were you given a reason why? Could Covid cause this without more scarring of the lungs? We are confused.

    😟

    Linda Maguire replied 1 month ago 9 Members · 8 Replies
  • 8 Replies
  • Bud

    Member
    June 11, 2024 at 9:26 am

    Hi

    My name is Derek. I was diagnosed in 2018 and have been on <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>Esbriet® (pirfenidone) 801mg 3 times a day.

    <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>My results have been much like your husbands but my breathing has changed and I get breathless far quicker now. My last CT scan was in February 2024 and showed a slight progression with a little honeycombing for the first time.

    <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>I am 67 and have had IPF for just over 7 yrs. The Pirfenidone has definitely saved my life and for me has slowed the Fibrosis down considerably. I don’t care about any side effects…. I suck it up. The drug is keeping me alive.

    <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>I have concluded in my experience that ageing is a contributor to my worsening breathing as well as a post nasal drip. The post nasal drip has become my demon but I am slowly getting it under control.

    <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>I also force myself to pace myself…. go slower.

    <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>Monitor the blood oxygen levels. Buy a finger monitor (a good) and check levels. If low, rest slow down.

    <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>Any infection, cold or flu will have an effect on your lung function.

    Stay strong, positive and don’t be afraid to admit that you cannot do what you used to.

    Blessing

    Derek

    🙏

    • Marfa

      Member
      June 17, 2024 at 5:32 pm

      Hi, my name is Marcia. I was diagnosed with IPF in 2020. I noticed in your post that you deal with post nasal drip and that you pretty much have it under control. I also feel like I’m dealing with post nasal drip. Can you tell me what you are doing to help with that? Thank you!

  • Laura Nash

    Member
    June 11, 2024 at 3:30 pm

    A chest x-ray is not a good diagnostic tool for IPF. Even a basic CT Scan can be misleading. There is a special high resolution CT Scan that will really explain what is going on. Shortness of breath could be from de-conditioning. DAILY exercise is critical. If his blood oxygen levels and PFTs are dropping – especially after COVID – I would reach out to a a hospital that specializes in lung transplants. They have many things they can do to delay or prevent the need for transplant. It is a huge bonus to have them follow you (your husband).

    I was diagnosed 2 1/2 years ago and after oxygen after two lung biopsies I was told I may never need oxygen – it is not progressing. Then I got COVID and the decline was steady. I am very gratefully on a transplant list, but I do wish I was connected with the transplant team when I got COVID – actually before would have been even better. When I started with the transplant team the director said that he could have done a lot for me if I had come sooner.

    Good luck to your husband!!


  • Blanche Brunk

    Member
    June 11, 2024 at 3:40 pm

    Hi!

    I was diagnosed( with high resolution Chest CT) with PF in November 2022. In February 2023 had an angry covid with chest symptoms lasting 7 weeks . In May I developed a serious bronchial infection treated with steroids and 2 rounds of antibiotics. I coughed so much I tore intercostal muscles. Ouch!

    It was tough all of it. I had another CT in November 2024, which showed no change from the previous year. Yay and a surprise. Doctor added O2 at night and with exertion at that visit.

    The doctor said at that same visit that covid had “kicked my butt”. He said I got sick after that because of the impact of covid on my lungs and in my immune system.

    So that is my experience. I am going along okay now, walking .5 to one mile and doing water aerobics 3-4 times a week.


    I am bothered by the air here in AZ now that it is hot!

    Crossing my fingers no new symptoms.

    Hope you continue to maintain too. May God bless you and protect you

    Blanche Brunk

  • Meredith

    Member
    June 11, 2024 at 4:01 pm

    To all of us who have ILD or IPF. Every person’s disease is a little different from others.

    There is no cure for incurable diseases.

    Ofev and Esbriet are meant to slow down the progress of scarring. Other drugs are to deal with ameliorating symptoms.

    The only future I allow my self to think about is tomorrow, some days it’s better just to stay in this day.

    Many articles say the best things to do are to stay hydrated, exercise some, get your vaccinations, try to stay healthy. If you think your doctor is incompetent get another one. If you’re ok with your Doc trust her.

    I’ll take my real, live doctor over Mr Kxctmpa from the internet any day Enjoy your life while you’re having it

    You didn’t cause IPF, can’t cure it, and can’t control it

    My biggest issue is letting myself believe some miracle drug is right around the corner in the meantime stand in the place that you are!


    Meredith



  • Adele Friedman

    Member
    June 18, 2024 at 2:08 pm

    You may have heard of Noah Greenspan of the Cardiopulmonary Wellness Center in NYC. He is always saying breathing is multifactorial. PFTs provide a good snapshot, and are good for tracking trends over time. But any given PFT can be on a “good” day and another, on a “bad” day. So worry about the trend over time. As another poster said, xray is not a good way to monitor PF progression, whatever its cause. Other variable factors: weight gain/loss, high carb or bigger meal shortly before testing, altitude, overall physical condition (becoming less active, which is easy to do) may contribute to decline, among many other “multifactorials”.

  • don-moffett

    Member
    June 18, 2024 at 2:24 pm

    I have had IPF for 3 years and been taking 150mg OFEV twice a day since I was diagnosed. I have been doing all the normal testing, liver, lung function, X-rays and CT scans. A month ago I met with my doctor to review the results and he informed me that I had progressed to stage 3, and he had run out of options and was going to refer me to a specialty hospital for a consultation and/or treatment. He said I have to accept that there are not that many patients with IPF so a specialty hospital has more access to resources that he does. I thought, now you tell me. I live in Savannah, Ga. So fortunately I got an appointment at MUSC in Charleston, after my initial visit and a full day of tests, I now have oxygen when I do Activities, I am doing Physical Therapy, and I will find out in two weeks if I am accepted into one of two clinical trials I was enrolled in. On the 25th of June I have a day of testing and a day or two after that I will know. So my advice is get into a specialty hospital to treat you. They have access to trials and have amazing doctors and equipment. It is your life, take charge, no matter how much you like your current doctor.

  • Linda Maguire

    Member
    June 19, 2024 at 10:24 am

    Covid can definitely cause a decrease in lung function. Has your husband considered pulmonary rehab to increase his stamina?

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