Forum Replies Created

  • maka-rebagliati

    Member
    January 21, 2021 at 11:46 am in reply to: transplant evaluation criteria

    Hi Trish, thank you for sharing. My husband was approved for a transplant yesterday. He deteriorated rapidly between October and December. He went into hospital mid December and they told us that he did not meet the 6 minute walk requirement plus his age, he is 74. However they kept him in the hospital with a treatment of a corticoide and physiotherapy and he improved almost immediately. After chequing everything else, yesterday they approved him. Whether he makes it or not to the transplant, his IPF is advanced, he is in great spirits which is a change from how he was feeling at the beginning of December. Good luck to your husband, lets hope everything works out.

  • maka-rebagliati

    Member
    November 25, 2020 at 1:32 pm in reply to: Do others with IPF cough for 20 minutes every morning?

    My husband suffers from iPF and he is now on oxygen. It is so sad seeing people looking at us with fear when he coughs even though they can see the oxygen tank and he wear a face shield. Actually we went to see our GP this morning and even though we were the only ones on the waiting area, one of the other assistants kept looking at us constantly. I asked our doctor’s assistant to move us to a room while we waited. Do people actually think that somebody with an oxygen tank could have covid? Today I thought about putting a sign hanging from his walker that says PULMONARY FIBROSIS- NO CONTAGIOUS!

    I don’t know but it makes my husband very uncomfortable.

    thank you for sharing your experiences

  • maka-rebagliati

    Member
    November 25, 2020 at 1:22 pm in reply to: Do others with IPF cough for 20 minutes every morning?

    Hello James, my husband is now in an advanced stage of IPF and he coughs for at least 20 minutes in the morning which leaves him exhausted, he is on oxygen 24/7. Nothing seems to help but as Susan mentioned, he thinks it is related to post nasal drip. Actually today the GP gave him a prescription for nasal drops, hopefully they will help.
    thanks for sharing your experiences!

  • maka-rebagliati

    Member
    November 10, 2020 at 1:03 pm in reply to: DEALING WITH OFEV side effects

    @marianne

    Hello – I think your body might adjust somehow, try eating small amounts more often. My husband (74) recently switched from Esbriet to OFEV he is trying to eat something every  3/4 hours.  He is experiencing vomiting, has anybody experience this with OFEV? It is not related to what he eats, it just happens.

     

  • maka-rebagliati

    Member
    October 29, 2020 at 12:47 pm in reply to: Afraid of the unknown

    This is the first time I write something but I have been reading the news for a long time.
    My husband was diagnosed with IPF by chance several years ago, they did an x-ray for something else and they discovered he had IPF.  He was taking Esbriet which worked very well until this year, now he is taking Ofev and he is on supplemental oxygen 24/7 since August. However as soon as he moves from one room to the next he goes out of breath and he coughs violently. The last time he saw the pulmonologist (I was not allowed in because of covid) he got a prescription for a cough syrup which really does not help. He has now been referred to the Interstitial Lung Disease clinic at Toronto General Hospital, to get the initial appointment will take several months, as most medical  appointments in Ontario, Canada. I am very scared because I do not know at what stage of the disease he is. What can happen when he starts coughing so much? Sometimes he vomits from so much coughing and he already eats very little. Anybody is going through the same? Thanks
    Maka Rebagliati