• Profile photo of CRoberts1CRoberts1
    Member
    #171204900720

    “End-stage” CF means different things to different people. I know some doctors who won’t apply the term until the patient is literally days from death, and others who consider anyone on the transplant list to be “end-stage” b/c their survival is considered to be compromised enough to warrant drastic, “life saving” surgery. In other words: there is no one place where CFers suddenly cross over into end-stage. My CF doctor, for example, has NEVER used the term around me or to refer to me so far as I know, whereas my transplant doctors constantly refer to transplant as a treatment option for people with end-stage cystic fibrosis who have tried every other treatment option…so by implication they’re including everyone on the active list.

    Personally, I’m not sure whether the label does much good. Your sister sounds like she is in a rough place right now with her CF, but it may well be that her doctors feel that labeling things won’t add much to her treatment. And people do sometimes, unfortunately, get to really rough places before transplant — but that doesn’t mean her miracle won’t come.

    I can only imagine how hard this is for you. I’ll be thinking of your sister and sending good thoughts to her that lungs come SOON!

    Profile photo of CRoberts1CRoberts1
    Member
    #171205033599

    “End-stage” CF means different things to different people. I know some doctors who won’t apply the term until the patient is literally days from death, and others who consider anyone on the transplant list to be “end-stage” b/c their survival is considered to be compromised enough to warrant drastic, “life saving” surgery. In other words: there is no one place where CFers suddenly cross over into end-stage. My CF doctor, for example, has NEVER used the term around me or to refer to me so far as I know, whereas my transplant doctors constantly refer to transplant as a treatment option for people with end-stage cystic fibrosis who have tried every other treatment option…so by implication they’re including everyone on the active list.

    Personally, I’m not sure whether the label does much good. Your sister sounds like she is in a rough place right now with her CF, but it may well be that her doctors feel that labeling things won’t add much to her treatment. And people do sometimes, unfortunately, get to really rough places before transplant — but that doesn’t mean her miracle won’t come.

    I can only imagine how hard this is for you. I’ll be thinking of your sister and sending good thoughts to her that lungs come SOON!

    Profile photo of CRoberts1CRoberts1
    Member
    #171205130371

    “End-stage” CF means different things to different people. I know some doctors who won’t apply the term until the patient is literally days from death, and others who consider anyone on the transplant list to be “end-stage” b/c their survival is considered to be compromised enough to warrant drastic, “life saving” surgery. In other words: there is no one place where CFers suddenly cross over into end-stage. My CF doctor, for example, has NEVER used the term around me or to refer to me so far as I know, whereas my transplant doctors constantly refer to transplant as a treatment option for people with end-stage cystic fibrosis who have tried every other treatment option…so by implication they’re including everyone on the active list.

    Personally, I’m not sure whether the label does much good. Your sister sounds like she is in a rough place right now with her CF, but it may well be that her doctors feel that labeling things won’t add much to her treatment. And people do sometimes, unfortunately, get to really rough places before transplant — but that doesn’t mean her miracle won’t come.

    I can only imagine how hard this is for you. I’ll be thinking of your sister and sending good thoughts to her that lungs come SOON!

    Profile photo of CRoberts1CRoberts1
    Member
    #171205266474

    “End-stage” CF means different things to different people. I know some doctors who won’t apply the term until the patient is literally days from death, and others who consider anyone on the transplant list to be “end-stage” b/c their survival is considered to be compromised enough to warrant drastic, “life saving” surgery. In other words: there is no one place where CFers suddenly cross over into end-stage. My CF doctor, for example, has NEVER used the term around me or to refer to me so far as I know, whereas my transplant doctors constantly refer to transplant as a treatment option for people with end-stage cystic fibrosis who have tried every other treatment option…so by implication they’re including everyone on the active list.

    Personally, I’m not sure whether the label does much good. Your sister sounds like she is in a rough place right now with her CF, but it may well be that her doctors feel that labeling things won’t add much to her treatment. And people do sometimes, unfortunately, get to really rough places before transplant — but that doesn’t mean her miracle won’t come.

    I can only imagine how hard this is for you. I’ll be thinking of your sister and sending good thoughts to her that lungs come SOON!

    Profile photo of CRoberts1CRoberts1
    Member
    #171205397786

    “End-stage” CF means different things to different people. I know some doctors who won’t apply the term until the patient is literally days from death, and others who consider anyone on the transplant list to be “end-stage” b/c their survival is considered to be compromised enough to warrant drastic, “life saving” surgery. In other words: there is no one place where CFers suddenly cross over into end-stage. My CF doctor, for example, has NEVER used the term around me or to refer to me so far as I know, whereas my transplant doctors constantly refer to transplant as a treatment option for people with end-stage cystic fibrosis who have tried every other treatment option…so by implication they’re including everyone on the active list.

    Personally, I’m not sure whether the label does much good. Your sister sounds like she is in a rough place right now with her CF, but it may well be that her doctors feel that labeling things won’t add much to her treatment. And people do sometimes, unfortunately, get to really rough places before transplant — but that doesn’t mean her miracle won’t come.

    I can only imagine how hard this is for you. I’ll be thinking of your sister and sending good thoughts to her that lungs come SOON!

    Profile photo of JoshRules4JoshRules4
    Member
    #171204900718

    We were told last April my daughter was in end stage, so I am not sure it means same to all doctors. Her health detoriated after birth of her son, he will be 5 in July. She has had PFT lately 23-29, winter was hard this year for us seemed like we were in hospital at least 1 mos. She is on O2 10 liters for Bipap which she wears at night only and she will put it on if she doesnot feel right. Her regular O2 since Feb is 10 but we are in process of seeing if she tolerates lower. When we go out if she does any walking she wears full o2 face mask and ususally has tank on 12-15. I am not sure if this helps.

    Profile photo of JoshRules4JoshRules4
    Member
    #171205033598

    We were told last April my daughter was in end stage, so I am not sure it means same to all doctors. Her health detoriated after birth of her son, he will be 5 in July. She has had PFT lately 23-29, winter was hard this year for us seemed like we were in hospital at least 1 mos. She is on O2 10 liters for Bipap which she wears at night only and she will put it on if she doesnot feel right. Her regular O2 since Feb is 10 but we are in process of seeing if she tolerates lower. When we go out if she does any walking she wears full o2 face mask and ususally has tank on 12-15. I am not sure if this helps.

    Profile photo of JoshRules4JoshRules4
    Member
    #171205130370

    We were told last April my daughter was in end stage, so I am not sure it means same to all doctors. Her health detoriated after birth of her son, he will be 5 in July. She has had PFT lately 23-29, winter was hard this year for us seemed like we were in hospital at least 1 mos. She is on O2 10 liters for Bipap which she wears at night only and she will put it on if she doesnot feel right. Her regular O2 since Feb is 10 but we are in process of seeing if she tolerates lower. When we go out if she does any walking she wears full o2 face mask and ususally has tank on 12-15. I am not sure if this helps.

    Profile photo of JoshRules4JoshRules4
    Member
    #171205266473

    We were told last April my daughter was in end stage, so I am not sure it means same to all doctors. Her health detoriated after birth of her son, he will be 5 in July. She has had PFT lately 23-29, winter was hard this year for us seemed like we were in hospital at least 1 mos. She is on O2 10 liters for Bipap which she wears at night only and she will put it on if she doesnot feel right. Her regular O2 since Feb is 10 but we are in process of seeing if she tolerates lower. When we go out if she does any walking she wears full o2 face mask and ususally has tank on 12-15. I am not sure if this helps.

    Profile photo of JoshRules4JoshRules4
    Member
    #171205397785

    We were told last April my daughter was in end stage, so I am not sure it means same to all doctors. Her health detoriated after birth of her son, he will be 5 in July. She has had PFT lately 23-29, winter was hard this year for us seemed like we were in hospital at least 1 mos. She is on O2 10 liters for Bipap which she wears at night only and she will put it on if she doesnot feel right. Her regular O2 since Feb is 10 but we are in process of seeing if she tolerates lower. When we go out if she does any walking she wears full o2 face mask and ususally has tank on 12-15. I am not sure if this helps.

    Profile photo of bethylovebethylove
    Member
    #1742523

    My sister and I both have CF. She’s two years older than I am and always has been a bit worse. She’s currently on the lung transplant list and has been waiting for over a year, and she’s only ever been called once as a trial run. My question is when do they determine CF to be ‘end stage CF.’ This past hospital admission she’s been to the ICU 2 times, with 02 sats in the 50 going in and out of consciousness, and she’s needed 2 blood transfusions because of extremely low hemoglobin. She’s on bi-pap 24 hours a day at a really high setting because 10 L of forced air oxygen wasn’t enough. =\I think her current PFT’s are somewhere in the upper teens. I feel like she’s finally dropped into the category of ‘end-stage’ CF but no one is saying anything different, they’re just going about it like nothing has changed. I’m just wondering if I’m completely off the ball and just being a paranoid sister? Or if my worries actually have some meaning to it. Any insight would be greatly appreciated.

    *oh and on the off chance that you read this Jpie, I’m sorry to post this here for you to find, but I couldn’t bring myself to ask you or Dad, and god knows mom’s no help. And me, talk to Dr. P without punching her? ha! So, I was stuck. And I sought advice here. *

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