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Thread: End Stage CF?

  1. #1

    End Stage CF?

    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. *

    0 Not allowed!

  2. #2

    End Stage CF?

    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. *

    0 Not allowed!

  3. #3

    End Stage CF?

    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. *

    0 Not allowed!

  4. #4

    End Stage CF?

    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. *

    0 Not allowed!

  5. #5

    End Stage CF?

    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.
    <br />
    <br />*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. *

    0 Not allowed!

  6. #6

    End Stage CF?

    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.

    0 Not allowed!

  7. #7

    End Stage CF?

    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.

    0 Not allowed!

  8. #8

    End Stage CF?

    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.

    0 Not allowed!

  9. #9

    End Stage CF?

    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.

    0 Not allowed!

  10. #10

    End Stage CF?

    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.

    0 Not allowed!

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