• Profile photo of LizaLiza
    Participant
    #171204826496

    Hi Elizabeth, I just wanted to say that I am sorry that you are needing a 2nd transplant. I hope your wait will be a short one. I don’t have any suggestions with your g-tube, neither of my girls have had one. I’ll be thinking about you.

    Mom to Anna'-forever 24 yrs.- CF, CFrD, double lung TX 7.'07 & 4.'11, & Rachel 25 yrs - CF, CFrD, double lung Tx 4/30/2016.

    Profile photo of LizaLiza
    Participant
    #171204967868

    Hi Elizabeth, I just wanted to say that I am sorry that you are needing a 2nd transplant. I hope your wait will be a short one. I don’t have any suggestions with your g-tube, neither of my girls have had one. I’ll be thinking about you.

    Mom to Anna'-forever 24 yrs.- CF, CFrD, double lung TX 7.'07 & 4.'11, & Rachel 25 yrs - CF, CFrD, double lung Tx 4/30/2016.

    Profile photo of LizaLiza
    Participant
    #171205064673

    Hi Elizabeth, I just wanted to say that I am sorry that you are needing a 2nd transplant. I hope your wait will be a short one. I don’t have any suggestions with your g-tube, neither of my girls have had one. I’ll be thinking about you.

    Mom to Anna'-forever 24 yrs.- CF, CFrD, double lung TX 7.'07 & 4.'11, & Rachel 25 yrs - CF, CFrD, double lung Tx 4/30/2016.

    Profile photo of LizaLiza
    Participant
    #171205200799

    Hi Elizabeth, I just wanted to say that I am sorry that you are needing a 2nd transplant. I hope your wait will be a short one. I don’t have any suggestions with your g-tube, neither of my girls have had one. I’ll be thinking about you.

    Mom to Anna'-forever 24 yrs.- CF, CFrD, double lung TX 7.'07 & 4.'11, & Rachel 25 yrs - CF, CFrD, double lung Tx 4/30/2016.

    Profile photo of LizaLiza
    Participant
    #171205332101

    Hi Elizabeth, I just wanted to say that I am sorry that you are needing a 2nd transplant. I hope your wait will be a short one. I don’t have any suggestions with your g-tube, neither of my girls have had one. I’ll be thinking about you.

    Mom to Anna'-forever 24 yrs.- CF, CFrD, double lung TX 7.'07 & 4.'11, & Rachel 25 yrs - CF, CFrD, double lung Tx 4/30/2016.

    Profile photo of MarjoleinMarjolein
    Member
    #171204826354

    Hi Elizabeth

    i’m sorry to hear you are having to go for a second transplant. I really hope you don’t have to wait too long and that you will have the chance again of a life where you can do everything you want.

    I had my double lung tx in August of 2006. Because of a huge shortage of donors doctors had to give me lungs where they didn’t know if they would be really good. It turns out that in my new lungs i have emphysema and a few months back the doctors where talking about a second tx for me too. They said that if they could they thought they had to do it, only to give me a real chance.
    Luckily with new nebs my fev1 has gone from 42% to 62% or something like that. So as long as i do my nebs and they help i feel ok.

    Could you do the feeding through your tube in very small portions? Like 100 ml every hour or so… Do you have feedings with extra vibers too? Maybe that would help..

    Thinking of you! Big hug!

    Profile photo of MarjoleinMarjolein
    Member
    #171204967739

    Hi Elizabeth

    i’m sorry to hear you are having to go for a second transplant. I really hope you don’t have to wait too long and that you will have the chance again of a life where you can do everything you want.

    I had my double lung tx in August of 2006. Because of a huge shortage of donors doctors had to give me lungs where they didn’t know if they would be really good. It turns out that in my new lungs i have emphysema and a few months back the doctors where talking about a second tx for me too. They said that if they could they thought they had to do it, only to give me a real chance.
    Luckily with new nebs my fev1 has gone from 42% to 62% or something like that. So as long as i do my nebs and they help i feel ok.

    Could you do the feeding through your tube in very small portions? Like 100 ml every hour or so… Do you have feedings with extra vibers too? Maybe that would help..

    Thinking of you! Big hug!

    Profile photo of MarjoleinMarjolein
    Member
    #171205064544

    Hi Elizabeth

    i’m sorry to hear you are having to go for a second transplant. I really hope you don’t have to wait too long and that you will have the chance again of a life where you can do everything you want.

    I had my double lung tx in August of 2006. Because of a huge shortage of donors doctors had to give me lungs where they didn’t know if they would be really good. It turns out that in my new lungs i have emphysema and a few months back the doctors where talking about a second tx for me too. They said that if they could they thought they had to do it, only to give me a real chance.
    Luckily with new nebs my fev1 has gone from 42% to 62% or something like that. So as long as i do my nebs and they help i feel ok.

    Could you do the feeding through your tube in very small portions? Like 100 ml every hour or so… Do you have feedings with extra vibers too? Maybe that would help..

    Thinking of you! Big hug!

    Profile photo of MarjoleinMarjolein
    Member
    #171205200670

    Hi Elizabeth

    i’m sorry to hear you are having to go for a second transplant. I really hope you don’t have to wait too long and that you will have the chance again of a life where you can do everything you want.

    I had my double lung tx in August of 2006. Because of a huge shortage of donors doctors had to give me lungs where they didn’t know if they would be really good. It turns out that in my new lungs i have emphysema and a few months back the doctors where talking about a second tx for me too. They said that if they could they thought they had to do it, only to give me a real chance.
    Luckily with new nebs my fev1 has gone from 42% to 62% or something like that. So as long as i do my nebs and they help i feel ok.

    Could you do the feeding through your tube in very small portions? Like 100 ml every hour or so… Do you have feedings with extra vibers too? Maybe that would help..

    Thinking of you! Big hug!

    Profile photo of MarjoleinMarjolein
    Member
    #171205331972

    Hi Elizabeth

    i’m sorry to hear you are having to go for a second transplant. I really hope you don’t have to wait too long and that you will have the chance again of a life where you can do everything you want.

    I had my double lung tx in August of 2006. Because of a huge shortage of donors doctors had to give me lungs where they didn’t know if they would be really good. It turns out that in my new lungs i have emphysema and a few months back the doctors where talking about a second tx for me too. They said that if they could they thought they had to do it, only to give me a real chance.
    Luckily with new nebs my fev1 has gone from 42% to 62% or something like that. So as long as i do my nebs and they help i feel ok.

    Could you do the feeding through your tube in very small portions? Like 100 ml every hour or so… Do you have feedings with extra vibers too? Maybe that would help..

    Thinking of you! Big hug!

    Profile photo of ehealy12ehealy12
    Member
    #1776831

    Hi, Im 18 years old and i had a double lung transplant when i was 11, i am now in chronic rejection. I am about 3 wks from becoming active on the list for the second transplant but I am really nervous this time around. Recently I’ve noticed my breathing took a huge dip down and i can hardly walk to the bathroom without being breathless. I am on 2 1/2 liters on O2 but my biggest problem is i have to gain about 10 lbs and its soo hard i have a GJ tube but i’ve had alot of stomach probelms so its hard for me to even do 1 can withoute feeling bloated. If anyone has any tips tat would be soo appreciated.. thanks for reading i needed somewhere to vent.

    ~Elizabeth~

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