Weight for transplant~

JazzysMom · Sep 20, 2009

I know that weight is a factor with CF itself, but am wondering

If you weight is not at an acceptable leve. Do they assume or let you try to get it up on your own or would they recommend a g-tube?

If so would the g-tube need to be removed before transplant?

Same goes for the ports......I know this have been discussed before (unless that was in my mind LOL)

JazzysMom · Sep 20, 2009

I know that weight is a factor with CF itself, but am wondering

If you weight is not at an acceptable leve. Do they assume or let you try to get it up on your own or would they recommend a g-tube?

If so would the g-tube need to be removed before transplant?

Same goes for the ports......I know this have been discussed before (unless that was in my mind LOL)

JazzysMom · Sep 20, 2009

I know that weight is a factor with CF itself, but am wondering

If you weight is not at an acceptable leve. Do they assume or let you try to get it up on your own or would they recommend a g-tube?

If so would the g-tube need to be removed before transplant?

Same goes for the ports......I know this have been discussed before (unless that was in my mind LOL)

JazzysMom · Sep 20, 2009

I know that weight is a factor with CF itself, but am wondering

If you weight is not at an acceptable leve. Do they assume or let you try to get it up on your own or would they recommend a g-tube?

If so would the g-tube need to be removed before transplant?

Same goes for the ports......I know this have been discussed before (unless that was in my mind LOL)

JazzysMom · Sep 20, 2009

I know that weight is a factor with CF itself, but am wondering
 
 If you weight is not at an acceptable leve. Do they assume or let you try to get it up on your own or would they recommend a g-tube?
 
 If so would the g-tube need to be removed before transplant?
 
 Same goes for the ports......I know this have been discussed before (unless that was in my mind LOL)

Transplantmommy · Sep 20, 2009

I was at a very low weight for my height when I was listed for the transplant and they let me try to keep my weight on me but they did threaten a g-tube. I was at 113 pounds and am 5'9". If a person has a g-tube when they go in for transplant, it will stay in. It is sometimes useful for the docs to use it for a person's nutrition after transplant. I was not able to eat anything for about three days, then I started with jello, and once I had the swallow test done, I was able to move to soft foods. It was really hard for me to swallow after the transplant, I don't know why. It may have had something to do with not being able to talk. Overall, it just felt weird. They did tell me that if I didn't start eating that they were going to put a feeding tube down my nose/throat.

I still had my port when I went in for my transplant. They like it to be removed as soon as possible after transplant (at least at the Cleveland Clinic) because it's an infection risk to keep it. Mine was removed 2-3 months post transplant and they just did peripheral IV's when I had my bronchs.

Transplantmommy · Sep 20, 2009

I was at a very low weight for my height when I was listed for the transplant and they let me try to keep my weight on me but they did threaten a g-tube. I was at 113 pounds and am 5'9". If a person has a g-tube when they go in for transplant, it will stay in. It is sometimes useful for the docs to use it for a person's nutrition after transplant. I was not able to eat anything for about three days, then I started with jello, and once I had the swallow test done, I was able to move to soft foods. It was really hard for me to swallow after the transplant, I don't know why. It may have had something to do with not being able to talk. Overall, it just felt weird. They did tell me that if I didn't start eating that they were going to put a feeding tube down my nose/throat.

I still had my port when I went in for my transplant. They like it to be removed as soon as possible after transplant (at least at the Cleveland Clinic) because it's an infection risk to keep it. Mine was removed 2-3 months post transplant and they just did peripheral IV's when I had my bronchs.

Transplantmommy · Sep 20, 2009

I was at a very low weight for my height when I was listed for the transplant and they let me try to keep my weight on me but they did threaten a g-tube. I was at 113 pounds and am 5'9". If a person has a g-tube when they go in for transplant, it will stay in. It is sometimes useful for the docs to use it for a person's nutrition after transplant. I was not able to eat anything for about three days, then I started with jello, and once I had the swallow test done, I was able to move to soft foods. It was really hard for me to swallow after the transplant, I don't know why. It may have had something to do with not being able to talk. Overall, it just felt weird. They did tell me that if I didn't start eating that they were going to put a feeding tube down my nose/throat.

I still had my port when I went in for my transplant. They like it to be removed as soon as possible after transplant (at least at the Cleveland Clinic) because it's an infection risk to keep it. Mine was removed 2-3 months post transplant and they just did peripheral IV's when I had my bronchs.

Transplantmommy · Sep 20, 2009

I was at a very low weight for my height when I was listed for the transplant and they let me try to keep my weight on me but they did threaten a g-tube. I was at 113 pounds and am 5'9". If a person has a g-tube when they go in for transplant, it will stay in. It is sometimes useful for the docs to use it for a person's nutrition after transplant. I was not able to eat anything for about three days, then I started with jello, and once I had the swallow test done, I was able to move to soft foods. It was really hard for me to swallow after the transplant, I don't know why. It may have had something to do with not being able to talk. Overall, it just felt weird. They did tell me that if I didn't start eating that they were going to put a feeding tube down my nose/throat.

I still had my port when I went in for my transplant. They like it to be removed as soon as possible after transplant (at least at the Cleveland Clinic) because it's an infection risk to keep it. Mine was removed 2-3 months post transplant and they just did peripheral IV's when I had my bronchs.

Transplantmommy · Sep 20, 2009

I was at a very low weight for my height when I was listed for the transplant and they let me try to keep my weight on me but they did threaten a g-tube. I was at 113 pounds and am 5'9". If a person has a g-tube when they go in for transplant, it will stay in. It is sometimes useful for the docs to use it for a person's nutrition after transplant. I was not able to eat anything for about three days, then I started with jello, and once I had the swallow test done, I was able to move to soft foods. It was really hard for me to swallow after the transplant, I don't know why. It may have had something to do with not being able to talk. Overall, it just felt weird. They did tell me that if I didn't start eating that they were going to put a feeding tube down my nose/throat.
 
 I still had my port when I went in for my transplant. They like it to be removed as soon as possible after transplant (at least at the Cleveland Clinic) because it's an infection risk to keep it. Mine was removed 2-3 months post transplant and they just did peripheral IV's when I had my bronchs.

NYCLawGirl · Sep 20, 2009

hey mel,

at my center (which would likely be your center, i'm guessing) they recommend your weight be at least 18.5 BMI. however, they don't push the g-tube necessarily -- instead, they have you meet with their nutritionist who tries to work out a plan with you. basically in my experience, all decisions like g-tube, ports, when to do IVs, etc, remain between you and your CF team pre-tx. the tx center is very minimally involved in dictating your care before the surgery, though you are followed by a tx pulmo and they sometimes do things like prescribe pulmonary rehab or other programs to get you healthier. i'd imagine if you were severely underweight they would require you to do something about it before they would consider listing you, but i'm very skinny and below the recommended threshold, but it's still left up to my CF doc and me how to deal with that. my tx doc has yet to prescribe any drug or treatment other than the testing necessary for listing.

as for ports and g-tubes, i have no idea on the latter, but i know my center removes ports during tx surgery or right after if possible. as patti said, it's b/c of infection risk. i just lost my port due to infection, but basically i've been told it would be pointless to get another when i'm waiting for tx anyway.

hope that helps. if you have any questions specific to the NYC center, please just let me know!

NYCLawGirl · Sep 20, 2009

hey mel,

at my center (which would likely be your center, i'm guessing) they recommend your weight be at least 18.5 BMI. however, they don't push the g-tube necessarily -- instead, they have you meet with their nutritionist who tries to work out a plan with you. basically in my experience, all decisions like g-tube, ports, when to do IVs, etc, remain between you and your CF team pre-tx. the tx center is very minimally involved in dictating your care before the surgery, though you are followed by a tx pulmo and they sometimes do things like prescribe pulmonary rehab or other programs to get you healthier. i'd imagine if you were severely underweight they would require you to do something about it before they would consider listing you, but i'm very skinny and below the recommended threshold, but it's still left up to my CF doc and me how to deal with that. my tx doc has yet to prescribe any drug or treatment other than the testing necessary for listing.

as for ports and g-tubes, i have no idea on the latter, but i know my center removes ports during tx surgery or right after if possible. as patti said, it's b/c of infection risk. i just lost my port due to infection, but basically i've been told it would be pointless to get another when i'm waiting for tx anyway.

hope that helps. if you have any questions specific to the NYC center, please just let me know!

NYCLawGirl · Sep 20, 2009

hey mel,

at my center (which would likely be your center, i'm guessing) they recommend your weight be at least 18.5 BMI. however, they don't push the g-tube necessarily -- instead, they have you meet with their nutritionist who tries to work out a plan with you. basically in my experience, all decisions like g-tube, ports, when to do IVs, etc, remain between you and your CF team pre-tx. the tx center is very minimally involved in dictating your care before the surgery, though you are followed by a tx pulmo and they sometimes do things like prescribe pulmonary rehab or other programs to get you healthier. i'd imagine if you were severely underweight they would require you to do something about it before they would consider listing you, but i'm very skinny and below the recommended threshold, but it's still left up to my CF doc and me how to deal with that. my tx doc has yet to prescribe any drug or treatment other than the testing necessary for listing.

as for ports and g-tubes, i have no idea on the latter, but i know my center removes ports during tx surgery or right after if possible. as patti said, it's b/c of infection risk. i just lost my port due to infection, but basically i've been told it would be pointless to get another when i'm waiting for tx anyway.

hope that helps. if you have any questions specific to the NYC center, please just let me know!

NYCLawGirl · Sep 20, 2009

hey mel,

at my center (which would likely be your center, i'm guessing) they recommend your weight be at least 18.5 BMI. however, they don't push the g-tube necessarily -- instead, they have you meet with their nutritionist who tries to work out a plan with you. basically in my experience, all decisions like g-tube, ports, when to do IVs, etc, remain between you and your CF team pre-tx. the tx center is very minimally involved in dictating your care before the surgery, though you are followed by a tx pulmo and they sometimes do things like prescribe pulmonary rehab or other programs to get you healthier. i'd imagine if you were severely underweight they would require you to do something about it before they would consider listing you, but i'm very skinny and below the recommended threshold, but it's still left up to my CF doc and me how to deal with that. my tx doc has yet to prescribe any drug or treatment other than the testing necessary for listing.

as for ports and g-tubes, i have no idea on the latter, but i know my center removes ports during tx surgery or right after if possible. as patti said, it's b/c of infection risk. i just lost my port due to infection, but basically i've been told it would be pointless to get another when i'm waiting for tx anyway.

hope that helps. if you have any questions specific to the NYC center, please just let me know!

NYCLawGirl · Sep 20, 2009

hey mel,
 
 at my center (which would likely be your center, i'm guessing) they recommend your weight be at least 18.5 BMI. however, they don't push the g-tube necessarily -- instead, they have you meet with their nutritionist who tries to work out a plan with you. basically in my experience, all decisions like g-tube, ports, when to do IVs, etc, remain between you and your CF team pre-tx. the tx center is very minimally involved in dictating your care before the surgery, though you are followed by a tx pulmo and they sometimes do things like prescribe pulmonary rehab or other programs to get you healthier. i'd imagine if you were severely underweight they would require you to do something about it before they would consider listing you, but i'm very skinny and below the recommended threshold, but it's still left up to my CF doc and me how to deal with that. my tx doc has yet to prescribe any drug or treatment other than the testing necessary for listing.
 
 as for ports and g-tubes, i have no idea on the latter, but i know my center removes ports during tx surgery or right after if possible. as patti said, it's b/c of infection risk. i just lost my port due to infection, but basically i've been told it would be pointless to get another when i'm waiting for tx anyway.
 
 hope that helps. if you have any questions specific to the NYC center, please just let me know!

JazzysMom · Sep 20, 2009

Thanks Ladies!

Piper we are pushing for Columbia as that who St. Vincents works with!

I keep you in mind since you are just far enough ahead of me in the process <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-sad.gif" border="0">

JazzysMom · Sep 20, 2009

Thanks Ladies!

Piper we are pushing for Columbia as that who St. Vincents works with!

I keep you in mind since you are just far enough ahead of me in the process <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-sad.gif" border="0">

JazzysMom · Sep 20, 2009

Thanks Ladies!

Piper we are pushing for Columbia as that who St. Vincents works with!

I keep you in mind since you are just far enough ahead of me in the process <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-sad.gif" border="0">

JazzysMom · Sep 20, 2009

Thanks Ladies!

Piper we are pushing for Columbia as that who St. Vincents works with!

I keep you in mind since you are just far enough ahead of me in the process <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-sad.gif" border="0">

JazzysMom · Sep 20, 2009

Thanks Ladies!
 
 Piper we are pushing for Columbia as that who St. Vincents works with!
 
 I keep you in mind since you are just far enough ahead of me in the process <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-sad.gif" border="0">

Weight for transplant~

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