Weight for transplant~

M

Marjolein

New member
Hi Mel,

Pretransplant my weight was about 41 kilo's and I'm 154cm, that put my BMI at just 17. I could go active on the list because this was a very stable weight for me. I didn't loose more then a kilo at once and didn't gain either. Even when on night feeds for years and years.
So we thought this was sort of just 'my' weight. Post tx I weigh in around 42 or 43 kilo so I think it really is.

As for my port. I could leave it in. And was very happy with that as my peripheral's blew in the first 3 days post transplant and it took about 1 hour for the team to put all my lines in pre transplant (I was already knocked out by that time). They don't use a port at the time of transplant. However, they did access mine a few days post. So I could get my meds.

They took my port out, because of risks of infection when having to access it for heparin every 6 weeks, when I was 6 months post transplant. Or maybe a year, I'm not sure :)
 
M

Marjolein

New member
Hi Mel,

Pretransplant my weight was about 41 kilo's and I'm 154cm, that put my BMI at just 17. I could go active on the list because this was a very stable weight for me. I didn't loose more then a kilo at once and didn't gain either. Even when on night feeds for years and years.
So we thought this was sort of just 'my' weight. Post tx I weigh in around 42 or 43 kilo so I think it really is.

As for my port. I could leave it in. And was very happy with that as my peripheral's blew in the first 3 days post transplant and it took about 1 hour for the team to put all my lines in pre transplant (I was already knocked out by that time). They don't use a port at the time of transplant. However, they did access mine a few days post. So I could get my meds.

They took my port out, because of risks of infection when having to access it for heparin every 6 weeks, when I was 6 months post transplant. Or maybe a year, I'm not sure :)
 
M

Marjolein

New member
Hi Mel,

Pretransplant my weight was about 41 kilo's and I'm 154cm, that put my BMI at just 17. I could go active on the list because this was a very stable weight for me. I didn't loose more then a kilo at once and didn't gain either. Even when on night feeds for years and years.
So we thought this was sort of just 'my' weight. Post tx I weigh in around 42 or 43 kilo so I think it really is.

As for my port. I could leave it in. And was very happy with that as my peripheral's blew in the first 3 days post transplant and it took about 1 hour for the team to put all my lines in pre transplant (I was already knocked out by that time). They don't use a port at the time of transplant. However, they did access mine a few days post. So I could get my meds.

They took my port out, because of risks of infection when having to access it for heparin every 6 weeks, when I was 6 months post transplant. Or maybe a year, I'm not sure :)
 
M

Marjolein

New member
Hi Mel,

Pretransplant my weight was about 41 kilo's and I'm 154cm, that put my BMI at just 17. I could go active on the list because this was a very stable weight for me. I didn't loose more then a kilo at once and didn't gain either. Even when on night feeds for years and years.
So we thought this was sort of just 'my' weight. Post tx I weigh in around 42 or 43 kilo so I think it really is.

As for my port. I could leave it in. And was very happy with that as my peripheral's blew in the first 3 days post transplant and it took about 1 hour for the team to put all my lines in pre transplant (I was already knocked out by that time). They don't use a port at the time of transplant. However, they did access mine a few days post. So I could get my meds.

They took my port out, because of risks of infection when having to access it for heparin every 6 weeks, when I was 6 months post transplant. Or maybe a year, I'm not sure :)
 
M

Marjolein

New member
Hi Mel,
<br />
<br />Pretransplant my weight was about 41 kilo's and I'm 154cm, that put my BMI at just 17. I could go active on the list because this was a very stable weight for me. I didn't loose more then a kilo at once and didn't gain either. Even when on night feeds for years and years.
<br />So we thought this was sort of just 'my' weight. Post tx I weigh in around 42 or 43 kilo so I think it really is.
<br />
<br />As for my port. I could leave it in. And was very happy with that as my peripheral's blew in the first 3 days post transplant and it took about 1 hour for the team to put all my lines in pre transplant (I was already knocked out by that time). They don't use a port at the time of transplant. However, they did access mine a few days post. So I could get my meds.
<br />
<br />They took my port out, because of risks of infection when having to access it for heparin every 6 weeks, when I was 6 months post transplant. Or maybe a year, I'm not sure :)
 
F

fr3ak

Guest
G-tube - don't do it, it isnt worth it in my opinion, I had mine in pre tx to gain weight for the tx but the problems that followed seen me lose more weight and eventually it was taken out 6 months after it was put in, at my request.

My weight at tx was a mere 35kg @ 160cm and although they wanted it higher they still listed me and my tx went ahead...

Ports - I had my prior to my tx, for around 3 years prior to getting tx, and to this day I still have it, almost 7 years post tx and a total of 10 years since it was put in.... although the drs want it out, I am not convinced as my veins are crap and I have been told there is a chance of breaking off the cord and that would remain in me, which i wasnt happy about...so decided it could stay there lol

If you're veins are holding and you can go without a port I would just hold off.... but it is up to you...
 
F

fr3ak

Guest
G-tube - don't do it, it isnt worth it in my opinion, I had mine in pre tx to gain weight for the tx but the problems that followed seen me lose more weight and eventually it was taken out 6 months after it was put in, at my request.

My weight at tx was a mere 35kg @ 160cm and although they wanted it higher they still listed me and my tx went ahead...

Ports - I had my prior to my tx, for around 3 years prior to getting tx, and to this day I still have it, almost 7 years post tx and a total of 10 years since it was put in.... although the drs want it out, I am not convinced as my veins are crap and I have been told there is a chance of breaking off the cord and that would remain in me, which i wasnt happy about...so decided it could stay there lol

If you're veins are holding and you can go without a port I would just hold off.... but it is up to you...
 
F

fr3ak

Guest
G-tube - don't do it, it isnt worth it in my opinion, I had mine in pre tx to gain weight for the tx but the problems that followed seen me lose more weight and eventually it was taken out 6 months after it was put in, at my request.

My weight at tx was a mere 35kg @ 160cm and although they wanted it higher they still listed me and my tx went ahead...

Ports - I had my prior to my tx, for around 3 years prior to getting tx, and to this day I still have it, almost 7 years post tx and a total of 10 years since it was put in.... although the drs want it out, I am not convinced as my veins are crap and I have been told there is a chance of breaking off the cord and that would remain in me, which i wasnt happy about...so decided it could stay there lol

If you're veins are holding and you can go without a port I would just hold off.... but it is up to you...
 
F

fr3ak

Guest
G-tube - don't do it, it isnt worth it in my opinion, I had mine in pre tx to gain weight for the tx but the problems that followed seen me lose more weight and eventually it was taken out 6 months after it was put in, at my request.

My weight at tx was a mere 35kg @ 160cm and although they wanted it higher they still listed me and my tx went ahead...

Ports - I had my prior to my tx, for around 3 years prior to getting tx, and to this day I still have it, almost 7 years post tx and a total of 10 years since it was put in.... although the drs want it out, I am not convinced as my veins are crap and I have been told there is a chance of breaking off the cord and that would remain in me, which i wasnt happy about...so decided it could stay there lol

If you're veins are holding and you can go without a port I would just hold off.... but it is up to you...
 
F

fr3ak

Guest
G-tube - don't do it, it isnt worth it in my opinion, I had mine in pre tx to gain weight for the tx but the problems that followed seen me lose more weight and eventually it was taken out 6 months after it was put in, at my request.
<br />
<br />My weight at tx was a mere 35kg @ 160cm and although they wanted it higher they still listed me and my tx went ahead...
<br />
<br />Ports - I had my prior to my tx, for around 3 years prior to getting tx, and to this day I still have it, almost 7 years post tx and a total of 10 years since it was put in.... although the drs want it out, I am not convinced as my veins are crap and I have been told there is a chance of breaking off the cord and that would remain in me, which i wasnt happy about...so decided it could stay there lol
<br />
<br />If you're veins are holding and you can go without a port I would just hold off.... but it is up to you...
 
S

summer732

New member
I had a feeding tube for 8 years prior to my transplant. So I had already had it in and was doing tube feeds. I was grossly underweight at the time of my transplant at only 78 pounds and 4'11". My doctor wanted me to gain more weight so my surgery wouldn't be as risky, but that just didn't happen. At that point my feeding tube was simply sustaining where I was with my weight. I did tube feeds right up to my tx day. I lost around 6 pounds during my tx and recovery. About a year after my tx I gained a healthy amount of weight and was around 95. Right now I'm hovering at 102 - 103.
 
S

summer732

New member
I had a feeding tube for 8 years prior to my transplant. So I had already had it in and was doing tube feeds. I was grossly underweight at the time of my transplant at only 78 pounds and 4'11". My doctor wanted me to gain more weight so my surgery wouldn't be as risky, but that just didn't happen. At that point my feeding tube was simply sustaining where I was with my weight. I did tube feeds right up to my tx day. I lost around 6 pounds during my tx and recovery. About a year after my tx I gained a healthy amount of weight and was around 95. Right now I'm hovering at 102 - 103.
 
S

summer732

New member
I had a feeding tube for 8 years prior to my transplant. So I had already had it in and was doing tube feeds. I was grossly underweight at the time of my transplant at only 78 pounds and 4'11". My doctor wanted me to gain more weight so my surgery wouldn't be as risky, but that just didn't happen. At that point my feeding tube was simply sustaining where I was with my weight. I did tube feeds right up to my tx day. I lost around 6 pounds during my tx and recovery. About a year after my tx I gained a healthy amount of weight and was around 95. Right now I'm hovering at 102 - 103.
 
S

summer732

New member
I had a feeding tube for 8 years prior to my transplant. So I had already had it in and was doing tube feeds. I was grossly underweight at the time of my transplant at only 78 pounds and 4'11". My doctor wanted me to gain more weight so my surgery wouldn't be as risky, but that just didn't happen. At that point my feeding tube was simply sustaining where I was with my weight. I did tube feeds right up to my tx day. I lost around 6 pounds during my tx and recovery. About a year after my tx I gained a healthy amount of weight and was around 95. Right now I'm hovering at 102 - 103.
 
S

summer732

New member
I had a feeding tube for 8 years prior to my transplant. So I had already had it in and was doing tube feeds. I was grossly underweight at the time of my transplant at only 78 pounds and 4'11". My doctor wanted me to gain more weight so my surgery wouldn't be as risky, but that just didn't happen. At that point my feeding tube was simply sustaining where I was with my weight. I did tube feeds right up to my tx day. I lost around 6 pounds during my tx and recovery. About a year after my tx I gained a healthy amount of weight and was around 95. Right now I'm hovering at 102 - 103.
 
C

coltsfan715

New member
I think the gtube decision depends on the patient and the center. I was underweight when I had my evaluation done I weighed about 108 and was 5'7". I was stable though so they just encouraged me to try and gain weight. I started having late night snacks at the suggestion of Risa and it actually helped me gain about 10lbs in the 6 weeks that I was listed. I went in for my transplant weighing 117lbs. but I left the hospital 2 weeks later weighing 105lbs. So the extra definitely does help. I had the nose/throat tube removed within a few hours of the transplant (when they pulled the vent they pulled the feeding tube)

As for the port. I had my port placed in January 2007 and had my transplant May 2007. I actually asked about the port to my transplant team before I ever got it placed. I didn't want to get it have it 6 months and then them remove it when I had my transplant. My center was fine with me having it and wanted me to keep it as long as I could because it was more convenient.

I had my port for a total of 2 years. I had it removed January 2009 because it was starting to give me issues and wasn't functioning properly - also to add I NEVER had any infection issues with it post transplant. It was used just for my bronchs and I had it flushed monthly by my home health nurse as well. Mine was however accessed when I woke up from my transplant and it ended up being the primary IV source for the majority of my hospital stay post transplant.

I have found that there is a wide variance in preference of the port issues in regards to transplant centers that question may be one that you want to ask the team that you end up choosing to work with because they may give you a totally different answer than you have gotten from all of us - and we have all given you different answers for the most part.

Best of Luck Mel!

Lindsey
 
C

coltsfan715

New member
I think the gtube decision depends on the patient and the center. I was underweight when I had my evaluation done I weighed about 108 and was 5'7". I was stable though so they just encouraged me to try and gain weight. I started having late night snacks at the suggestion of Risa and it actually helped me gain about 10lbs in the 6 weeks that I was listed. I went in for my transplant weighing 117lbs. but I left the hospital 2 weeks later weighing 105lbs. So the extra definitely does help. I had the nose/throat tube removed within a few hours of the transplant (when they pulled the vent they pulled the feeding tube)

As for the port. I had my port placed in January 2007 and had my transplant May 2007. I actually asked about the port to my transplant team before I ever got it placed. I didn't want to get it have it 6 months and then them remove it when I had my transplant. My center was fine with me having it and wanted me to keep it as long as I could because it was more convenient.

I had my port for a total of 2 years. I had it removed January 2009 because it was starting to give me issues and wasn't functioning properly - also to add I NEVER had any infection issues with it post transplant. It was used just for my bronchs and I had it flushed monthly by my home health nurse as well. Mine was however accessed when I woke up from my transplant and it ended up being the primary IV source for the majority of my hospital stay post transplant.

I have found that there is a wide variance in preference of the port issues in regards to transplant centers that question may be one that you want to ask the team that you end up choosing to work with because they may give you a totally different answer than you have gotten from all of us - and we have all given you different answers for the most part.

Best of Luck Mel!

Lindsey
 
C

coltsfan715

New member
I think the gtube decision depends on the patient and the center. I was underweight when I had my evaluation done I weighed about 108 and was 5'7". I was stable though so they just encouraged me to try and gain weight. I started having late night snacks at the suggestion of Risa and it actually helped me gain about 10lbs in the 6 weeks that I was listed. I went in for my transplant weighing 117lbs. but I left the hospital 2 weeks later weighing 105lbs. So the extra definitely does help. I had the nose/throat tube removed within a few hours of the transplant (when they pulled the vent they pulled the feeding tube)

As for the port. I had my port placed in January 2007 and had my transplant May 2007. I actually asked about the port to my transplant team before I ever got it placed. I didn't want to get it have it 6 months and then them remove it when I had my transplant. My center was fine with me having it and wanted me to keep it as long as I could because it was more convenient.

I had my port for a total of 2 years. I had it removed January 2009 because it was starting to give me issues and wasn't functioning properly - also to add I NEVER had any infection issues with it post transplant. It was used just for my bronchs and I had it flushed monthly by my home health nurse as well. Mine was however accessed when I woke up from my transplant and it ended up being the primary IV source for the majority of my hospital stay post transplant.

I have found that there is a wide variance in preference of the port issues in regards to transplant centers that question may be one that you want to ask the team that you end up choosing to work with because they may give you a totally different answer than you have gotten from all of us - and we have all given you different answers for the most part.

Best of Luck Mel!

Lindsey
 
C

coltsfan715

New member
I think the gtube decision depends on the patient and the center. I was underweight when I had my evaluation done I weighed about 108 and was 5'7". I was stable though so they just encouraged me to try and gain weight. I started having late night snacks at the suggestion of Risa and it actually helped me gain about 10lbs in the 6 weeks that I was listed. I went in for my transplant weighing 117lbs. but I left the hospital 2 weeks later weighing 105lbs. So the extra definitely does help. I had the nose/throat tube removed within a few hours of the transplant (when they pulled the vent they pulled the feeding tube)

As for the port. I had my port placed in January 2007 and had my transplant May 2007. I actually asked about the port to my transplant team before I ever got it placed. I didn't want to get it have it 6 months and then them remove it when I had my transplant. My center was fine with me having it and wanted me to keep it as long as I could because it was more convenient.

I had my port for a total of 2 years. I had it removed January 2009 because it was starting to give me issues and wasn't functioning properly - also to add I NEVER had any infection issues with it post transplant. It was used just for my bronchs and I had it flushed monthly by my home health nurse as well. Mine was however accessed when I woke up from my transplant and it ended up being the primary IV source for the majority of my hospital stay post transplant.

I have found that there is a wide variance in preference of the port issues in regards to transplant centers that question may be one that you want to ask the team that you end up choosing to work with because they may give you a totally different answer than you have gotten from all of us - and we have all given you different answers for the most part.

Best of Luck Mel!

Lindsey
 
C

coltsfan715

New member
I think the gtube decision depends on the patient and the center. I was underweight when I had my evaluation done I weighed about 108 and was 5'7". I was stable though so they just encouraged me to try and gain weight. I started having late night snacks at the suggestion of Risa and it actually helped me gain about 10lbs in the 6 weeks that I was listed. I went in for my transplant weighing 117lbs. but I left the hospital 2 weeks later weighing 105lbs. So the extra definitely does help. I had the nose/throat tube removed within a few hours of the transplant (when they pulled the vent they pulled the feeding tube)
<br />
<br />As for the port. I had my port placed in January 2007 and had my transplant May 2007. I actually asked about the port to my transplant team before I ever got it placed. I didn't want to get it have it 6 months and then them remove it when I had my transplant. My center was fine with me having it and wanted me to keep it as long as I could because it was more convenient.
<br />
<br />I had my port for a total of 2 years. I had it removed January 2009 because it was starting to give me issues and wasn't functioning properly - also to add I NEVER had any infection issues with it post transplant. It was used just for my bronchs and I had it flushed monthly by my home health nurse as well. Mine was however accessed when I woke up from my transplant and it ended up being the primary IV source for the majority of my hospital stay post transplant.
<br />
<br />I have found that there is a wide variance in preference of the port issues in regards to transplant centers that question may be one that you want to ask the team that you end up choosing to work with because they may give you a totally different answer than you have gotten from all of us - and we have all given you different answers for the most part.
<br />
<br />Best of Luck Mel!
<br />
<br />Lindsey
 
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