Initial Transplant evaluation

coltsfan715 · Feb 2, 2008

I also wanted to add about the weight issue. Some centers will make you gain the weight to get listed actively - others will not it just depends. I struggled with my weight as well. I was around 105 and 5'7" when I was evaluated and I talked to the docs about it. They told me they would prefer it if I could gain weight because it would help me out, but that because my weight had been stable for the past few years they were okay with that.

They listed me at 105 - I worked to gain the weight while listed and was able to do so, mainly because I constantly snacked and did relatively little, but hey however I did it I was able to put on about 10 lbs pre transplant (in about a month). I went in the day I was called and had my surgery weighing 115. I went home 2 weeks later weighing 105 again. I now weigh about 125, and the docs are more than happy with that.

Also to add - most centers will have some sort of physical therapy or cardio pulmonary rehab that they want you to take part in - in preparation for transplant. You will also have pulmonary rehab after transplant as well.

Take Care,
Linds

coltsfan715 · Feb 2, 2008

I also wanted to add about the weight issue. Some centers will make you gain the weight to get listed actively - others will not it just depends. I struggled with my weight as well. I was around 105 and 5'7" when I was evaluated and I talked to the docs about it. They told me they would prefer it if I could gain weight because it would help me out, but that because my weight had been stable for the past few years they were okay with that.

They listed me at 105 - I worked to gain the weight while listed and was able to do so, mainly because I constantly snacked and did relatively little, but hey however I did it I was able to put on about 10 lbs pre transplant (in about a month). I went in the day I was called and had my surgery weighing 115. I went home 2 weeks later weighing 105 again. I now weigh about 125, and the docs are more than happy with that.

Also to add - most centers will have some sort of physical therapy or cardio pulmonary rehab that they want you to take part in - in preparation for transplant. You will also have pulmonary rehab after transplant as well.

Take Care,
Linds

coltsfan715 · Feb 2, 2008

I also wanted to add about the weight issue. Some centers will make you gain the weight to get listed actively - others will not it just depends. I struggled with my weight as well. I was around 105 and 5'7" when I was evaluated and I talked to the docs about it. They told me they would prefer it if I could gain weight because it would help me out, but that because my weight had been stable for the past few years they were okay with that.

They listed me at 105 - I worked to gain the weight while listed and was able to do so, mainly because I constantly snacked and did relatively little, but hey however I did it I was able to put on about 10 lbs pre transplant (in about a month). I went in the day I was called and had my surgery weighing 115. I went home 2 weeks later weighing 105 again. I now weigh about 125, and the docs are more than happy with that.

Also to add - most centers will have some sort of physical therapy or cardio pulmonary rehab that they want you to take part in - in preparation for transplant. You will also have pulmonary rehab after transplant as well.

Take Care,
Linds

coltsfan715 · Feb 2, 2008

I also wanted to add about the weight issue. Some centers will make you gain the weight to get listed actively - others will not it just depends. I struggled with my weight as well. I was around 105 and 5'7" when I was evaluated and I talked to the docs about it. They told me they would prefer it if I could gain weight because it would help me out, but that because my weight had been stable for the past few years they were okay with that.

They listed me at 105 - I worked to gain the weight while listed and was able to do so, mainly because I constantly snacked and did relatively little, but hey however I did it I was able to put on about 10 lbs pre transplant (in about a month). I went in the day I was called and had my surgery weighing 115. I went home 2 weeks later weighing 105 again. I now weigh about 125, and the docs are more than happy with that.

Also to add - most centers will have some sort of physical therapy or cardio pulmonary rehab that they want you to take part in - in preparation for transplant. You will also have pulmonary rehab after transplant as well.

Take Care,
Linds

coltsfan715 · Feb 2, 2008

I also wanted to add about the weight issue. Some centers will make you gain the weight to get listed actively - others will not it just depends. I struggled with my weight as well. I was around 105 and 5'7" when I was evaluated and I talked to the docs about it. They told me they would prefer it if I could gain weight because it would help me out, but that because my weight had been stable for the past few years they were okay with that.

They listed me at 105 - I worked to gain the weight while listed and was able to do so, mainly because I constantly snacked and did relatively little, but hey however I did it I was able to put on about 10 lbs pre transplant (in about a month). I went in the day I was called and had my surgery weighing 115. I went home 2 weeks later weighing 105 again. I now weigh about 125, and the docs are more than happy with that.

Also to add - most centers will have some sort of physical therapy or cardio pulmonary rehab that they want you to take part in - in preparation for transplant. You will also have pulmonary rehab after transplant as well.

Take Care,
Linds

jfarel · Feb 2, 2008

I had more than half of my evaluation done while in the hospital in early Jan. The rest I will finish on Feb. 7th. For me, it was a tone of blood work. Fortunately I had picc line that was working really well so that aspect wasn't bad at all. I also did a 24 hr. urnine collection, a ekg, sonogram of stomach/organs, ct scan, and xray. I have a perfusion scan left, an evaluation by a psychologist, and pfts. I might have to do a walk test and ABG, not sure about that those though.

My weight is on the really low side too and they told me I need to gain weight. I had a gtube put in back in december so that has helped a little. I am 5 foot 9 or 10 and 126 lbs with my clothes on. I really want to get to 135 or 140 but its been really difficult.

jfarel · Feb 2, 2008

I had more than half of my evaluation done while in the hospital in early Jan. The rest I will finish on Feb. 7th. For me, it was a tone of blood work. Fortunately I had picc line that was working really well so that aspect wasn't bad at all. I also did a 24 hr. urnine collection, a ekg, sonogram of stomach/organs, ct scan, and xray. I have a perfusion scan left, an evaluation by a psychologist, and pfts. I might have to do a walk test and ABG, not sure about that those though.

My weight is on the really low side too and they told me I need to gain weight. I had a gtube put in back in december so that has helped a little. I am 5 foot 9 or 10 and 126 lbs with my clothes on. I really want to get to 135 or 140 but its been really difficult.

jfarel · Feb 2, 2008

I had more than half of my evaluation done while in the hospital in early Jan. The rest I will finish on Feb. 7th. For me, it was a tone of blood work. Fortunately I had picc line that was working really well so that aspect wasn't bad at all. I also did a 24 hr. urnine collection, a ekg, sonogram of stomach/organs, ct scan, and xray. I have a perfusion scan left, an evaluation by a psychologist, and pfts. I might have to do a walk test and ABG, not sure about that those though.

My weight is on the really low side too and they told me I need to gain weight. I had a gtube put in back in december so that has helped a little. I am 5 foot 9 or 10 and 126 lbs with my clothes on. I really want to get to 135 or 140 but its been really difficult.

jfarel · Feb 2, 2008

I had more than half of my evaluation done while in the hospital in early Jan. The rest I will finish on Feb. 7th. For me, it was a tone of blood work. Fortunately I had picc line that was working really well so that aspect wasn't bad at all. I also did a 24 hr. urnine collection, a ekg, sonogram of stomach/organs, ct scan, and xray. I have a perfusion scan left, an evaluation by a psychologist, and pfts. I might have to do a walk test and ABG, not sure about that those though.

My weight is on the really low side too and they told me I need to gain weight. I had a gtube put in back in december so that has helped a little. I am 5 foot 9 or 10 and 126 lbs with my clothes on. I really want to get to 135 or 140 but its been really difficult.

jfarel · Feb 2, 2008

I had more than half of my evaluation done while in the hospital in early Jan. The rest I will finish on Feb. 7th. For me, it was a tone of blood work. Fortunately I had picc line that was working really well so that aspect wasn't bad at all. I also did a 24 hr. urnine collection, a ekg, sonogram of stomach/organs, ct scan, and xray. I have a perfusion scan left, an evaluation by a psychologist, and pfts. I might have to do a walk test and ABG, not sure about that those though.

My weight is on the really low side too and they told me I need to gain weight. I had a gtube put in back in december so that has helped a little. I am 5 foot 9 or 10 and 126 lbs with my clothes on. I really want to get to 135 or 140 but its been really difficult.

Breezy · Feb 2, 2008

I had my evaluation back in December. It was pretty much like Lindsey and everyone else said: 24 hour urine collection, fasting bloods, lots of blood taken, x-rays, CT scans, bone density scans, meeting with transplant co-ordinators, anasthesiologist, EKG, echo, exercise study, 6 minute walk, PFTs and blood gases...you name it, they'll give it to you. Just bear in mind though that they do this b/c they need to know you inside and out.

From June till now i've put on about 13 lbs. The docs are thrilled about it and I am keeping it on. Though it can be daunting if you're not used to having that kind of weight on you, you do get listed. I heard back a week ago about my results and everything is completely 'acceptable' but it may be a little early for me. As a result, I am to come back in 2-3 months (which is March/April from the time they called at the end of Jan) so see if I am ready then.

In the meantime, they want me to begin physiotherapy. Like Lindsey said, some centers require you to do physio pre and post tx - my center is one of them. I am going to do it locally at first, but when i get listed i will have to go to my center 3 times a week. Sometimes even, doing physio PRIOR TO GETTING LISTED is a pre-req.

I hope that was of some help. Don't forget that all centers are different and you may not have physio or anything like that.

Good luck!

Breezy · Feb 2, 2008

I had my evaluation back in December. It was pretty much like Lindsey and everyone else said: 24 hour urine collection, fasting bloods, lots of blood taken, x-rays, CT scans, bone density scans, meeting with transplant co-ordinators, anasthesiologist, EKG, echo, exercise study, 6 minute walk, PFTs and blood gases...you name it, they'll give it to you. Just bear in mind though that they do this b/c they need to know you inside and out.

From June till now i've put on about 13 lbs. The docs are thrilled about it and I am keeping it on. Though it can be daunting if you're not used to having that kind of weight on you, you do get listed. I heard back a week ago about my results and everything is completely 'acceptable' but it may be a little early for me. As a result, I am to come back in 2-3 months (which is March/April from the time they called at the end of Jan) so see if I am ready then.

In the meantime, they want me to begin physiotherapy. Like Lindsey said, some centers require you to do physio pre and post tx - my center is one of them. I am going to do it locally at first, but when i get listed i will have to go to my center 3 times a week. Sometimes even, doing physio PRIOR TO GETTING LISTED is a pre-req.

I hope that was of some help. Don't forget that all centers are different and you may not have physio or anything like that.

Good luck!

Breezy · Feb 2, 2008

I had my evaluation back in December. It was pretty much like Lindsey and everyone else said: 24 hour urine collection, fasting bloods, lots of blood taken, x-rays, CT scans, bone density scans, meeting with transplant co-ordinators, anasthesiologist, EKG, echo, exercise study, 6 minute walk, PFTs and blood gases...you name it, they'll give it to you. Just bear in mind though that they do this b/c they need to know you inside and out.

From June till now i've put on about 13 lbs. The docs are thrilled about it and I am keeping it on. Though it can be daunting if you're not used to having that kind of weight on you, you do get listed. I heard back a week ago about my results and everything is completely 'acceptable' but it may be a little early for me. As a result, I am to come back in 2-3 months (which is March/April from the time they called at the end of Jan) so see if I am ready then.

In the meantime, they want me to begin physiotherapy. Like Lindsey said, some centers require you to do physio pre and post tx - my center is one of them. I am going to do it locally at first, but when i get listed i will have to go to my center 3 times a week. Sometimes even, doing physio PRIOR TO GETTING LISTED is a pre-req.

I hope that was of some help. Don't forget that all centers are different and you may not have physio or anything like that.

Good luck!

Breezy · Feb 2, 2008

I had my evaluation back in December. It was pretty much like Lindsey and everyone else said: 24 hour urine collection, fasting bloods, lots of blood taken, x-rays, CT scans, bone density scans, meeting with transplant co-ordinators, anasthesiologist, EKG, echo, exercise study, 6 minute walk, PFTs and blood gases...you name it, they'll give it to you. Just bear in mind though that they do this b/c they need to know you inside and out.

From June till now i've put on about 13 lbs. The docs are thrilled about it and I am keeping it on. Though it can be daunting if you're not used to having that kind of weight on you, you do get listed. I heard back a week ago about my results and everything is completely 'acceptable' but it may be a little early for me. As a result, I am to come back in 2-3 months (which is March/April from the time they called at the end of Jan) so see if I am ready then.

In the meantime, they want me to begin physiotherapy. Like Lindsey said, some centers require you to do physio pre and post tx - my center is one of them. I am going to do it locally at first, but when i get listed i will have to go to my center 3 times a week. Sometimes even, doing physio PRIOR TO GETTING LISTED is a pre-req.

I hope that was of some help. Don't forget that all centers are different and you may not have physio or anything like that.

Good luck!

Breezy · Feb 2, 2008

I had my evaluation back in December. It was pretty much like Lindsey and everyone else said: 24 hour urine collection, fasting bloods, lots of blood taken, x-rays, CT scans, bone density scans, meeting with transplant co-ordinators, anasthesiologist, EKG, echo, exercise study, 6 minute walk, PFTs and blood gases...you name it, they'll give it to you. Just bear in mind though that they do this b/c they need to know you inside and out.

From June till now i've put on about 13 lbs. The docs are thrilled about it and I am keeping it on. Though it can be daunting if you're not used to having that kind of weight on you, you do get listed. I heard back a week ago about my results and everything is completely 'acceptable' but it may be a little early for me. As a result, I am to come back in 2-3 months (which is March/April from the time they called at the end of Jan) so see if I am ready then.

In the meantime, they want me to begin physiotherapy. Like Lindsey said, some centers require you to do physio pre and post tx - my center is one of them. I am going to do it locally at first, but when i get listed i will have to go to my center 3 times a week. Sometimes even, doing physio PRIOR TO GETTING LISTED is a pre-req.

I hope that was of some help. Don't forget that all centers are different and you may not have physio or anything like that.

Good luck!

shamrock · Feb 2, 2008

Hey there,

Just wanted to wish you good luck. Everyone above me has pretty much said everything you need to know <img src="i/expressions/face-icon-small-wink.gif" border="0">

Just re: the weight, do you do feeds of any sort? I needed to be 45kg (99lbs) to get on the active list. This took me about 3 months. About 6months before I got listed, they actually requested that I be that weight , but I didn't achieve it. They were pretty annoyed, but I didn't realise they wanted me on the active list (hindsight is a wonderful thing!). I'm guessing they were expecting me to walk in @ 99lbs and they'd sit down and tell me I was ready. Whoops.

Anyway it took night feeds and two bolus feeds a day (I had zero appetite) to get the weight but I felt much better for having it on me.

Also don't forget, if you're told you're not a good candidate for whatever reason, they'll tell you why (weight maybe?) and you can work on this and try again. There are usually three out comes to an assesment: "Yes", "No" or "yes, but too early".

You've definately got the right attitude and you're right about getting all this sorted early on so you're not making rush desicions. I know for me I didn't want to be at 'transplant stage' and for that reason was rather reluctant...so basically it's totally normal to be nervous, and if you can I think you're right to 'postpone' needing one as long as you can, but good luck <img src="i/expressions/face-icon-small-tongue.gif" border="0">

shamrock · Feb 2, 2008

Hey there,

Just wanted to wish you good luck. Everyone above me has pretty much said everything you need to know <img src="i/expressions/face-icon-small-wink.gif" border="0">

Just re: the weight, do you do feeds of any sort? I needed to be 45kg (99lbs) to get on the active list. This took me about 3 months. About 6months before I got listed, they actually requested that I be that weight , but I didn't achieve it. They were pretty annoyed, but I didn't realise they wanted me on the active list (hindsight is a wonderful thing!). I'm guessing they were expecting me to walk in @ 99lbs and they'd sit down and tell me I was ready. Whoops.

Anyway it took night feeds and two bolus feeds a day (I had zero appetite) to get the weight but I felt much better for having it on me.

Also don't forget, if you're told you're not a good candidate for whatever reason, they'll tell you why (weight maybe?) and you can work on this and try again. There are usually three out comes to an assesment: "Yes", "No" or "yes, but too early".

You've definately got the right attitude and you're right about getting all this sorted early on so you're not making rush desicions. I know for me I didn't want to be at 'transplant stage' and for that reason was rather reluctant...so basically it's totally normal to be nervous, and if you can I think you're right to 'postpone' needing one as long as you can, but good luck <img src="i/expressions/face-icon-small-tongue.gif" border="0">

shamrock · Feb 2, 2008

Hey there,

Just wanted to wish you good luck. Everyone above me has pretty much said everything you need to know <img src="i/expressions/face-icon-small-wink.gif" border="0">

Just re: the weight, do you do feeds of any sort? I needed to be 45kg (99lbs) to get on the active list. This took me about 3 months. About 6months before I got listed, they actually requested that I be that weight , but I didn't achieve it. They were pretty annoyed, but I didn't realise they wanted me on the active list (hindsight is a wonderful thing!). I'm guessing they were expecting me to walk in @ 99lbs and they'd sit down and tell me I was ready. Whoops.

Anyway it took night feeds and two bolus feeds a day (I had zero appetite) to get the weight but I felt much better for having it on me.

Also don't forget, if you're told you're not a good candidate for whatever reason, they'll tell you why (weight maybe?) and you can work on this and try again. There are usually three out comes to an assesment: "Yes", "No" or "yes, but too early".

You've definately got the right attitude and you're right about getting all this sorted early on so you're not making rush desicions. I know for me I didn't want to be at 'transplant stage' and for that reason was rather reluctant...so basically it's totally normal to be nervous, and if you can I think you're right to 'postpone' needing one as long as you can, but good luck <img src="i/expressions/face-icon-small-tongue.gif" border="0">

shamrock · Feb 2, 2008

Hey there,

Just wanted to wish you good luck. Everyone above me has pretty much said everything you need to know <img src="i/expressions/face-icon-small-wink.gif" border="0">

Just re: the weight, do you do feeds of any sort? I needed to be 45kg (99lbs) to get on the active list. This took me about 3 months. About 6months before I got listed, they actually requested that I be that weight , but I didn't achieve it. They were pretty annoyed, but I didn't realise they wanted me on the active list (hindsight is a wonderful thing!). I'm guessing they were expecting me to walk in @ 99lbs and they'd sit down and tell me I was ready. Whoops.

Anyway it took night feeds and two bolus feeds a day (I had zero appetite) to get the weight but I felt much better for having it on me.

Also don't forget, if you're told you're not a good candidate for whatever reason, they'll tell you why (weight maybe?) and you can work on this and try again. There are usually three out comes to an assesment: "Yes", "No" or "yes, but too early".

You've definately got the right attitude and you're right about getting all this sorted early on so you're not making rush desicions. I know for me I didn't want to be at 'transplant stage' and for that reason was rather reluctant...so basically it's totally normal to be nervous, and if you can I think you're right to 'postpone' needing one as long as you can, but good luck <img src="i/expressions/face-icon-small-tongue.gif" border="0">

shamrock · Feb 2, 2008

Hey there,

Just wanted to wish you good luck. Everyone above me has pretty much said everything you need to know <img src="i/expressions/face-icon-small-wink.gif" border="0">

Just re: the weight, do you do feeds of any sort? I needed to be 45kg (99lbs) to get on the active list. This took me about 3 months. About 6months before I got listed, they actually requested that I be that weight , but I didn't achieve it. They were pretty annoyed, but I didn't realise they wanted me on the active list (hindsight is a wonderful thing!). I'm guessing they were expecting me to walk in @ 99lbs and they'd sit down and tell me I was ready. Whoops.

Anyway it took night feeds and two bolus feeds a day (I had zero appetite) to get the weight but I felt much better for having it on me.

Also don't forget, if you're told you're not a good candidate for whatever reason, they'll tell you why (weight maybe?) and you can work on this and try again. There are usually three out comes to an assesment: "Yes", "No" or "yes, but too early".

You've definately got the right attitude and you're right about getting all this sorted early on so you're not making rush desicions. I know for me I didn't want to be at 'transplant stage' and for that reason was rather reluctant...so basically it's totally normal to be nervous, and if you can I think you're right to 'postpone' needing one as long as you can, but good luck <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Initial Transplant evaluation

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