Hi, I'm Kim, I'm relatively new to this site and haven't written much. I just got listed and am going through all the emotions. I too am scared at the stats, especially since my doctor said my survival stats are l5-10% ower because I have a drug resistant pseudomonias. I was wondering, did anyone else who was transplanted have drug resisted psdo before transplant? How did you do? What have been the risks for you? Also, just out of curiousity, what were your unos scores if you qualified under the new "need based list" I don't really have a good idea of how long it takes to get transplanted. Thanks so much. I have a feeling I will be on this site a lot!
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
I just got listed
- Thread starter kbquincy
- Start date
Hi, I'm Kim, I'm relatively new to this site and haven't written much. I just got listed and am going through all the emotions. I too am scared at the stats, especially since my doctor said my survival stats are l5-10% ower because I have a drug resistant pseudomonias. I was wondering, did anyone else who was transplanted have drug resisted psdo before transplant? How did you do? What have been the risks for you? Also, just out of curiousity, what were your unos scores if you qualified under the new "need based list" I don't really have a good idea of how long it takes to get transplanted. Thanks so much. I have a feeling I will be on this site a lot!
Hi, I'm Kim, I'm relatively new to this site and haven't written much. I just got listed and am going through all the emotions. I too am scared at the stats, especially since my doctor said my survival stats are l5-10% ower because I have a drug resistant pseudomonias. I was wondering, did anyone else who was transplanted have drug resisted psdo before transplant? How did you do? What have been the risks for you? Also, just out of curiousity, what were your unos scores if you qualified under the new "need based list" I don't really have a good idea of how long it takes to get transplanted. Thanks so much. I have a feeling I will be on this site a lot!
Hi, I'm Kim, I'm relatively new to this site and haven't written much. I just got listed and am going through all the emotions. I too am scared at the stats, especially since my doctor said my survival stats are l5-10% ower because I have a drug resistant pseudomonias. I was wondering, did anyone else who was transplanted have drug resisted psdo before transplant? How did you do? What have been the risks for you? Also, just out of curiousity, what were your unos scores if you qualified under the new "need based list" I don't really have a good idea of how long it takes to get transplanted. Thanks so much. I have a feeling I will be on this site a lot!
Hi, I'm Kim, I'm relatively new to this site and haven't written much. I just got listed and am going through all the emotions. I too am scared at the stats, especially since my doctor said my survival stats are l5-10% ower because I have a drug resistant pseudomonias. I was wondering, did anyone else who was transplanted have drug resisted psdo before transplant? How did you do? What have been the risks for you? Also, just out of curiousity, what were your unos scores if you qualified under the new "need based list" I don't really have a good idea of how long it takes to get transplanted. Thanks so much. I have a feeling I will be on this site a lot!
Hi and congratulations on getting listed! Not really what you wanted it to all boil down to, but you're listed so that is great. I don't have any advice for having drug resistant pseudo. Sorry. But look at it this way, if they didn't think you had a good chance of survival post transplant then they wouldn't list you.
My Anna had a double lung transplant on July 25, 2007 at Stanford. We, just the two of us, relocated to CA from Texas to wait back in Feb. of this year. Her beginning score was like 37, then went up to 40 by March, then went down to 38 just the week before she got her transplant.
UNOS is a fascinating site, give it a look. You can take a look at your particular centers data and see how many people are listed. No names of course, so you don't know which one you are exactly. We didn't find out about how much you can narrow things down until about 2 months or so before Anna actually got her call. I think if we'd had known about it earlier, it might have drove us nuts but then again, it was nice to see how things were moving along for people. Click on Data, if you are interested in exploring. You can narrow things down by allocation score, blood type, gender, disease, all sorts of things. Our only interest was where Anna was on the list so we always put in the score first, then blood type and sometimes gender just to see.
This is a great place to be. You'll get lots of support. We wouldn't have made it through the wait if it hadn't been for everyone here.
My Anna had a double lung transplant on July 25, 2007 at Stanford. We, just the two of us, relocated to CA from Texas to wait back in Feb. of this year. Her beginning score was like 37, then went up to 40 by March, then went down to 38 just the week before she got her transplant.
UNOS is a fascinating site, give it a look. You can take a look at your particular centers data and see how many people are listed. No names of course, so you don't know which one you are exactly. We didn't find out about how much you can narrow things down until about 2 months or so before Anna actually got her call. I think if we'd had known about it earlier, it might have drove us nuts but then again, it was nice to see how things were moving along for people. Click on Data, if you are interested in exploring. You can narrow things down by allocation score, blood type, gender, disease, all sorts of things. Our only interest was where Anna was on the list so we always put in the score first, then blood type and sometimes gender just to see.
This is a great place to be. You'll get lots of support. We wouldn't have made it through the wait if it hadn't been for everyone here.
Hi and congratulations on getting listed! Not really what you wanted it to all boil down to, but you're listed so that is great. I don't have any advice for having drug resistant pseudo. Sorry. But look at it this way, if they didn't think you had a good chance of survival post transplant then they wouldn't list you.
My Anna had a double lung transplant on July 25, 2007 at Stanford. We, just the two of us, relocated to CA from Texas to wait back in Feb. of this year. Her beginning score was like 37, then went up to 40 by March, then went down to 38 just the week before she got her transplant.
UNOS is a fascinating site, give it a look. You can take a look at your particular centers data and see how many people are listed. No names of course, so you don't know which one you are exactly. We didn't find out about how much you can narrow things down until about 2 months or so before Anna actually got her call. I think if we'd had known about it earlier, it might have drove us nuts but then again, it was nice to see how things were moving along for people. Click on Data, if you are interested in exploring. You can narrow things down by allocation score, blood type, gender, disease, all sorts of things. Our only interest was where Anna was on the list so we always put in the score first, then blood type and sometimes gender just to see.
This is a great place to be. You'll get lots of support. We wouldn't have made it through the wait if it hadn't been for everyone here.
My Anna had a double lung transplant on July 25, 2007 at Stanford. We, just the two of us, relocated to CA from Texas to wait back in Feb. of this year. Her beginning score was like 37, then went up to 40 by March, then went down to 38 just the week before she got her transplant.
UNOS is a fascinating site, give it a look. You can take a look at your particular centers data and see how many people are listed. No names of course, so you don't know which one you are exactly. We didn't find out about how much you can narrow things down until about 2 months or so before Anna actually got her call. I think if we'd had known about it earlier, it might have drove us nuts but then again, it was nice to see how things were moving along for people. Click on Data, if you are interested in exploring. You can narrow things down by allocation score, blood type, gender, disease, all sorts of things. Our only interest was where Anna was on the list so we always put in the score first, then blood type and sometimes gender just to see.
This is a great place to be. You'll get lots of support. We wouldn't have made it through the wait if it hadn't been for everyone here.
Hi and congratulations on getting listed! Not really what you wanted it to all boil down to, but you're listed so that is great. I don't have any advice for having drug resistant pseudo. Sorry. But look at it this way, if they didn't think you had a good chance of survival post transplant then they wouldn't list you.
My Anna had a double lung transplant on July 25, 2007 at Stanford. We, just the two of us, relocated to CA from Texas to wait back in Feb. of this year. Her beginning score was like 37, then went up to 40 by March, then went down to 38 just the week before she got her transplant.
UNOS is a fascinating site, give it a look. You can take a look at your particular centers data and see how many people are listed. No names of course, so you don't know which one you are exactly. We didn't find out about how much you can narrow things down until about 2 months or so before Anna actually got her call. I think if we'd had known about it earlier, it might have drove us nuts but then again, it was nice to see how things were moving along for people. Click on Data, if you are interested in exploring. You can narrow things down by allocation score, blood type, gender, disease, all sorts of things. Our only interest was where Anna was on the list so we always put in the score first, then blood type and sometimes gender just to see.
This is a great place to be. You'll get lots of support. We wouldn't have made it through the wait if it hadn't been for everyone here.
My Anna had a double lung transplant on July 25, 2007 at Stanford. We, just the two of us, relocated to CA from Texas to wait back in Feb. of this year. Her beginning score was like 37, then went up to 40 by March, then went down to 38 just the week before she got her transplant.
UNOS is a fascinating site, give it a look. You can take a look at your particular centers data and see how many people are listed. No names of course, so you don't know which one you are exactly. We didn't find out about how much you can narrow things down until about 2 months or so before Anna actually got her call. I think if we'd had known about it earlier, it might have drove us nuts but then again, it was nice to see how things were moving along for people. Click on Data, if you are interested in exploring. You can narrow things down by allocation score, blood type, gender, disease, all sorts of things. Our only interest was where Anna was on the list so we always put in the score first, then blood type and sometimes gender just to see.
This is a great place to be. You'll get lots of support. We wouldn't have made it through the wait if it hadn't been for everyone here.
Hi and congratulations on getting listed! Not really what you wanted it to all boil down to, but you're listed so that is great. I don't have any advice for having drug resistant pseudo. Sorry. But look at it this way, if they didn't think you had a good chance of survival post transplant then they wouldn't list you.
My Anna had a double lung transplant on July 25, 2007 at Stanford. We, just the two of us, relocated to CA from Texas to wait back in Feb. of this year. Her beginning score was like 37, then went up to 40 by March, then went down to 38 just the week before she got her transplant.
UNOS is a fascinating site, give it a look. You can take a look at your particular centers data and see how many people are listed. No names of course, so you don't know which one you are exactly. We didn't find out about how much you can narrow things down until about 2 months or so before Anna actually got her call. I think if we'd had known about it earlier, it might have drove us nuts but then again, it was nice to see how things were moving along for people. Click on Data, if you are interested in exploring. You can narrow things down by allocation score, blood type, gender, disease, all sorts of things. Our only interest was where Anna was on the list so we always put in the score first, then blood type and sometimes gender just to see.
This is a great place to be. You'll get lots of support. We wouldn't have made it through the wait if it hadn't been for everyone here.
My Anna had a double lung transplant on July 25, 2007 at Stanford. We, just the two of us, relocated to CA from Texas to wait back in Feb. of this year. Her beginning score was like 37, then went up to 40 by March, then went down to 38 just the week before she got her transplant.
UNOS is a fascinating site, give it a look. You can take a look at your particular centers data and see how many people are listed. No names of course, so you don't know which one you are exactly. We didn't find out about how much you can narrow things down until about 2 months or so before Anna actually got her call. I think if we'd had known about it earlier, it might have drove us nuts but then again, it was nice to see how things were moving along for people. Click on Data, if you are interested in exploring. You can narrow things down by allocation score, blood type, gender, disease, all sorts of things. Our only interest was where Anna was on the list so we always put in the score first, then blood type and sometimes gender just to see.
This is a great place to be. You'll get lots of support. We wouldn't have made it through the wait if it hadn't been for everyone here.
Hi and congratulations on getting listed! Not really what you wanted it to all boil down to, but you're listed so that is great. I don't have any advice for having drug resistant pseudo. Sorry. But look at it this way, if they didn't think you had a good chance of survival post transplant then they wouldn't list you.
My Anna had a double lung transplant on July 25, 2007 at Stanford. We, just the two of us, relocated to CA from Texas to wait back in Feb. of this year. Her beginning score was like 37, then went up to 40 by March, then went down to 38 just the week before she got her transplant.
UNOS is a fascinating site, give it a look. You can take a look at your particular centers data and see how many people are listed. No names of course, so you don't know which one you are exactly. We didn't find out about how much you can narrow things down until about 2 months or so before Anna actually got her call. I think if we'd had known about it earlier, it might have drove us nuts but then again, it was nice to see how things were moving along for people. Click on Data, if you are interested in exploring. You can narrow things down by allocation score, blood type, gender, disease, all sorts of things. Our only interest was where Anna was on the list so we always put in the score first, then blood type and sometimes gender just to see.
This is a great place to be. You'll get lots of support. We wouldn't have made it through the wait if it hadn't been for everyone here.
My Anna had a double lung transplant on July 25, 2007 at Stanford. We, just the two of us, relocated to CA from Texas to wait back in Feb. of this year. Her beginning score was like 37, then went up to 40 by March, then went down to 38 just the week before she got her transplant.
UNOS is a fascinating site, give it a look. You can take a look at your particular centers data and see how many people are listed. No names of course, so you don't know which one you are exactly. We didn't find out about how much you can narrow things down until about 2 months or so before Anna actually got her call. I think if we'd had known about it earlier, it might have drove us nuts but then again, it was nice to see how things were moving along for people. Click on Data, if you are interested in exploring. You can narrow things down by allocation score, blood type, gender, disease, all sorts of things. Our only interest was where Anna was on the list so we always put in the score first, then blood type and sometimes gender just to see.
This is a great place to be. You'll get lots of support. We wouldn't have made it through the wait if it hadn't been for everyone here.
coltsfan715
New member
I am glad that you are listed - but sorry at the same time. As Liza said it is not what you may have wanted but at least you have the ability to be listed.
I also agree if your doctors did not think your outcome would be favorable they would not have listed you. I am not sure about the resistant Psuedo. I did culture Psuedo and MRSA before I had my transplant in May 2007 and have done fantastic since then.
I was terrified too of all the stats and the possible issues that could come from transplant. That is normal to go through I think. You are still trying to wrap your head around what is going on and the possibilities with what you are dealing with.
I had major anxiety and stress over the whole thing for months. Then one day I just realized that I didn't need to worry about stats - I was going to make sure that I was MY OWN set of statistics. I wasn't going to let anyone else decide what would happen to me based on a bunch of numbers. I also stopped asking questions. I reached a point where the answers to some of my questions weren't really helping me at all they were just scaring me even more. I sat down with myself and decided that I was doing "this" (transplant) regardless of what the answer to my questions were, so after that it didn't matter. I figured will the meds, hospital stay, chest tubes, whatever keep me from having a transplant - no no and no. So I just stopped asking. I started asking silly questions like - can I still color my hair? or can I have a steak med. rare? stuff like that. Stuff that didn't seem important in the overall picture but that I was curious about none the less. Harmless answers really - okay so I can't eat a steak med rare I can still have steak cooked well done and that did NOT freak me out, so less anxiety.
I was listed in March 2007 and was transplant in May 2007. My Unos score was somewhere around 40 I think when I was called. I am not for certain though. My center made a point of not telling me what my score was or where I was listed. They just told me to be ready at anytime. I waited roughly 6 weeks, which is rather quick but it was a busy summer here in Florida for transplants.
I definitely agree with Liza to check out the Unos.org website when you get a chance it has a lot of useful info.
Best of Luck to you and if you ever want to just chat or talk my email is divawithwings@gmail.com
Best Wishes,
Lindsey
I also agree if your doctors did not think your outcome would be favorable they would not have listed you. I am not sure about the resistant Psuedo. I did culture Psuedo and MRSA before I had my transplant in May 2007 and have done fantastic since then.
I was terrified too of all the stats and the possible issues that could come from transplant. That is normal to go through I think. You are still trying to wrap your head around what is going on and the possibilities with what you are dealing with.
I had major anxiety and stress over the whole thing for months. Then one day I just realized that I didn't need to worry about stats - I was going to make sure that I was MY OWN set of statistics. I wasn't going to let anyone else decide what would happen to me based on a bunch of numbers. I also stopped asking questions. I reached a point where the answers to some of my questions weren't really helping me at all they were just scaring me even more. I sat down with myself and decided that I was doing "this" (transplant) regardless of what the answer to my questions were, so after that it didn't matter. I figured will the meds, hospital stay, chest tubes, whatever keep me from having a transplant - no no and no. So I just stopped asking. I started asking silly questions like - can I still color my hair? or can I have a steak med. rare? stuff like that. Stuff that didn't seem important in the overall picture but that I was curious about none the less. Harmless answers really - okay so I can't eat a steak med rare I can still have steak cooked well done and that did NOT freak me out, so less anxiety.
I was listed in March 2007 and was transplant in May 2007. My Unos score was somewhere around 40 I think when I was called. I am not for certain though. My center made a point of not telling me what my score was or where I was listed. They just told me to be ready at anytime. I waited roughly 6 weeks, which is rather quick but it was a busy summer here in Florida for transplants.
I definitely agree with Liza to check out the Unos.org website when you get a chance it has a lot of useful info.
Best of Luck to you and if you ever want to just chat or talk my email is divawithwings@gmail.com
Best Wishes,
Lindsey
coltsfan715
New member
I am glad that you are listed - but sorry at the same time. As Liza said it is not what you may have wanted but at least you have the ability to be listed.
I also agree if your doctors did not think your outcome would be favorable they would not have listed you. I am not sure about the resistant Psuedo. I did culture Psuedo and MRSA before I had my transplant in May 2007 and have done fantastic since then.
I was terrified too of all the stats and the possible issues that could come from transplant. That is normal to go through I think. You are still trying to wrap your head around what is going on and the possibilities with what you are dealing with.
I had major anxiety and stress over the whole thing for months. Then one day I just realized that I didn't need to worry about stats - I was going to make sure that I was MY OWN set of statistics. I wasn't going to let anyone else decide what would happen to me based on a bunch of numbers. I also stopped asking questions. I reached a point where the answers to some of my questions weren't really helping me at all they were just scaring me even more. I sat down with myself and decided that I was doing "this" (transplant) regardless of what the answer to my questions were, so after that it didn't matter. I figured will the meds, hospital stay, chest tubes, whatever keep me from having a transplant - no no and no. So I just stopped asking. I started asking silly questions like - can I still color my hair? or can I have a steak med. rare? stuff like that. Stuff that didn't seem important in the overall picture but that I was curious about none the less. Harmless answers really - okay so I can't eat a steak med rare I can still have steak cooked well done and that did NOT freak me out, so less anxiety.
I was listed in March 2007 and was transplant in May 2007. My Unos score was somewhere around 40 I think when I was called. I am not for certain though. My center made a point of not telling me what my score was or where I was listed. They just told me to be ready at anytime. I waited roughly 6 weeks, which is rather quick but it was a busy summer here in Florida for transplants.
I definitely agree with Liza to check out the Unos.org website when you get a chance it has a lot of useful info.
Best of Luck to you and if you ever want to just chat or talk my email is divawithwings@gmail.com
Best Wishes,
Lindsey
I also agree if your doctors did not think your outcome would be favorable they would not have listed you. I am not sure about the resistant Psuedo. I did culture Psuedo and MRSA before I had my transplant in May 2007 and have done fantastic since then.
I was terrified too of all the stats and the possible issues that could come from transplant. That is normal to go through I think. You are still trying to wrap your head around what is going on and the possibilities with what you are dealing with.
I had major anxiety and stress over the whole thing for months. Then one day I just realized that I didn't need to worry about stats - I was going to make sure that I was MY OWN set of statistics. I wasn't going to let anyone else decide what would happen to me based on a bunch of numbers. I also stopped asking questions. I reached a point where the answers to some of my questions weren't really helping me at all they were just scaring me even more. I sat down with myself and decided that I was doing "this" (transplant) regardless of what the answer to my questions were, so after that it didn't matter. I figured will the meds, hospital stay, chest tubes, whatever keep me from having a transplant - no no and no. So I just stopped asking. I started asking silly questions like - can I still color my hair? or can I have a steak med. rare? stuff like that. Stuff that didn't seem important in the overall picture but that I was curious about none the less. Harmless answers really - okay so I can't eat a steak med rare I can still have steak cooked well done and that did NOT freak me out, so less anxiety.
I was listed in March 2007 and was transplant in May 2007. My Unos score was somewhere around 40 I think when I was called. I am not for certain though. My center made a point of not telling me what my score was or where I was listed. They just told me to be ready at anytime. I waited roughly 6 weeks, which is rather quick but it was a busy summer here in Florida for transplants.
I definitely agree with Liza to check out the Unos.org website when you get a chance it has a lot of useful info.
Best of Luck to you and if you ever want to just chat or talk my email is divawithwings@gmail.com
Best Wishes,
Lindsey
coltsfan715
New member
I am glad that you are listed - but sorry at the same time. As Liza said it is not what you may have wanted but at least you have the ability to be listed.
I also agree if your doctors did not think your outcome would be favorable they would not have listed you. I am not sure about the resistant Psuedo. I did culture Psuedo and MRSA before I had my transplant in May 2007 and have done fantastic since then.
I was terrified too of all the stats and the possible issues that could come from transplant. That is normal to go through I think. You are still trying to wrap your head around what is going on and the possibilities with what you are dealing with.
I had major anxiety and stress over the whole thing for months. Then one day I just realized that I didn't need to worry about stats - I was going to make sure that I was MY OWN set of statistics. I wasn't going to let anyone else decide what would happen to me based on a bunch of numbers. I also stopped asking questions. I reached a point where the answers to some of my questions weren't really helping me at all they were just scaring me even more. I sat down with myself and decided that I was doing "this" (transplant) regardless of what the answer to my questions were, so after that it didn't matter. I figured will the meds, hospital stay, chest tubes, whatever keep me from having a transplant - no no and no. So I just stopped asking. I started asking silly questions like - can I still color my hair? or can I have a steak med. rare? stuff like that. Stuff that didn't seem important in the overall picture but that I was curious about none the less. Harmless answers really - okay so I can't eat a steak med rare I can still have steak cooked well done and that did NOT freak me out, so less anxiety.
I was listed in March 2007 and was transplant in May 2007. My Unos score was somewhere around 40 I think when I was called. I am not for certain though. My center made a point of not telling me what my score was or where I was listed. They just told me to be ready at anytime. I waited roughly 6 weeks, which is rather quick but it was a busy summer here in Florida for transplants.
I definitely agree with Liza to check out the Unos.org website when you get a chance it has a lot of useful info.
Best of Luck to you and if you ever want to just chat or talk my email is divawithwings@gmail.com
Best Wishes,
Lindsey
I also agree if your doctors did not think your outcome would be favorable they would not have listed you. I am not sure about the resistant Psuedo. I did culture Psuedo and MRSA before I had my transplant in May 2007 and have done fantastic since then.
I was terrified too of all the stats and the possible issues that could come from transplant. That is normal to go through I think. You are still trying to wrap your head around what is going on and the possibilities with what you are dealing with.
I had major anxiety and stress over the whole thing for months. Then one day I just realized that I didn't need to worry about stats - I was going to make sure that I was MY OWN set of statistics. I wasn't going to let anyone else decide what would happen to me based on a bunch of numbers. I also stopped asking questions. I reached a point where the answers to some of my questions weren't really helping me at all they were just scaring me even more. I sat down with myself and decided that I was doing "this" (transplant) regardless of what the answer to my questions were, so after that it didn't matter. I figured will the meds, hospital stay, chest tubes, whatever keep me from having a transplant - no no and no. So I just stopped asking. I started asking silly questions like - can I still color my hair? or can I have a steak med. rare? stuff like that. Stuff that didn't seem important in the overall picture but that I was curious about none the less. Harmless answers really - okay so I can't eat a steak med rare I can still have steak cooked well done and that did NOT freak me out, so less anxiety.
I was listed in March 2007 and was transplant in May 2007. My Unos score was somewhere around 40 I think when I was called. I am not for certain though. My center made a point of not telling me what my score was or where I was listed. They just told me to be ready at anytime. I waited roughly 6 weeks, which is rather quick but it was a busy summer here in Florida for transplants.
I definitely agree with Liza to check out the Unos.org website when you get a chance it has a lot of useful info.
Best of Luck to you and if you ever want to just chat or talk my email is divawithwings@gmail.com
Best Wishes,
Lindsey
coltsfan715
New member
I am glad that you are listed - but sorry at the same time. As Liza said it is not what you may have wanted but at least you have the ability to be listed.
I also agree if your doctors did not think your outcome would be favorable they would not have listed you. I am not sure about the resistant Psuedo. I did culture Psuedo and MRSA before I had my transplant in May 2007 and have done fantastic since then.
I was terrified too of all the stats and the possible issues that could come from transplant. That is normal to go through I think. You are still trying to wrap your head around what is going on and the possibilities with what you are dealing with.
I had major anxiety and stress over the whole thing for months. Then one day I just realized that I didn't need to worry about stats - I was going to make sure that I was MY OWN set of statistics. I wasn't going to let anyone else decide what would happen to me based on a bunch of numbers. I also stopped asking questions. I reached a point where the answers to some of my questions weren't really helping me at all they were just scaring me even more. I sat down with myself and decided that I was doing "this" (transplant) regardless of what the answer to my questions were, so after that it didn't matter. I figured will the meds, hospital stay, chest tubes, whatever keep me from having a transplant - no no and no. So I just stopped asking. I started asking silly questions like - can I still color my hair? or can I have a steak med. rare? stuff like that. Stuff that didn't seem important in the overall picture but that I was curious about none the less. Harmless answers really - okay so I can't eat a steak med rare I can still have steak cooked well done and that did NOT freak me out, so less anxiety.
I was listed in March 2007 and was transplant in May 2007. My Unos score was somewhere around 40 I think when I was called. I am not for certain though. My center made a point of not telling me what my score was or where I was listed. They just told me to be ready at anytime. I waited roughly 6 weeks, which is rather quick but it was a busy summer here in Florida for transplants.
I definitely agree with Liza to check out the Unos.org website when you get a chance it has a lot of useful info.
Best of Luck to you and if you ever want to just chat or talk my email is divawithwings@gmail.com
Best Wishes,
Lindsey
I also agree if your doctors did not think your outcome would be favorable they would not have listed you. I am not sure about the resistant Psuedo. I did culture Psuedo and MRSA before I had my transplant in May 2007 and have done fantastic since then.
I was terrified too of all the stats and the possible issues that could come from transplant. That is normal to go through I think. You are still trying to wrap your head around what is going on and the possibilities with what you are dealing with.
I had major anxiety and stress over the whole thing for months. Then one day I just realized that I didn't need to worry about stats - I was going to make sure that I was MY OWN set of statistics. I wasn't going to let anyone else decide what would happen to me based on a bunch of numbers. I also stopped asking questions. I reached a point where the answers to some of my questions weren't really helping me at all they were just scaring me even more. I sat down with myself and decided that I was doing "this" (transplant) regardless of what the answer to my questions were, so after that it didn't matter. I figured will the meds, hospital stay, chest tubes, whatever keep me from having a transplant - no no and no. So I just stopped asking. I started asking silly questions like - can I still color my hair? or can I have a steak med. rare? stuff like that. Stuff that didn't seem important in the overall picture but that I was curious about none the less. Harmless answers really - okay so I can't eat a steak med rare I can still have steak cooked well done and that did NOT freak me out, so less anxiety.
I was listed in March 2007 and was transplant in May 2007. My Unos score was somewhere around 40 I think when I was called. I am not for certain though. My center made a point of not telling me what my score was or where I was listed. They just told me to be ready at anytime. I waited roughly 6 weeks, which is rather quick but it was a busy summer here in Florida for transplants.
I definitely agree with Liza to check out the Unos.org website when you get a chance it has a lot of useful info.
Best of Luck to you and if you ever want to just chat or talk my email is divawithwings@gmail.com
Best Wishes,
Lindsey
coltsfan715
New member
I am glad that you are listed - but sorry at the same time. As Liza said it is not what you may have wanted but at least you have the ability to be listed.
I also agree if your doctors did not think your outcome would be favorable they would not have listed you. I am not sure about the resistant Psuedo. I did culture Psuedo and MRSA before I had my transplant in May 2007 and have done fantastic since then.
I was terrified too of all the stats and the possible issues that could come from transplant. That is normal to go through I think. You are still trying to wrap your head around what is going on and the possibilities with what you are dealing with.
I had major anxiety and stress over the whole thing for months. Then one day I just realized that I didn't need to worry about stats - I was going to make sure that I was MY OWN set of statistics. I wasn't going to let anyone else decide what would happen to me based on a bunch of numbers. I also stopped asking questions. I reached a point where the answers to some of my questions weren't really helping me at all they were just scaring me even more. I sat down with myself and decided that I was doing "this" (transplant) regardless of what the answer to my questions were, so after that it didn't matter. I figured will the meds, hospital stay, chest tubes, whatever keep me from having a transplant - no no and no. So I just stopped asking. I started asking silly questions like - can I still color my hair? or can I have a steak med. rare? stuff like that. Stuff that didn't seem important in the overall picture but that I was curious about none the less. Harmless answers really - okay so I can't eat a steak med rare I can still have steak cooked well done and that did NOT freak me out, so less anxiety.
I was listed in March 2007 and was transplant in May 2007. My Unos score was somewhere around 40 I think when I was called. I am not for certain though. My center made a point of not telling me what my score was or where I was listed. They just told me to be ready at anytime. I waited roughly 6 weeks, which is rather quick but it was a busy summer here in Florida for transplants.
I definitely agree with Liza to check out the Unos.org website when you get a chance it has a lot of useful info.
Best of Luck to you and if you ever want to just chat or talk my email is divawithwings@gmail.com
Best Wishes,
Lindsey
I also agree if your doctors did not think your outcome would be favorable they would not have listed you. I am not sure about the resistant Psuedo. I did culture Psuedo and MRSA before I had my transplant in May 2007 and have done fantastic since then.
I was terrified too of all the stats and the possible issues that could come from transplant. That is normal to go through I think. You are still trying to wrap your head around what is going on and the possibilities with what you are dealing with.
I had major anxiety and stress over the whole thing for months. Then one day I just realized that I didn't need to worry about stats - I was going to make sure that I was MY OWN set of statistics. I wasn't going to let anyone else decide what would happen to me based on a bunch of numbers. I also stopped asking questions. I reached a point where the answers to some of my questions weren't really helping me at all they were just scaring me even more. I sat down with myself and decided that I was doing "this" (transplant) regardless of what the answer to my questions were, so after that it didn't matter. I figured will the meds, hospital stay, chest tubes, whatever keep me from having a transplant - no no and no. So I just stopped asking. I started asking silly questions like - can I still color my hair? or can I have a steak med. rare? stuff like that. Stuff that didn't seem important in the overall picture but that I was curious about none the less. Harmless answers really - okay so I can't eat a steak med rare I can still have steak cooked well done and that did NOT freak me out, so less anxiety.
I was listed in March 2007 and was transplant in May 2007. My Unos score was somewhere around 40 I think when I was called. I am not for certain though. My center made a point of not telling me what my score was or where I was listed. They just told me to be ready at anytime. I waited roughly 6 weeks, which is rather quick but it was a busy summer here in Florida for transplants.
I definitely agree with Liza to check out the Unos.org website when you get a chance it has a lot of useful info.
Best of Luck to you and if you ever want to just chat or talk my email is divawithwings@gmail.com
Best Wishes,
Lindsey