frustrated during this waiting

J

juliepie

New member
Hi everyone! I've been listed for 11 months now, and as I near the 1 year mark, I'm getting super frustrated at the lack of progress being made. I had a call in September, I was the backup and nobody got the lungs b/c the donor didn't fare too well, but since then I haven't heard anything.

I know they've been doing transplants, and from the data that unos publishes, i've managed to figure out that my LAS is between 35 and 40, but I don't know the actual number because the hospital won't tell me.

my parents want me to start thinking about double listing, has anyone else done that? I'm listed in Boston right now and usually people in the area go to Cleveland Clinic to double up, but I'm not sure what that process would entail. Would I have to move there to wait? Move there post-transplant? How am I supposed to get there if I need 24-h O2 and only have little 2 hour tanks?

i'm seeing my regular tx people in a month or so, right around my actual 1 year mark, I just want to have a sense of what needs to be done before I go in to talk to them.

ARGH this waiting is literally killing me! I've gone from 30% at listing to 16% now and I don't want these old lungs anymore!

I'm done now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

juliepie

New member
Hi everyone! I've been listed for 11 months now, and as I near the 1 year mark, I'm getting super frustrated at the lack of progress being made. I had a call in September, I was the backup and nobody got the lungs b/c the donor didn't fare too well, but since then I haven't heard anything.

I know they've been doing transplants, and from the data that unos publishes, i've managed to figure out that my LAS is between 35 and 40, but I don't know the actual number because the hospital won't tell me.

my parents want me to start thinking about double listing, has anyone else done that? I'm listed in Boston right now and usually people in the area go to Cleveland Clinic to double up, but I'm not sure what that process would entail. Would I have to move there to wait? Move there post-transplant? How am I supposed to get there if I need 24-h O2 and only have little 2 hour tanks?

i'm seeing my regular tx people in a month or so, right around my actual 1 year mark, I just want to have a sense of what needs to be done before I go in to talk to them.

ARGH this waiting is literally killing me! I've gone from 30% at listing to 16% now and I don't want these old lungs anymore!

I'm done now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

juliepie

New member
Hi everyone! I've been listed for 11 months now, and as I near the 1 year mark, I'm getting super frustrated at the lack of progress being made. I had a call in September, I was the backup and nobody got the lungs b/c the donor didn't fare too well, but since then I haven't heard anything.

I know they've been doing transplants, and from the data that unos publishes, i've managed to figure out that my LAS is between 35 and 40, but I don't know the actual number because the hospital won't tell me.

my parents want me to start thinking about double listing, has anyone else done that? I'm listed in Boston right now and usually people in the area go to Cleveland Clinic to double up, but I'm not sure what that process would entail. Would I have to move there to wait? Move there post-transplant? How am I supposed to get there if I need 24-h O2 and only have little 2 hour tanks?

i'm seeing my regular tx people in a month or so, right around my actual 1 year mark, I just want to have a sense of what needs to be done before I go in to talk to them.

ARGH this waiting is literally killing me! I've gone from 30% at listing to 16% now and I don't want these old lungs anymore!

I'm done now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

juliepie

New member
Hi everyone! I've been listed for 11 months now, and as I near the 1 year mark, I'm getting super frustrated at the lack of progress being made. I had a call in September, I was the backup and nobody got the lungs b/c the donor didn't fare too well, but since then I haven't heard anything.

I know they've been doing transplants, and from the data that unos publishes, i've managed to figure out that my LAS is between 35 and 40, but I don't know the actual number because the hospital won't tell me.

my parents want me to start thinking about double listing, has anyone else done that? I'm listed in Boston right now and usually people in the area go to Cleveland Clinic to double up, but I'm not sure what that process would entail. Would I have to move there to wait? Move there post-transplant? How am I supposed to get there if I need 24-h O2 and only have little 2 hour tanks?

i'm seeing my regular tx people in a month or so, right around my actual 1 year mark, I just want to have a sense of what needs to be done before I go in to talk to them.

ARGH this waiting is literally killing me! I've gone from 30% at listing to 16% now and I don't want these old lungs anymore!

I'm done now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

juliepie

New member
Hi everyone! I've been listed for 11 months now, and as I near the 1 year mark, I'm getting super frustrated at the lack of progress being made. I had a call in September, I was the backup and nobody got the lungs b/c the donor didn't fare too well, but since then I haven't heard anything.
<br />
<br />I know they've been doing transplants, and from the data that unos publishes, i've managed to figure out that my LAS is between 35 and 40, but I don't know the actual number because the hospital won't tell me.
<br />
<br />my parents want me to start thinking about double listing, has anyone else done that? I'm listed in Boston right now and usually people in the area go to Cleveland Clinic to double up, but I'm not sure what that process would entail. Would I have to move there to wait? Move there post-transplant? How am I supposed to get there if I need 24-h O2 and only have little 2 hour tanks?
<br />
<br />i'm seeing my regular tx people in a month or so, right around my actual 1 year mark, I just want to have a sense of what needs to be done before I go in to talk to them.
<br />
<br />ARGH this waiting is literally killing me! I've gone from 30% at listing to 16% now and I don't want these old lungs anymore!
<br />
<br />I'm done now <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
N

NYCLawGirl

New member
sorry about the long wait julie -- i hear you on it being a frustrating time! i totally don't get why docs are so secretive about scores and places on the list. don't they want us to be as informed as possible? anyway, i just wanted to pass along my support. waiting sucks.

does anyone ever double list with columbia at your center? just wondering. a lot of folks at col pres double list with penn, it seems. as for the O2, your tx team might be able to set you up with some bigger tanks. my guess is if you got a call from cleveland you would need to be life-flighted in (no time to fly commercial!), so they would have O2 on the plane. and i think you would need to live there after the surgery for anywhere from 2-6 months -- at least that's what duke's rule was when i was considering listing down there instead of nyc.

good luck!
 
N

NYCLawGirl

New member
sorry about the long wait julie -- i hear you on it being a frustrating time! i totally don't get why docs are so secretive about scores and places on the list. don't they want us to be as informed as possible? anyway, i just wanted to pass along my support. waiting sucks.

does anyone ever double list with columbia at your center? just wondering. a lot of folks at col pres double list with penn, it seems. as for the O2, your tx team might be able to set you up with some bigger tanks. my guess is if you got a call from cleveland you would need to be life-flighted in (no time to fly commercial!), so they would have O2 on the plane. and i think you would need to live there after the surgery for anywhere from 2-6 months -- at least that's what duke's rule was when i was considering listing down there instead of nyc.

good luck!
 
N

NYCLawGirl

New member
sorry about the long wait julie -- i hear you on it being a frustrating time! i totally don't get why docs are so secretive about scores and places on the list. don't they want us to be as informed as possible? anyway, i just wanted to pass along my support. waiting sucks.

does anyone ever double list with columbia at your center? just wondering. a lot of folks at col pres double list with penn, it seems. as for the O2, your tx team might be able to set you up with some bigger tanks. my guess is if you got a call from cleveland you would need to be life-flighted in (no time to fly commercial!), so they would have O2 on the plane. and i think you would need to live there after the surgery for anywhere from 2-6 months -- at least that's what duke's rule was when i was considering listing down there instead of nyc.

good luck!
 
N

NYCLawGirl

New member
sorry about the long wait julie -- i hear you on it being a frustrating time! i totally don't get why docs are so secretive about scores and places on the list. don't they want us to be as informed as possible? anyway, i just wanted to pass along my support. waiting sucks.

does anyone ever double list with columbia at your center? just wondering. a lot of folks at col pres double list with penn, it seems. as for the O2, your tx team might be able to set you up with some bigger tanks. my guess is if you got a call from cleveland you would need to be life-flighted in (no time to fly commercial!), so they would have O2 on the plane. and i think you would need to live there after the surgery for anywhere from 2-6 months -- at least that's what duke's rule was when i was considering listing down there instead of nyc.

good luck!
 
N

NYCLawGirl

New member
sorry about the long wait julie -- i hear you on it being a frustrating time! i totally don't get why docs are so secretive about scores and places on the list. don't they want us to be as informed as possible? anyway, i just wanted to pass along my support. waiting sucks.
<br />
<br />does anyone ever double list with columbia at your center? just wondering. a lot of folks at col pres double list with penn, it seems. as for the O2, your tx team might be able to set you up with some bigger tanks. my guess is if you got a call from cleveland you would need to be life-flighted in (no time to fly commercial!), so they would have O2 on the plane. and i think you would need to live there after the surgery for anywhere from 2-6 months -- at least that's what duke's rule was when i was considering listing down there instead of nyc.
<br />
<br />good luck!
 
J

juliepie

New member
my question about the oxygen came out wrong... i would need to rent a portable concentrator to go to cleveland for an evaluation? has anyone done that? I only have the home fill system.

thanks piper, it's nice hearing from people who are in the same situation.
 
J

juliepie

New member
my question about the oxygen came out wrong... i would need to rent a portable concentrator to go to cleveland for an evaluation? has anyone done that? I only have the home fill system.

thanks piper, it's nice hearing from people who are in the same situation.
 
J

juliepie

New member
my question about the oxygen came out wrong... i would need to rent a portable concentrator to go to cleveland for an evaluation? has anyone done that? I only have the home fill system.

thanks piper, it's nice hearing from people who are in the same situation.
 
J

juliepie

New member
my question about the oxygen came out wrong... i would need to rent a portable concentrator to go to cleveland for an evaluation? has anyone done that? I only have the home fill system.

thanks piper, it's nice hearing from people who are in the same situation.
 
J

juliepie

New member
my question about the oxygen came out wrong... i would need to rent a portable concentrator to go to cleveland for an evaluation? has anyone done that? I only have the home fill system.
<br />
<br />thanks piper, it's nice hearing from people who are in the same situation.
 
L

Lex

New member
If the hospital won't tell you your LAS, look elsewhere. I wouldn't trust a team that keeps me in the dark. At Columbia, when I asked Dr. Wilt if I could find out my LAS, her exact reply was, "there aren't any secrets here."

That's the kind of center you want....ESPECIALLY post TX.

Just my opinion.
 
L

Lex

New member
If the hospital won't tell you your LAS, look elsewhere. I wouldn't trust a team that keeps me in the dark. At Columbia, when I asked Dr. Wilt if I could find out my LAS, her exact reply was, "there aren't any secrets here."

That's the kind of center you want....ESPECIALLY post TX.

Just my opinion.
 
L

Lex

New member
If the hospital won't tell you your LAS, look elsewhere. I wouldn't trust a team that keeps me in the dark. At Columbia, when I asked Dr. Wilt if I could find out my LAS, her exact reply was, "there aren't any secrets here."

That's the kind of center you want....ESPECIALLY post TX.

Just my opinion.
 
L

Lex

New member
If the hospital won't tell you your LAS, look elsewhere. I wouldn't trust a team that keeps me in the dark. At Columbia, when I asked Dr. Wilt if I could find out my LAS, her exact reply was, "there aren't any secrets here."

That's the kind of center you want....ESPECIALLY post TX.

Just my opinion.
 
L

Lex

New member
If the hospital won't tell you your LAS, look elsewhere. I wouldn't trust a team that keeps me in the dark. At Columbia, when I asked Dr. Wilt if I could find out my LAS, her exact reply was, "there aren't any secrets here."
<br />
<br />That's the kind of center you want....ESPECIALLY post TX.
<br />
<br />Just my opinion.
 
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