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Transplant Survival Rate

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coltsfan715

New member
Well I posted this in the transplant forum and I only got one response - so I figured I would try posting it here and see if anyone else could offer input.

What was your transplant centers survival rate - or if you are waiting what is you centers transplant survival rate ....

1 Month Out?

1 Yr Out?

3 Yrs Out?

and if you have had a transplant how far out are you now?

Just my curious mind at work .. Thank you for sharing

Lindsey
 
C

coltsfan715

New member
Well I posted this in the transplant forum and I only got one response - so I figured I would try posting it here and see if anyone else could offer input.

What was your transplant centers survival rate - or if you are waiting what is you centers transplant survival rate ....

1 Month Out?

1 Yr Out?

3 Yrs Out?

and if you have had a transplant how far out are you now?

Just my curious mind at work .. Thank you for sharing

Lindsey
 
C

coltsfan715

New member
Well I posted this in the transplant forum and I only got one response - so I figured I would try posting it here and see if anyone else could offer input.

What was your transplant centers survival rate - or if you are waiting what is you centers transplant survival rate ....

1 Month Out?

1 Yr Out?

3 Yrs Out?

and if you have had a transplant how far out are you now?

Just my curious mind at work .. Thank you for sharing

Lindsey
 
B

blindhearted

New member
I'm glad u asked this Lindsey. I have been wondering the same thing.

I go to Duke. I havent been evaluated. But I have been told the average rate from my doctor. But this is what I have heard (please correct me if I am wrong if someone has been evaluated at Duke) from someone who has been evaluated...

Takes 1 yr to recover.
Average Survival rate is 5 yrs. (I think its a 50/50 chance of making it past 5yrs)
Longest post transplant is only one person, 8yrs post transplant so far.

I'm not sure if these are good odds or not, so it will be interesting to see what ppl say.
 
B

blindhearted

New member
I'm glad u asked this Lindsey. I have been wondering the same thing.

I go to Duke. I havent been evaluated. But I have been told the average rate from my doctor. But this is what I have heard (please correct me if I am wrong if someone has been evaluated at Duke) from someone who has been evaluated...

Takes 1 yr to recover.
Average Survival rate is 5 yrs. (I think its a 50/50 chance of making it past 5yrs)
Longest post transplant is only one person, 8yrs post transplant so far.

I'm not sure if these are good odds or not, so it will be interesting to see what ppl say.
 
B

blindhearted

New member
I'm glad u asked this Lindsey. I have been wondering the same thing.

I go to Duke. I havent been evaluated. But I have been told the average rate from my doctor. But this is what I have heard (please correct me if I am wrong if someone has been evaluated at Duke) from someone who has been evaluated...

Takes 1 yr to recover.
Average Survival rate is 5 yrs. (I think its a 50/50 chance of making it past 5yrs)
Longest post transplant is only one person, 8yrs post transplant so far.

I'm not sure if these are good odds or not, so it will be interesting to see what ppl say.
 
F

fr3ak

Guest
I posted this in the transplant section but figured I would post it here as well

What was your transplant centers survival rate - or if you are waiting what is you centers transplant survival rate ....

Brisbane Australia

1 Month Out? To my knowledge for the 1 month survival we are pretty much at 100%

1 Yr Out? roughly 90%

3 Yrs Out? roughly 80%

and if you have had a transplant how far out are you now? 4 years in a months time (december 29th, I have also never had rejection in those 4 years)

Good luck with your research and eventual evaluation Lindsey

ps to Blindhearted the longest surviving CF transplanted person is actually 16 years out!!!

I also know that there is a CF in Australia who is 15 years out...

I have many friends that are on their 10 year straight....

so the actual survivial rate is going up
 
F

fr3ak

Guest
I posted this in the transplant section but figured I would post it here as well

What was your transplant centers survival rate - or if you are waiting what is you centers transplant survival rate ....

Brisbane Australia

1 Month Out? To my knowledge for the 1 month survival we are pretty much at 100%

1 Yr Out? roughly 90%

3 Yrs Out? roughly 80%

and if you have had a transplant how far out are you now? 4 years in a months time (december 29th, I have also never had rejection in those 4 years)

Good luck with your research and eventual evaluation Lindsey

ps to Blindhearted the longest surviving CF transplanted person is actually 16 years out!!!

I also know that there is a CF in Australia who is 15 years out...

I have many friends that are on their 10 year straight....

so the actual survivial rate is going up
 
F

fr3ak

Guest
I posted this in the transplant section but figured I would post it here as well

What was your transplant centers survival rate - or if you are waiting what is you centers transplant survival rate ....

Brisbane Australia

1 Month Out? To my knowledge for the 1 month survival we are pretty much at 100%

1 Yr Out? roughly 90%

3 Yrs Out? roughly 80%

and if you have had a transplant how far out are you now? 4 years in a months time (december 29th, I have also never had rejection in those 4 years)

Good luck with your research and eventual evaluation Lindsey

ps to Blindhearted the longest surviving CF transplanted person is actually 16 years out!!!

I also know that there is a CF in Australia who is 15 years out...

I have many friends that are on their 10 year straight....

so the actual survivial rate is going up
 
J

Joanne

New member
Survival at my center varies by the illness the person orginally has. UNC for 1 year is about 92%. I am not sure of the other numbers, but they tend to be higher than other centers. You have to separate out CF, Alpha, Emphysema, IPF and use those numbers.

Danyell, if Duke is saying 1 year to recover... that is long. I did take 11 months, but many complications. I have an idea that Duke would not say one year, maybe a person who had their tx there might of said that.

Also if Duke said that the longest surviving person is 8 years at their center...... go somewhere else. That is not good!! I have an idea again you heard this through the grapevine, or a patient, and most patients don't know the numbers.
I do a lot of research on it. I have a friend who is about 10 or 11 years post from Duke, but there are more out there longer I am sure.

I am post 9 years, and a friend of mine just died, but was 19 years post lung tx. There are many people out there who are post 10-18 years too.

But if that is Duke's figures, I would really consider another center.

As far as the 50% alive at 5 years. Well that might of risen also a bit. Also the other 50% are alive, so that is not horrible.

Joanne Schum
 
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Joanne

New member
Survival at my center varies by the illness the person orginally has. UNC for 1 year is about 92%. I am not sure of the other numbers, but they tend to be higher than other centers. You have to separate out CF, Alpha, Emphysema, IPF and use those numbers.

Danyell, if Duke is saying 1 year to recover... that is long. I did take 11 months, but many complications. I have an idea that Duke would not say one year, maybe a person who had their tx there might of said that.

Also if Duke said that the longest surviving person is 8 years at their center...... go somewhere else. That is not good!! I have an idea again you heard this through the grapevine, or a patient, and most patients don't know the numbers.
I do a lot of research on it. I have a friend who is about 10 or 11 years post from Duke, but there are more out there longer I am sure.

I am post 9 years, and a friend of mine just died, but was 19 years post lung tx. There are many people out there who are post 10-18 years too.

But if that is Duke's figures, I would really consider another center.

As far as the 50% alive at 5 years. Well that might of risen also a bit. Also the other 50% are alive, so that is not horrible.

Joanne Schum
 
J

Joanne

New member
Survival at my center varies by the illness the person orginally has. UNC for 1 year is about 92%. I am not sure of the other numbers, but they tend to be higher than other centers. You have to separate out CF, Alpha, Emphysema, IPF and use those numbers.

Danyell, if Duke is saying 1 year to recover... that is long. I did take 11 months, but many complications. I have an idea that Duke would not say one year, maybe a person who had their tx there might of said that.

Also if Duke said that the longest surviving person is 8 years at their center...... go somewhere else. That is not good!! I have an idea again you heard this through the grapevine, or a patient, and most patients don't know the numbers.
I do a lot of research on it. I have a friend who is about 10 or 11 years post from Duke, but there are more out there longer I am sure.

I am post 9 years, and a friend of mine just died, but was 19 years post lung tx. There are many people out there who are post 10-18 years too.

But if that is Duke's figures, I would really consider another center.

As far as the 50% alive at 5 years. Well that might of risen also a bit. Also the other 50% are alive, so that is not horrible.

Joanne Schum
 
C

coltsfan715

New member
What if a center has only been doing transplants for 5 yrs say? about 10? Would that be a flag that I should go somewhere else? I don't know just a thought when you said that about 8 yrs being the longest surviving that as being bad.

I guess though if the center has been doing transplants for 5 years and has several patients that are 5 years out that would be good.

Lindsey
 
C

coltsfan715

New member
What if a center has only been doing transplants for 5 yrs say? about 10? Would that be a flag that I should go somewhere else? I don't know just a thought when you said that about 8 yrs being the longest surviving that as being bad.

I guess though if the center has been doing transplants for 5 years and has several patients that are 5 years out that would be good.

Lindsey
 
C

coltsfan715

New member
What if a center has only been doing transplants for 5 yrs say? about 10? Would that be a flag that I should go somewhere else? I don't know just a thought when you said that about 8 yrs being the longest surviving that as being bad.

I guess though if the center has been doing transplants for 5 years and has several patients that are 5 years out that would be good.

Lindsey
 
J

Joanne

New member
Lindsey,

If a center has been open for 5 years, and have survivors that long, that is good. I am guessing you might be referring to Tampa. Not sure.

Also you can go to the UNOS site and read stats. Some centers say they are not correct, not sure. But the best thing is call the center and get the stats right from the horses mouth, so to speak

www.UNOS.org

Joanne
 
J

Joanne

New member
Lindsey,

If a center has been open for 5 years, and have survivors that long, that is good. I am guessing you might be referring to Tampa. Not sure.

Also you can go to the UNOS site and read stats. Some centers say they are not correct, not sure. But the best thing is call the center and get the stats right from the horses mouth, so to speak

www.UNOS.org

Joanne
 
J

Joanne

New member
Lindsey,

If a center has been open for 5 years, and have survivors that long, that is good. I am guessing you might be referring to Tampa. Not sure.

Also you can go to the UNOS site and read stats. Some centers say they are not correct, not sure. But the best thing is call the center and get the stats right from the horses mouth, so to speak

www.UNOS.org

Joanne
 
K

kybert

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fr3ak</b></i>I also know that there is a CF in Australia who is 15 years out...</end quote></div>

they wouldnt happen to live in perth? someone my mum knows has survived for about 10 years or more and shows no sign of stopping.
 
K

kybert

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>fr3ak</b></i>I also know that there is a CF in Australia who is 15 years out...</end quote></div>

they wouldnt happen to live in perth? someone my mum knows has survived for about 10 years or more and shows no sign of stopping.
 
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