The Bell Curve

[tarheel]

As you can see by the data I have provided below, I am probably on the road to transplant sometime in the future. My parents are really blaming themselves because they think they have put me in this situation. I disagree, but can't prove it. However, I want to know about how you made your transplant journey- and did it start with the center you chose as a kid?
I recently read the article from 2003 about a surgeon who, studying the bell curve visited both Cincinatti and Minniapolis children's centers. (for those of you who have not read it, it was in the New Yorker, I believe, and I read it in the complete book called "Better" - A surgeon's notes on performance) Anyways, I told my mom about this and she revealed that she regretted not taking me to Minneapolis. She knew it was the best, as did some others. In the interest of full disclosure hospitals have recently revealed their point on this curve of performance of patients. (I'm going to spell it wrong like five times)She now regrets not moving to minneapolis when I was first diagnosed. What I am interested in is not why is this center the best, but can you get to the same point by a different route (If you know what I mean)
So, I am collecting info to "reinvent" the bell curve- Please, if you have time and are willing to disclose the following information, it would be extremely helpful. If you don't want public answers to be known, PM me, or if you don't want to answer some of the questions, even partial data is helpful.

1. Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)
Ex- AI DuPont Children's (or, no)
2. When were you born?
Ex- 10/23/1992
3. What are your mutations? (Or, scaled down, do you have DF508?)
Ex.- I only know the one DF508 mutation, not the second
4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? (Well, just the first one really I guess, after transplant the data is slightly skewed I would suppose)
Ex- 45/45 (I just left so...)

Any additional info that you feel helps complete the picture would be great too.
Now that you know about me I would love your help in answering this question that is weighing so heavily on my mind. Thanks so much.

 

[tarheel]

As you can see by the data I have provided below, I am probably on the road to transplant sometime in the future. My parents are really blaming themselves because they think they have put me in this situation. I disagree, but can't prove it. However, I want to know about how you made your transplant journey- and did it start with the center you chose as a kid?
I recently read the article from 2003 about a surgeon who, studying the bell curve visited both Cincinatti and Minniapolis children's centers. (for those of you who have not read it, it was in the New Yorker, I believe, and I read it in the complete book called "Better" - A surgeon's notes on performance) Anyways, I told my mom about this and she revealed that she regretted not taking me to Minneapolis. She knew it was the best, as did some others. In the interest of full disclosure hospitals have recently revealed their point on this curve of performance of patients. (I'm going to spell it wrong like five times)She now regrets not moving to minneapolis when I was first diagnosed. What I am interested in is not why is this center the best, but can you get to the same point by a different route (If you know what I mean)
So, I am collecting info to "reinvent" the bell curve- Please, if you have time and are willing to disclose the following information, it would be extremely helpful. If you don't want public answers to be known, PM me, or if you don't want to answer some of the questions, even partial data is helpful.

1. Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)
Ex- AI DuPont Children's (or, no)
2. When were you born?
Ex- 10/23/1992
3. What are your mutations? (Or, scaled down, do you have DF508?)
Ex.- I only know the one DF508 mutation, not the second
4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? (Well, just the first one really I guess, after transplant the data is slightly skewed I would suppose)
Ex- 45/45 (I just left so...)

Any additional info that you feel helps complete the picture would be great too.
Now that you know about me I would love your help in answering this question that is weighing so heavily on my mind. Thanks so much.

 

[tarheel]

As you can see by the data I have provided below, I am probably on the road to transplant sometime in the future. My parents are really blaming themselves because they think they have put me in this situation. I disagree, but can't prove it. However, I want to know about how you made your transplant journey- and did it start with the center you chose as a kid?
<br /> I recently read the article from 2003 about a surgeon who, studying the bell curve visited both Cincinatti and Minniapolis children's centers. (for those of you who have not read it, it was in the New Yorker, I believe, and I read it in the complete book called "Better" - A surgeon's notes on performance) Anyways, I told my mom about this and she revealed that she regretted not taking me to Minneapolis. She knew it was the best, as did some others. In the interest of full disclosure hospitals have recently revealed their point on this curve of performance of patients. (I'm going to spell it wrong like five times)She now regrets not moving to minneapolis when I was first diagnosed. What I am interested in is not why is this center the best, but can you get to the same point by a different route (If you know what I mean)
<br />So, I am collecting info to "reinvent" the bell curve- Please, if you have time and are willing to disclose the following information, it would be extremely helpful. If you don't want public answers to be known, PM me, or if you don't want to answer some of the questions, even partial data is helpful.
<br />
<br />1. Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)
<br />Ex- AI DuPont Children's (or, no)
<br />2. When were you born?
<br />Ex- 10/23/1992
<br />3. What are your mutations? (Or, scaled down, do you have DF508?)
<br />Ex.- I only know the one DF508 mutation, not the second
<br />4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? (Well, just the first one really I guess, after transplant the data is slightly skewed I would suppose)
<br />Ex- 45/45 (I just left so...)
<br />
<br />Any additional info that you feel helps complete the picture would be great too.
<br />Now that you know about me I would love your help in answering this question that is weighing so heavily on my mind. Thanks so much.

 

[jpburkeiii]

1. Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)

Johns Hopkins

2. When were you born?

6/1960

3. What are your mutations?

DF508

4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? (Well, just the first one really I guess, after transplant the data is slightly skewed I would suppose)

Johns Hopkins has a child and adult program so the change from one to the other was seeemless.


Transplanted
1999 currently 115% of predicted for both fev and fev1

 

[jpburkeiii]

1. Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)

Johns Hopkins

2. When were you born?

6/1960

3. What are your mutations?

DF508

4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? (Well, just the first one really I guess, after transplant the data is slightly skewed I would suppose)

Johns Hopkins has a child and adult program so the change from one to the other was seeemless.


Transplanted
1999 currently 115% of predicted for both fev and fev1

 

[jpburkeiii]

1. Where did you primarily recieve your first 18 years of CF care? (Or a scaled down version- did you go to Minneapolis?)
<br />
<br />Johns Hopkins
<br />
<br />2. When were you born?
<br />
<br />6/1960
<br />
<br />3. What are your mutations?
<br />
<br />DF508
<br />
<br />4. What was your FEV1 %pred when you left your children's center for adult care? What is it now? (Well, just the first one really I guess, after transplant the data is slightly skewed I would suppose)
<br />
<br />Johns Hopkins has a child and adult program so the change from one to the other was seeemless.
<br />
<br />
<br />Transplanted
<br />1999 currently 115% of predicted for both fev and fev1

 

[coltsfan715]

1. Where did you primarily receive your first 18 years of CF Care?
Baptist Medical Center and Nemour's Childrens Clinic (the Baptist CF Dept converted to Nemours) Jacksonville FL

2. When were you born?
7-15-1982

3. What are your mutations?
Double DF508

4. What was your FEV1% pred when you left your children's center for adult care? What is it now?
when I left the children's clinic at 21 was roughly 50%. By 24 I was at 30% and pursuing transplant. I was transplant by age 25 - my donor was 28. Now 3 yrs post transplant my FEV1 % pred is 91%

Lindsey

I personally feel my adult care was below par and that is what contributed to my decline - the adult doc took a med regimine that had been working for me for years and changed it drastically and I declined very quickly after that.

 

[coltsfan715]

1. Where did you primarily receive your first 18 years of CF Care?
Baptist Medical Center and Nemour's Childrens Clinic (the Baptist CF Dept converted to Nemours) Jacksonville FL

2. When were you born?
7-15-1982

3. What are your mutations?
Double DF508

4. What was your FEV1% pred when you left your children's center for adult care? What is it now?
when I left the children's clinic at 21 was roughly 50%. By 24 I was at 30% and pursuing transplant. I was transplant by age 25 - my donor was 28. Now 3 yrs post transplant my FEV1 % pred is 91%

Lindsey

I personally feel my adult care was below par and that is what contributed to my decline - the adult doc took a med regimine that had been working for me for years and changed it drastically and I declined very quickly after that.

 

[coltsfan715]

1. Where did you primarily receive your first 18 years of CF Care?
<br /> Baptist Medical Center and Nemour's Childrens Clinic (the Baptist CF Dept converted to Nemours) Jacksonville FL
<br />
<br />2. When were you born?
<br /> 7-15-1982
<br />
<br />3. What are your mutations?
<br /> Double DF508
<br />
<br />4. What was your FEV1% pred when you left your children's center for adult care? What is it now?
<br /> when I left the children's clinic at 21 was roughly 50%. By 24 I was at 30% and pursuing transplant. I was transplant by age 25 - my donor was 28. Now 3 yrs post transplant my FEV1 % pred is 91%
<br />
<br />Lindsey
<br />
<br />I personally feel my adult care was below par and that is what contributed to my decline - the adult doc took a med regimine that had been working for me for years and changed it drastically and I declined very quickly after that.

 

[tarheel]

Yikes. I just realized something from both of these posts. Besides the fact that the numbers match much closer to mine, I received 3 yrs of care at Johns Hopkins and the other 7 have been from a Nemours clinic in DE- however, they streamline their facilities, so I'd think the care was about the same? I am not scared that this is the road I'm taking, and what will be will be, but still.... am I allowed to say yikes about this?

Yet- if I can make a broad assumption based on an individual's participation in this little data search, no one who has posted (knowing many of them from other forums) is really non compliant at all. And I don't believe anyone here who has had a transplant is either. Numbers can make so little sense sometimes.

 

[tarheel]

Yikes. I just realized something from both of these posts. Besides the fact that the numbers match much closer to mine, I received 3 yrs of care at Johns Hopkins and the other 7 have been from a Nemours clinic in DE- however, they streamline their facilities, so I'd think the care was about the same? I am not scared that this is the road I'm taking, and what will be will be, but still.... am I allowed to say yikes about this?

Yet- if I can make a broad assumption based on an individual's participation in this little data search, no one who has posted (knowing many of them from other forums) is really non compliant at all. And I don't believe anyone here who has had a transplant is either. Numbers can make so little sense sometimes.

 

[tarheel]

Yikes. I just realized something from both of these posts. Besides the fact that the numbers match much closer to mine, I received 3 yrs of care at Johns Hopkins and the other 7 have been from a Nemours clinic in DE- however, they streamline their facilities, so I'd think the care was about the same? I am not scared that this is the road I'm taking, and what will be will be, but still.... am I allowed to say yikes about this?
<br />
<br />Yet- if I can make a broad assumption based on an individual's participation in this little data search, no one who has posted (knowing many of them from other forums) is really non compliant at all. And I don't believe anyone here who has had a transplant is either. Numbers can make so little sense sometimes.

 

[shinkdew]

1. UConn/CT Children's Hospital

2. 6/1977

3. DF508

4. It was about 80% when I left pediatric clinic. I switched hospitals when I switched to adult (MGH-Boston). It's now 30% and been as low as 23%.

 

[shinkdew]

1. UConn/CT Children's Hospital

2. 6/1977

3. DF508

4. It was about 80% when I left pediatric clinic. I switched hospitals when I switched to adult (MGH-Boston). It's now 30% and been as low as 23%.

 

[shinkdew]

1. UConn/CT Children's Hospital
<br />
<br />2. 6/1977
<br />
<br />3. DF508
<br />
<br />4. It was about 80% when I left pediatric clinic. I switched hospitals when I switched to adult (MGH-Boston). It's now 30% and been as low as 23%.

 

[coltsfan715]

Just wanted to say I wouldn't so much be concerned about the care at Nemours - they did great with me and had me stable for over a decade I was between 55-50% range. I had a hard time switching to adult care because I didn't go to a CF center I went to a pulmonologist that treated a lot of CF patients and I personally feel his methods were why I required a transplant so soon after switching to adults. If you choose your adult care wisely I am sure you will be fine for some time.

Lindsey

 

[coltsfan715]

Just wanted to say I wouldn't so much be concerned about the care at Nemours - they did great with me and had me stable for over a decade I was between 55-50% range. I had a hard time switching to adult care because I didn't go to a CF center I went to a pulmonologist that treated a lot of CF patients and I personally feel his methods were why I required a transplant so soon after switching to adults. If you choose your adult care wisely I am sure you will be fine for some time.

Lindsey

 

[coltsfan715]

Just wanted to say I wouldn't so much be concerned about the care at Nemours - they did great with me and had me stable for over a decade I was between 55-50% range. I had a hard time switching to adult care because I didn't go to a CF center I went to a pulmonologist that treated a lot of CF patients and I personally feel his methods were why I required a transplant so soon after switching to adults. If you choose your adult care wisely I am sure you will be fine for some time.
<br />
<br />Lindsey

 

[tarheel]

thanks lindsey. Hopefully now that my CFRD is under control my lung function will remain where it's at.

 

[tarheel]

thanks lindsey. Hopefully now that my CFRD is under control my lung function will remain where it's at.