Re: Something I just learned......

[Guest guest]

Bruce, I attempted to register when

this registry was first announced. I was told

that they were only taking info from IPF/UPF patients and not from NSIP

patients!

I was very annoyed and asked why ...they said that they had to narrow

the group to those

with specific IPF/UPf patterns in biopsy results! Interesting Huh!

Z fibriotic NSIP/05

Z 65, fibriotic NSIP/05/PA

And

“mild” PH/10/07

No,

NSIP was not self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to Darah and Sara

“I’m

gonna be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

Bruce wrote:

We're a very small percentage of all PF patients so sometimes we

get impressions based on a non-representative group. In doing some

research today, one thing I learned that was new to me is what facility

performs the most lung transplants in the US.

University of Pittsburgh. 118 lung tranplants in 2008.

For those who have been told age is a factor against them, I should

also note that over 36% of those who received transplants at U of Pitt

were 65 or older.

We have several members here who also go to Penn and some who go to

Temple as well. We talk about a National Registry. It should be noted

that the Commonwealth of Pennsylvania designated a $500,000 grant award

in the

2006–2007 budget to the University of Pittsburgh to establish the

Pennsylvania Lung Fibrosis Registry. The participants in the registry

are:

Penn State Medical College, Hershey Medical Center

University of Pennsylvania, Penn Lung Center

Temple University, Temple Lung Center and PA-Scope

Geisinger Center for Health Research and Rural Advocacy and

Pulmonary Group

University of Pittsburgh, Center for Interstitial Lungs

Diseases

Pitt, Penn and Temple perform approximately 15% of all lung transplants

in the US.

[Guest guest]

Bruce,

Have you found any statistics on the mortality rates for any of the lung transplant centers nationwide?

Maggie 64 IPF-3/07-TX

Subject: Something I just learned......To: Breathe-Support Date: Friday, January 1, 2010, 7:50 PM

We're a very small percentage of all PF patients so sometimes we get impressions based on a non-representative group. In doing some research today, one thing I learned that was new to me is what facility performs the most lung transplants in the US. University of Pittsburgh. 118 lung tranplants in 2008. For those who have been told age is a factor against them, I should also note that over 36% of those who received transplants at U of Pitt were 65 or older. We have several members here who also go to Penn and some who go to Temple as well. We talk about a National Registry. It should be noted that the Commonwealth of Pennsylvania designated a $500,000 grant award in the 2006–2007 budget to the University of Pittsburgh to establish the Pennsylvania Lung Fibrosis Registry. The participants in the registry are:

Penn State Medical College, Hershey Medical Center

University of Pennsylvania, Penn Lung Center

Temple University, Temple Lung Center and PA-Scope

Geisinger Center for Health Research and Rural Advocacy and Pulmonary Group

University of Pittsburgh, Center for Interstitial Lungs DiseasesPitt, Penn and Temple perform approximately 15% of all lung transplants in the US.

[Guest guest]

While I see the need to keep the groups of patients separate, I also am

troubled by the fact that in many ways those with ILD's other than IPF

are ignored a bit. For instance, there are very few clinical trials for

NSIP and others. Now, I'm sure the reasoning is that there are already

meds identified that are effective in treating (not curing, but

treating). So, while lumping the various diseases together would create

problems, it certainly would have made sense to me to track them all.

I'm guessing the law as passed was specific as certainly Pitt, Temple

and Penn do have ILD centers dealing with all forms.

I did check the federal act which has been proposed and verify that it

does indicate " and other interstitial lung diseases. " Honestly part of

the problem lies even with those who advocate for us in their use of

terminology. They often fail to choose the words carefully and talk

about PF as a disease rather than a group of diseases. People use IPF

and PF interchangeably too much and use IPF contrary to its medical

definition. I see IPF used to represent PF of undetermined cause and

that is incorrect as it's UIP of undetermined cause. I see doctors who

don't specialize in Interstitial Lung Diseases using the terms

incorrectly too. So at one moment we lump all these diseases and lose

sight of the distinctions. Then we turn around and center on only one to

the neglect of all the others.

> >

> >

> > We're a very small percentage of all PF patients so sometimes we get

> > impressions based on a non-representative group. In doing some

> > research today, one thing I learned that was new to me is what

> > facility performs the most lung transplants in the US.

> >

> > University of Pittsburgh. 118 lung tranplants in 2008.

> >

> > For those who have been told age is a factor against them, I should

> > also note that over 36% of those who received transplants at U of

Pitt

> > were 65 or older.

> >

> > We have several members here who also go to Penn and some who go to

> > Temple as well. We talk about a National Registry. It should be

noted

> > that the Commonwealth of Pennsylvania designated a $500,000 grant

> > award in the 2006--2007 budget to the University of Pittsburgh to

> > establish the Pennsylvania Lung Fibrosis Registry. The participants

in

> > the registry are:

> >

> > * Penn State Medical College, Hershey Medical Center

> > * University of Pennsylvania, Penn Lung Center

> > * Temple University, Temple Lung Center and PA-Scope

> > * Geisinger Center for Health Research and Rural Advocacy and

> > Pulmonary Group**

> > * University of Pittsburgh, Center for Interstitial

Lungs

> > Diseases

> >

> > Pitt, Penn and Temple perform approximately 15% of all lung

> > transplants in the US.

> >

> >

> >

> >

>

[Guest guest]

Maggie

www.unos.org does have information on the one year mortality. I have

found general information on longer mortality and on certain centers but

no chart or table listing multiple facilities. Understand, the absolute

numbers can be misleading too as one center may be doing more difficult

patients than another. The other number I look at is what percentage of

patients are getting transplants within one year of listing or what they

express as turnover.

Here is a simple example of how those rates can be very different. I'll

take two Texas facilities. UTSW had a 92% one year survival last year

but only 48% of their wait listed patients got transplants in one year

and 32% died while waiting for transplants. Meanwhile, UTSA only had an

85% survival rate but they did over 200% of the number of patients on

the waitlist and only 10% died while waiting for a transplant. The two

centers have much different philosophies on matching and UTSA might

accept a match or use an organ that UTSW would not.

>

>

> From: Bruce brucemoreland@...

> Subject: Something I just learned......

> To: Breathe-Support

> Date: Friday, January 1, 2010, 7:50 PM

>

>

>

>

>

>

>

>

>

>

>

>

> We're a very small percentage of all PF patients so sometimes we get

impressions based on a non-representative group. In doing some research

today, one thing I learned that was new to me is what facility performs

the most lung transplants in the US.

>

> University of Pittsburgh. 118 lung tranplants in 2008.

>

> For those who have been told age is a factor against them, I should

also note that over 36% of those who received transplants at U of Pitt

were 65 or older.

>

> We have several members here who also go to Penn and some who go to

Temple as well. We talk about a National Registry. It should be noted

that the Commonwealth of Pennsylvania designated a $500,000 grant award

in the 2006†" 2007 budget to the University of Pittsburgh to

establish the Pennsylvania Lung Fibrosis Registry. The participants in

the registry are:

>

>

> Penn State Medical College, Hershey Medical Center

> University of Pennsylvania, Penn Lung Center

> Temple University, Temple Lung Center and PA-Scope

> Geisinger Center for Health Research and Rural Advocacy and Pulmonary

Group

> University of Pittsburgh, Center for Interstitial Lungs

DiseasesPitt, Penn and Temple perform approximately 15% of all lung

transplants in the US.

>

[Guest guest]

i know that the registry exists but have not hooked up with it yet

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Something I just learned......To: Breathe-Support Date: Friday, January 1, 2010, 10:50 PM

We're a very small percentage of all PF patients so sometimes we get impressions based on a non-representative group. In doing some research today, one thing I learned that was new to me is what facility performs the most lung transplants in the US. University of Pittsburgh. 118 lung tranplants in 2008. For those who have been told age is a factor against them, I should also note that over 36% of those who received transplants at U of Pitt were 65 or older. We have several members here who also go to Penn and some who go to Temple as well. We talk about a National Registry. It should be noted that the Commonwealth of Pennsylvania designated a $500,000 grant award in the 2006–2007 budget to the University of Pittsburgh to establish the Pennsylvania Lung Fibrosis Registry. The participants in the registry are:

Penn State Medical College, Hershey Medical Center

University of Pennsylvania, Penn Lung Center

Temple University, Temple Lung Center and PA-Scope

Geisinger Center for Health Research and Rural Advocacy and Pulmonary Group

University of Pittsburgh, Center for Interstitial Lungs DiseasesPitt, Penn and Temple perform approximately 15% of all lung transplants in the US.

[Guest guest]

mortality rates also vary by how sick the candidates are when they receive the lungs since each person is so different

the healthier the person is in general, the better the survival rate post surgery

i have been told that single transplants tend to do better than double transplants

but it is all relative to multiple factors

if you look at a chart that says 50 people out of 100 do well for 10 years, at one place and the stat is different someplace else, you also have to look at what else is going on with that recipient

most people go in for nose jobs and have no problem, yet i knew a few people who died right after the nose job -- reaction to anesthesia in some cases -- the last one I knew was a 25 year old-- not sure what caused his problem after surgery

i even knew a 6 year old who went in for a T & A, had a reaction to the anesthesia, they never even got to do the T & A,

Bruce, my ex, said that there was no way to predict or test for reactions to anesthesia at that time, wonder if it is still true

just like some people have reactions to meds, we are all different-- wish i could take imuran, but when the dosage was increased, i had a reaction to it

the list of meds that i have had bad reactions to has grown to about 4 or 5

i had an acquaintance at rehab, she had a single lung, did very well, was an inspiration to anyone contemplating transplant, then..........cancer cropped up someplace (I don't know where), the cancer killed her within a year-- the immunos that prevent organ rejection do the opposite for cancer -- about 3 or 4 years after the transplant

her husband said that if she had to do it all over again, she would, because the transplant gave her 3 good years of quality life

i am not sure what the relationship is with the immunos and cancer cells, do they cause the cancer or do they interfere with the treatment of the cancer

that's why anyone with cancer in the body is usually not a candidate for organ transplant

hope this makes sense

do your research and talk to your transplant team

yet i have met people who had transplants 5, 10, 15 years ago

that's why i like to go to the transplant support group and the holiday party, that's where you meet people with longevity after transplant

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Something I just learned......To: Breathe-Support Date: Saturday, January 2, 2010, 9:50 AM

Bruce,

Have you found any statistics on the mortality rates for any of the lung transplant centers nationwide?

Maggie 64 IPF-3/07-TX

From: Bruce <brucemoreland@ gmail.com>Subject: Something I just learned..... .To: Breathe-Support@ yahoogroups. comDate: Friday, January 1, 2010, 7:50 PM

We're a very small percentage of all PF patients so sometimes we get impressions based on a non-representative group. In doing some research today, one thing I learned that was new to me is what facility performs the most lung transplants in the US. University of Pittsburgh. 118 lung tranplants in 2008. For those who have been told age is a factor against them, I should also note that over 36% of those who received transplants at U of Pitt were 65 or older. We have several members here who also go to Penn and some who go to Temple as well. We talk about a National Registry. It should be noted that the Commonwealth of Pennsylvania designated a $500,000 grant award in the 2006–2007 budget to the University of Pittsburgh to establish the Pennsylvania Lung Fibrosis Registry. The participants in the registry are:

Penn State Medical College, Hershey Medical Center

University of Pennsylvania, Penn Lung Center

Temple University, Temple Lung Center and PA-Scope

Geisinger Center for Health Research and Rural Advocacy and Pulmonary Group

University of Pittsburgh, Center for Interstitial Lungs DiseasesPitt, Penn and Temple perform approximately 15% of all lung transplants in the US.

[Guest guest]

Joyce....thank you for all the information.....I am so new to all of this it just seems so overwhelming at times......there is just so much to digest!!

Right now my biggest problem is that the very second I wake up in the morning I remember I have this disease and it scares me all over again. When did you all stop feeling like that each and every morning upon waking up?

Patti Indianapolis IPF 2007

[Guest guest]

Patti,I know how you feel. To: Breathe-Support Sent: Sat, January 2, 2010 12:35:34 PMSubject: Re: Something I just learned......

Joyce....thank you for all the information. ....I am so new to all of this it just seems so overwhelming at times......there is just so much to digest!!

Right now my biggest problem is that the very second I wake up in the morning I remember I have this disease and it scares me all over again. When did you all stop feeling like that each and every morning upon waking up?

Patti Indianapolis IPF 2007

[Guest guest]

Patti,It is always in the back of my mind, especially when I cough, but I can't let it get to me. I just keep on keeping on, and do what I can. Live each day to the fullest.Kathy ILD 3/08 Type 2 diabetes forever agoSubject: Re: Something I just learned......To: Breathe-Support Date: Saturday, January 2, 2010, 10:30 AM

Patti,I know how you feel. From: Patti <napa73 (AT) comcast (DOT) net>To: Breathe-Support@ yahoogroups. comSent: Sat, January 2, 2010 12:35:34 PMSubject: Re: Something I just learned..... .

Joyce....thank you for all the information. ....I am so new to all of this it just seems so overwhelming at times......there is just so much to digest!!

Right now my biggest problem is that the very second I wake up in the morning I remember I have this disease and it scares me all over again. When did you all stop feeling like that each and every morning upon waking up?

Patti Indianapolis IPF 2007

[Guest guest]

Patti:

It gets easier, takes awhile. I still think about it but not as much. I don't know if it is acceptance or denial on my part. I do paray a lot. PF 01/05 diabetis forever, pagents disease 1975 68yo Atlanta.

To: Breathe-Support Sent: Sat, January 2, 2010 12:35:34 PMSubject: Re: Something I just learned......

Joyce....thank you for all the information. ....I am so new to all of this it just seems so overwhelming at times......there is just so much to digest!!

Right now my biggest problem is that the very second I wake up in the morning I remember I have this disease and it scares me all over again. When did you all stop feeling like that each and every morning upon waking up?

Patti Indianapolis IPF 2007

[Guest guest]

Patti,

It does become easier (but still not easy) to deal with having a terminal

illness. But if you are anything like me, you will go through ups and downs and

be able to not think too much about it some days and others just being totally

depressed about it.

I try to focus my attention on helping others as we usually will feel better

helping someone else. I try everyday to smile at others, crack a joke with a

store clerk or give a wave to some one who let me in traffic... because it makes

ME feel better to see another person smile and know it was because of something

I did.

Frost in a poem talks about how after stopping his ride home in a sleigh

on a snowy winter's eve to enjoy the stillness and quiet of the night... said he

had to continue his trip because " I have promises to keep and miles to go before

I sleep...miles to go before I sleep. " To me, evry person that I can positively

effect before I die is a " mile " and I know there are plenty of " miles to go

before I sleep " .

I get depressed about my having IPF, but I am comforted by the kids I can help

and the families I can help in my job as a School Social Worker and parent

trainer. I have about 30 " miles " on my caseload at school and many others in my

parenting classes and I feel great when some one tells me that what I said or

did helped them. That helps me keep going despite my exhaustion and sadness.

I am not saying all this to " apply for sainthood " but to encourge you to do what

you can to help others even it is to just smile at them and you will be

surprised to see how much better you feel. Saying all this, I will also say

that this group is the place to come and tell us that you are depressed and have

a hard time focusing on anything else because we can relate in so many ways. We

have been there and will be again as we all battle this horrendous disease.

Jim

IPF and Sarcoidosis October 2000

Pulmanary Hypertension 2007

>

> Patti:

> It gets easier, takes awhile.   I still think about it but not as much.  I

don't know if it is acceptance or denial on my part. I do paray a lot.

>  PF 01/05 diabetis forever, pagents disease 1975 68yo Atlanta.

>

>

>

>

> ________________________________

>

> To: Breathe-Support

> Sent: Sat, January 2, 2010 12:35:34 PM

> Subject: Re: Something I just learned......

>

>  

> Joyce....thank you for all the information. ....I am so new to all of this it

just seems so overwhelming at times......there is just so much to digest!!

>

> Right now my biggest problem is that the very second I wake up in the morning

I remember I have this disease and it scares me all over again.  When did you

all stop feeling like that each and every morning upon waking up?

>  

>  

> Patti  Indianapolis  IPF 2007

>

[Guest guest]

Kathy, and and all of you too,

Thank you for the kind words of support.....can't believe how much this group means to me after only one month!

Patti Indianapolis IPF 2007

[Guest guest]

Jim,

You have such a great attitude and how wonderful that you are using your life to help students and their families.

I shall make my New Years Resolution to try as often as I can to make even just a small difference in someone's life, even if only with a smile.

Thank you!

Patti Indianapolis IPF 2007