Interesting Initial Trip to Transplant Center

[Guest guest]

I research and gather information and make those decisions I need to in advance. I also pursue all options. But, I'm not attempting to make decisions before their time, just attempting to be prepared. So, I can't say today whether I'd choose to have a transplant or not. But, I did choose to visit the transplant center at UTSW and gather information and start toward finding out if I'd be a candidate or not.

None of what follows is intended to influence anyone else, but just to share my experience. I felt it was a worthwhile and informative afternoon.

I was given a lot of information, both verbal and written. Some was an update on the lung allocation system. I didn't know that it actually is based on the one that existed for liver transplants. Sometime back a change was made that is quite favorable for those of us with PF. Prior to that change, getting in line was very important because you got a place and maintained it over new arrivals. Now, you get a score (yes a number) which determines your place on the waiting list and how long you've been waiting has no impact. This means that PF patients get a preference they didn't because being close to death with no other options as they deteriorate pushes them up over COPD or other patients who may have been listed longer.

I was aware of www.unos.org but he gave me a new site to visit which is interesting, www.transplantliving.org .

Why am I doing this now, so far in advance? Well, because I'm healthy enough to go talk and to explore and to plan just in case. Also, I can find out early if there are factors that would exclude me. Some factors would be absolute and others would be relative. Finding some initial information in this regard would not be that invasive or time consuming. Obviously down the road a real transplant evaluation is. However, they don't recommend getting an evaluation until you're within one year of probable death. Their belief is that you want to get all you can out of your existing lungs before trying new ones. You don't want to sacrifice what can be a good life for a premature transplant. Also, if you move too soon you will just find yourself repeating so many tests as the time will require.

UTSW does not tell you to stay within two hours upon listing but only when you are in the top four or five candidates by score. Then based on match you could be called. For instance, if you're a 6-4" man and number four and they get organs from a 6-4" man and all those ahead are short women, then you might be called. Post transplant they require you to be within one hour of the center.

They require you to have someone with you 24/7 for 4 to 6 weeks after the transplant, longer if any complications. A couple of key reasons, in addition to being watched after, are (1) for transportation and (2) for medications. They have found many patients post-transplant, because they are on such high levels of prednisone, mismanage their medications. This 24/7 care can be anyone-family, friends, or paid. However, medicare and most insurance does not cover any of it as it is considered custodial care. Also, they do not allow an intermediate stay in a nursing home as an option due to the exposure to other people and other illnesses and germs.

Of course each insurer is different but I did also meet with the financial and social directors today and here is what I found out on Medicare. Medicare does cover 80% of the costs of the transplant and treatment and, with a medicare supplement, then 100% are covered. Of course the medications required after would fall under Medicare Part D and would quickly send you into and through the black hole. So typically the prescription cost could be in the $6000 per year range. Now there are sources of assistance, including medicaid, the pharmaceutical companies, and other organizations.

I had an interesting discussion on the topic of organ selection and the issue of more conservative hospitals doing fewer transplants but achieving higher success rates versus more aggressive hospitals transplanting a larger percentage but having slightly lower success rates. We agreed it was a complex issue, but he did bring up that insurance plays a role in it, since they just look at success rates. Although hospitals have general practices, the ultimate decision is one of the surgeon and pulmonologist on the case.

Note UTSW is where Gwynne had all her testing done and was listed before she double listed with UTSA, where she ended up having the transplant.

UTSW's current survival rates are around 92-93% one year and around 68% five years. The one year number means they typically have only one first year death per year.

One thing on which he did confirm my beliefs is that the more transplants a hospital is doing the better success rates you can expect them to have. It makes sense, but he indicated there was real data supporting that theory, although he didn't provide it.

They also gave me an excellent book on transplants in general, "Partnering with Your Transplant Team." This is published by the US Dept of Health and Human Services and prepared by UNOS. It is available here:

http://unos.org/resources/brochures.asp

There is some very detailed information available here:

http://unos.org/resources/policyBrochures.asp

It includes information on the Lung Allocation System.

Obviously, many of you know far more about this topic than I do and are very far down the line. However, for those who aren't there yet, like me, you might find a referral for an initial visit to be worth the time.

[Guest guest]

Hi Bruce, I have danced around your post since you sent it. I wanted to read it carefully and since I was focused on getting all the old posts out of my inbox, I waited until last. My inbox is totally cleaned out! Yaaaaah! This was very interesting. It really sounds wonderful for transplants and Gwynne. How exciting. I don't think Don would be anywhere near the time for a transplant and by the time he is he will be far too old. But it is interesting to read all of this. The director of the Wellness Center called today and we have an appointment on Tuesday and we can get him in to rehab right away I think. (The beauties of living in a small community). She remembered him from cardiac rehab. Modern medicine is wonderful isn't it? If only there could be a cure for

fibrosis. I'm gonna hit send and delete and then my inbox will be really empty. Have a great day tomorrow. I just wanted you to know I enjoy all your informative posts -----and then there is the teasing between you and the rest of the crew. So fun and I must say addictive. Hummmm! I wonder if there is withdrawl plan for the board! k IllinoisBruce Moreland wrote: I research and gather information and make

those decisions I need to in advance. I also pursue all options. But, I'm not attempting to make decisions before their time, just attempting to be prepared. So, I can't say today whether I'd choose to have a transplant or not. But, I did choose to visit the transplant center at UTSW and gather information and start toward finding out if I'd be a candidate or not. None of what follows is intended to influence anyone else, but just to share my experience. I felt it was a worthwhile and informative afternoon. I was given a lot of information, both verbal and written. Some was an update on the lung allocation system. I didn't know that it actually is based on the one that existed for liver transplants. Sometime back a change was made that is quite favorable for those of us with PF. Prior to that change, getting in line was very important because you got a place and maintained it over new arrivals. Now, you get a score (yes a number) which

determines your place on the waiting list and how long you've been waiting has no impact. This means that PF patients get a preference they didn't because being close to death with no other options as they deteriorate pushes them up over COPD or other patients who may have been listed longer. I was aware of www.unos.org but he gave me a new site to visit which is interesting, www.transplantliving.org . Why am I doing this now, so far in advance? Well, because I'm healthy enough to go talk and to explore and to plan just in case. Also, I can find out early if there are factors that would exclude me. Some factors would be absolute and others would be relative. Finding some initial information in this regard would not be that invasive or time consuming. Obviously down the road a real transplant evaluation is. However, they don't recommend getting an evaluation until

you're within one year of probable death. Their belief is that you want to get all you can out of your existing lungs before trying new ones. You don't want to sacrifice what can be a good life for a premature transplant. Also, if you move too soon you will just find yourself repeating so many tests as the time will require. UTSW does not tell you to stay within two hours upon listing but only when you are in the top four or five candidates by score. Then based on match you could be called. For instance, if you're a 6-4" man and number four and they get organs from a 6-4" man and all those ahead are short women, then you might be called. Post transplant they require you to be within one hour of the center. They require you to have someone with you 24/7 for 4 to 6 weeks after the transplant, longer if any complications. A couple of key reasons, in addition to being watched after, are (1) for transportation and (2) for medications. They have found

many patients post-transplant, because they are on such high levels of prednisone, mismanage their medications. This 24/7 care can be anyone-family, friends, or paid. However, medicare and most insurance does not cover any of it as it is considered custodial care. Also, they do not allow an intermediate stay in a nursing home as an option due to the exposure to other people and other illnesses and germs. Of course each insurer is different but I did also meet with the financial and social directors today and here is what I found out on Medicare. Medicare does cover 80% of the costs of the transplant and treatment and, with a medicare supplement, then 100% are covered. Of course the medications required after would fall under Medicare Part D and would quickly send you into and through the black hole. So typically the prescription cost could be in the $6000 per year range. Now there are sources of assistance, including medicaid, the pharmaceutical

companies, and other organizations. I had an interesting discussion on the topic of organ selection and the issue of more conservative hospitals doing fewer transplants but achieving higher success rates versus more aggressive hospitals transplanting a larger percentage but having slightly lower success rates. We agreed it was a complex issue, but he did bring up that insurance plays a role in it, since they just look at success rates. Although hospitals have general practices, the ultimate decision is one of the surgeon and pulmonologist on the case. Note UTSW is where Gwynne had all her testing done and was listed before she double listed with UTSA, where she ended up having the transplant. UTSW's current survival rates are around 92-93% one year and around 68% five years. The one year number means they typically have only one first year death per year. One thing on which he did confirm my beliefs is that the more

transplants a hospital is doing the better success rates you can expect them to have. It makes sense, but he indicated there was real data supporting that theory, although he didn't provide it. They also gave me an excellent book on transplants in general, "Partnering with Your Transplant Team." This is published by the US Dept of Health and Human Services and prepared by UNOS. It is available here: http://unos.org/resources/brochures.asp There is some very detailed information available here: http://unos.org/resources/policyBrochures.asp It includes information on the Lung Allocation System. Obviously, many of you know far more about this topic than I do and are very far down the line. However, for those who aren't there yet, like me, you might find a

referral for an initial visit to be worth the time. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

K. ... Good morning!

If you stumble across a plan to break "addiction" to the board, be sure and post it!

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Interesting Initial Trip to Transplant Center

Hi Bruce,

I have danced around your post since you sent it. I wanted to read it carefully and since I was focused on getting all the old posts out of my inbox, I waited until last. My inbox is totally cleaned out! Yaaaaah!

This was very interesting. It really sounds wonderful for transplants and Gwynne. How exciting. I don't think Don would be anywhere near the time for a transplant and by the time he is he will be far too old. But it is interesting to read all of this.

The director of the Wellness Center called today and we have an appointment on Tuesday and we can get him in to rehab right away I think. (The beauties of living in a small community). She remembered him from cardiac rehab.

Modern medicine is wonderful isn't it? If only there could be a cure for fibrosis.

I'm gonna hit send and delete and then my inbox will be really empty. Have a great day tomorrow. I just wanted you to know I enjoy all your informative posts -----and then there is the teasing between you and the rest of the crew. So fun and I must say addictive. Hummmm! I wonder if there is withdrawl plan for the board!

k

IllinoisBruce Moreland <brucemorelandgmail> wrote:

I research and gather information and make those decisions I need to in advance. I also pursue all options. But, I'm not attempting to make decisions before their time, just attempting to be prepared. So, I can't say today whether I'd choose to have a transplant or not. But, I did choose to visit the transplant center at UTSW and gather information and start toward finding out if I'd be a candidate or not.

None of what follows is intended to influence anyone else, but just to share my experience. I felt it was a worthwhile and informative afternoon.

I was given a lot of information, both verbal and written. Some was an update on the lung allocation system. I didn't know that it actually is based on the one that existed for liver transplants. Sometime back a change was made that is quite favorable for those of us with PF. Prior to that change, getting in line was very important because you got a place and maintained it over new arrivals. Now, you get a score (yes a number) which determines your place on the waiting list and how long you've been waiting has no impact. This means that PF patients get a preference they didn't because being close to death with no other options as they deteriorate pushes them up over COPD or other patients who may have been listed longer.

I was aware of www.unos.org but he gave me a new site to visit which is interesting, www.transplantliving.org .

Why am I doing this now, so far in advance? Well, because I'm healthy enough to go talk and to explore and to plan just in case. Also, I can find out early if there are factors that would exclude me. Some factors would be absolute and others would be relative. Finding some initial information in this regard would not be that invasive or time consuming. Obviously down the road a real transplant evaluation is. However, they don't recommend getting an evaluation until you're within one year of probable death. Their belief is that you want to get all you can out of your existing lungs before trying new ones. You don't want to sacrifice what can be a good life for a premature transplant. Also, if you move too soon you will just find yourself repeating so many tests as the time will require.

UTSW does not tell you to stay within two hours upon listing but only when you are in the top four or five candidates by score. Then based on match you could be called. For instance, if you're a 6-4" man and number four and they get organs from a 6-4" man and all those ahead are short women, then you might be called. Post transplant they require you to be within one hour of the center.

They require you to have someone with you 24/7 for 4 to 6 weeks after the transplant, longer if any complications. A couple of key reasons, in addition to being watched after, are (1) for transportation and (2) for medications. They have found many patients post-transplant, because they are on such high levels of prednisone, mismanage their medications. This 24/7 care can be anyone-family, friends, or paid. However, medicare and most insurance does not cover any of it as it is considered custodial care. Also, they do not allow an intermediate stay in a nursing home as an option due to the exposure to other people and other illnesses and germs.

Of course each insurer is different but I did also meet with the financial and social directors today and here is what I found out on Medicare. Medicare does cover 80% of the costs of the transplant and treatment and, with a medicare supplement, then 100% are covered. Of course the medications required after would fall under Medicare Part D and would quickly send you into and through the black hole. So typically the prescription cost could be in the $6000 per year range. Now there are sources of assistance, including medicaid, the pharmaceutical companies, and other organizations.

I had an interesting discussion on the topic of organ selection and the issue of more conservative hospitals doing fewer transplants but achieving higher success rates versus more aggressive hospitals transplanting a larger percentage but having slightly lower success rates. We agreed it was a complex issue, but he did bring up that insurance plays a role in it, since they just look at success rates. Although hospitals have general practices, the ultimate decision is one of the surgeon and pulmonologist on the case.

Note UTSW is where Gwynne had all her testing done and was listed before she double listed with UTSA, where she ended up having the transplant.

UTSW's current survival rates are around 92-93% one year and around 68% five years. The one year number means they typically have only one first year death per year.

One thing on which he did confirm my beliefs is that the more transplants a hospital is doing the better success rates you can expect them to have. It makes sense, but he indicated there was real data supporting that theory, although he didn't provide it.

They also gave me an excellent book on transplants in general, "Partnering with Your Transplant Team." This is published by the US Dept of Health and Human Services and prepared by UNOS. It is available here:

http://unos.org/resources/brochures.asp

There is some very detailed information available here:

http://unos.org/resources/policyBrochures.asp

It includes information on the Lung Allocation System.

Obviously, many of you know far more about this topic than I do and are very far down the line. However, for those who aren't there yet, like me, you might find a referral for an initial visit to be worth the time.

K

Central Il

Hubby ipf- 2006

As for me and my house, we will serve the Lord

14

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Sher/ K

You wouldn't dare consider such a thing, Sher. Then what would happen to

those of us addicted to you?

Now just take time out for your project. If the weather is decent get

out if only for a few moments and no real reason to do so. And,

exercise. Then come spend time with us here. Oh my, you're doing so

well.

I read what you said yesterday about this helping fill the void left

when your career was pulled away from you. Well, I wasn't in the same

field, although wish I had been, but I think it fills that void for many

of us. One thing work is in addition to anything else is that its our

place to go and spend time and socialize. So we do that here but not the

same hours we worked and flexible and then we still do the other things

we need to.

> I research and gather information and make those decisions I need to

in advance. I also pursue all options. But, I'm not attempting to make

decisions before their time, just attempting to be prepared. So, I can't

say today whether I'd choose to have a transplant or not. But, I did

choose to visit the transplant center at UTSW and gather information and

start toward finding out if I'd be a candidate or not.

> None of what follows is intended to influence anyone else, but just to

share my experience. I felt it was a worthwhile and informative

afternoon.

> I was given a lot of information, both verbal and written. Some was an

update on the lung allocation system. I didn't know that it actually is

based on the one that existed for liver transplants. Sometime back a

change was made that is quite favorable for those of us with PF. Prior

to that change, getting in line was very important because you got a

place and maintained it over new arrivals. Now, you get a score (yes a

number) which determines your place on the waiting list and how long

you've been waiting has no impact. This means that PF patients get a

preference they didn't because being close to death with no other

options as they deteriorate pushes them up over COPD or other patients

who may have been listed longer.

> I was aware of www.unos.org but he gave me a new site to visit which

is interesting, www.transplantliving.org .

> Why am I doing this now, so far in advance? Well, because I'm healthy

enough to go talk and to explore and to plan just in case. Also, I can

find out early if there are factors that would exclude me. Some factors

would be absolute and others would be relative. Finding some initial

information in this regard would not be that invasive or time consuming.

Obviously down the road a real transplant evaluation is. However, they

don't recommend getting an evaluation until you're within one year of

probable death. Their belief is that you want to get all you can out of

your existing lungs before trying new ones. You don't want to sacrifice

what can be a good life for a premature transplant. Also, if you move

too soon you will just find yourself repeating so many tests as the time

will require.

> UTSW does not tell you to stay within two hours upon listing but only

when you are in the top four or five candidates by score. Then based on

match you could be called. For instance, if you're a 6-4 " man and number

four and they get organs from a 6-4 " man and all those ahead are short

women, then you might be called. Post transplant they require you to be

within one hour of the center.

> They require you to have someone with you 24/7 for 4 to 6 weeks after

the transplant, longer if any complications. A couple of key reasons, in

addition to being watched after, are (1) for transportation and (2) for

medications. They have found many patients post-transplant, because they

are on such high levels of prednisone, mismanage their medications. This

24/7 care can be anyone-family, friends, or paid. However, medicare and

most insurance does not cover any of it as it is considered custodial

care. Also, they do not allow an intermediate stay in a nursing home as

an option due to the exposure to other people and other illnesses and

germs.

> Of course each insurer is different but I did also meet with the

financial and social directors today and here is what I found out on

Medicare. Medicare does cover 80% of the costs of the transplant and

treatment and, with a medicare supplement, then 100% are covered. Of

course the medications required after would fall under Medicare Part D

and would quickly send you into and through the black hole. So typically

the prescription cost could be in the $6000 per year range. Now there

are sources of assistance, including medicaid, the pharmaceutical

companies, and other organizations.

> I had an interesting discussion on the topic of organ selection and

the issue of more conservative hospitals doing fewer transplants but

achieving higher success rates versus more aggressive hospitals

transplanting a larger percentage but having slightly lower success

rates. We agreed it was a complex issue, but he did bring up that

insurance plays a role in it, since they just look at success rates.

Although hospitals have general practices, the ultimate decision is one

of the surgeon and pulmonologist on the case.

> Note UTSW is where Gwynne had all her testing done and was listed

before she double listed with UTSA, where she ended up having the

transplant.

> UTSW's current survival rates are around 92-93% one year and around

68% five years. The one year number means they typically have only one

first year death per year.

> One thing on which he did confirm my beliefs is that the more

transplants a hospital is doing the better success rates you can expect

them to have. It makes sense, but he indicated there was real data

supporting that theory, although he didn't provide it.

> They also gave me an excellent book on transplants in general,

" Partnering with Your Transplant Team. " This is published by the US Dept

of Health and Human Services and prepared by UNOS. It is available here:

> http://unos.org/resources/brochures.asp

> There is some very detailed information available here:

> http://unos.org/resources/policyBrochures.asp

> It includes information on the Lung Allocation System.

> Obviously, many of you know far more about this topic than I do and

are very far down the line. However, for those who aren't there yet,

like me, you might find a referral for an initial visit to be worth the

time.

>

>

>

>

>

>

> K

> Central Il

> Hubby ipf- 2006

> As for me and my house, we will serve the Lord

> 14

>

>

>

------------------------------------------------------------------------\

------

> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try

it now.

>