Re: Update on my visit with Shands

[Guest guest]

Sure do wish you good luck with the extensive testing at eval. It's tiring but worth it for those who want transplant. I do not. I'm too old.

Remember Gwynnie...she will forever be our poster child for transplant. May it all go as well for you.

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

Update on my visit with Shands

Here is a copy of the email we sent to family and friends yesterday.funny how I find it easier to write about myself in the third person.As you all know from our last correspondence, we were told that the University of Florida's teaching hospital, Shands, informed us that in order to be placed on the Lung Transplant List, their policy is that you must be in the last 12 months of life. The reason for this is the post transplant mortality rate makes this operation one of last resort.Today, Jim, Kathy and Shands agreed to the three days of testing and evaluation that, we believe, will result in her being placed on the Transplant List sometime within the next 30 days.The good news is that while the trend of deterioration of Kathy's lungs is significant, the Doctors do not believe that Kathy is quite yet within her last 12 months, but rather believe that this time is close upon us and the prudent, safest thing to do is to start the evaluation process now.We have secured Evaluation dates of May 28th, 29th, 30th for a full 8 hour per day, three day evaluation.The purpose of the evaluation is for Shands to determine that Kathy is physically, mentally, and medically a good candidate for the transplant procedure. We are confident that Kathy is a good candidate and the evaluation will result in her being placed on the transplant list sometime in mid-June. The average wait for a Lung Transplant is 6 months. During this time, we must commit to staying within 2 to 3 hours reporting time to the medical facility. After Kathy has the transplant, it is likely that she will spend 1 or 2 weeks in the hospital and 4 to 6 weeks in local accommodations so that she can partake in daily outpatient and evaluation services at the hospital. She will need to be on immune system suppressant medications for the rest of her life.This is something that we have been expecting for some time and while frightening in its implication, also provides a sense of relief that we are starting the process.We continue to be hopeful and prayerful in our approach and as always ask for your prayers and supportKathyflipf 4/07

[Guest guest]

Thank you Mama-Sher......I love what you have written under your

name. It is so true, but easy to forget sometimes. I need to work on

remembering that. I am 59.....60 in July.

Take care,

Kathy

>

> Sure do wish you good luck with the extensive testing at eval.

It's tiring but worth it for those who want transplant. I do not. I'm

too old.

> Remember Gwynnie...she will forever be our poster child for

transplant. May it all go as well for you.

> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.

> Don't fret about tomorrow, God is already there!

>

> Update on my visit with Shands

>

>

> Here is a copy of the email we sent to family and friends

> yesterday.funny how I find it easier to write about myself in the

> third person.

>

> As you all know from our last correspondence, we were told that

the

> University of Florida's teaching hospital, Shands, informed us

that

> in order to be placed on the Lung Transplant List, their policy

is

> that you must be in the last 12 months of life. The reason for

this

> is the post transplant mortality rate makes this operation one of

> last resort.

>

> Today, Jim, Kathy and Shands agreed to the three days of testing

and

> evaluation that, we believe, will result in her being placed on

the

> Transplant List sometime within the next 30 days.

>

> The good news is that while the trend of deterioration of Kathy's

> lungs is significant, the Doctors do not believe that Kathy is

quite

> yet within her last 12 months, but rather believe that this time

is

> close upon us and the prudent, safest thing to do is to start the

> evaluation process now.

>

> We have secured Evaluation dates of May 28th, 29th, 30th for a

full 8

> hour per day, three day evaluation.The purpose of the evaluation

is

> for Shands to determine that Kathy is physically, mentally, and

> medically a good candidate for the transplant procedure. We are

> confident that Kathy is a good candidate and the evaluation will

> result in her being placed on the transplant list sometime in mid-

> June. The average wait for a Lung Transplant is 6 months. During

this

> time, we must commit to staying within 2 to 3 hours reporting

time to

> the medical facility.

>

> After Kathy has the transplant, it is likely that she will spend

1 or

> 2 weeks in the hospital and 4 to 6 weeks in local accommodations

so

> that she can partake in daily outpatient and evaluation services

at

> the hospital. She will need to be on immune system suppressant

> medications for the rest of her life.

>

> This is something that we have been expecting for some time and

while

> frightening in its implication, also provides a sense of relief

that

> we are starting the process.

>

> We continue to be hopeful and prayerful in our approach and as

always

> ask for your prayers and support

>

> Kathyfl

> ipf 4/07

>

[Guest guest]

The best of luck in your 3 days of testing. While we know how tiring this is going to be, you must keep the goal in mind. As I read Gwynne's posts it is such a beautiful time for her as she can breathe deeply now. So as Bruce said to me the other night, this tiring time can be rested through and looking forward to the breath of life. Praying for you during these times. K Central Ilpatrickkathleen wrote: Thank you Mama-Sher......I love what you have written under your name. It is so true, but easy to forget sometimes. I need to work on remembering that. I am 59.....60 in July.Take care,Kathy>> Sure do wish you good luck with the extensive testing at eval. It's tiring but worth it for those who want transplant. I do not. I'm too old.> Remember Gwynnie...she will forever be our poster child for transplant. May it all go as well for you.> Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.> Don't fret about tomorrow, God is already there!> > Update on my visit with Shands> > > Here is a copy of the email we sent to family and friends > yesterday.funny how I find it easier to write about myself in the > third person.> > As you all know from our last correspondence, we were told that the > University of Florida's teaching hospital, Shands, informed us that > in order to be placed on the Lung Transplant List, their policy is > that you must be in the last 12 months of life. The reason for this > is the post transplant mortality rate makes this operation one of > last resort.> > Today, Jim, Kathy and Shands agreed to the three days of testing and > evaluation that, we believe, will result in her being placed on the > Transplant List sometime within the next 30 days.> > The good news is that while the trend of deterioration of Kathy's

> lungs is significant, the Doctors do not believe that Kathy is quite > yet within her last 12 months, but rather believe that this time is > close upon us and the prudent, safest thing to do is to start the > evaluation process now.> > We have secured Evaluation dates of May 28th, 29th, 30th for a full 8 > hour per day, three day evaluation.The purpose of the evaluation is > for Shands to determine that Kathy is physically, mentally, and > medically a good candidate for the transplant procedure. We are > confident that Kathy is a good candidate and the evaluation will > result in her being placed on the transplant list sometime in mid-> June. The average wait for a Lung Transplant is 6 months. During this > time, we must commit to staying within 2 to 3 hours reporting time to > the medical facility. > > After Kathy has the transplant, it

is likely that she will spend 1 or > 2 weeks in the hospital and 4 to 6 weeks in local accommodations so > that she can partake in daily outpatient and evaluation services at > the hospital. She will need to be on immune system suppressant > medications for the rest of her life.> > This is something that we have been expecting for some time and while > frightening in its implication, also provides a sense of relief that > we are starting the process.> > We continue to be hopeful and prayerful in our approach and as always > ask for your prayers and support> > Kathyfl> ipf 4/07> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14

[Guest guest]

> Thank you Mama-Sher......I love what you have written under your

> name. It is so true, but easy to forget sometimes. I need to work

on

> remembering that. I am 59.....60 in July.

> Take care,

> Kathy

> >

> > Sure do wish you good luck with the extensive testing at eval.

> It's tiring but worth it for those who want transplant. I do not.

I'm

> too old.

> > Remember Gwynnie...she will forever be our poster child for

> transplant. May it all go as well for you.

> > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR.

> > Don't fret about tomorrow, God is already there!

> >

> > Update on my visit with Shands

> >

> >

> > Here is a copy of the email we sent to family and friends

> > yesterday.funny how I find it easier to write about myself in the

> > third person.

> >

> > As you all know from our last correspondence, we were told that

> the

> > University of Florida's teaching hospital, Shands, informed us

> that

> > in order to be placed on the Lung Transplant List, their policy

> is

> > that you must be in the last 12 months of life. The reason for

> this

> > is the post transplant mortality rate makes this operation one of

> > last resort.

> >

> > Today, Jim, Kathy and Shands agreed to the three days of testing

> and

> > evaluation that, we believe, will result in her being placed on

> the

> > Transplant List sometime within the next 30 days.

> >

> > The good news is that while the trend of deterioration of Kathy's

> > lungs is significant, the Doctors do not believe that Kathy is

> quite

> > yet within her last 12 months, but rather believe that this time

> is

> > close upon us and the prudent, safest thing to do is to start the

> > evaluation process now.

> >

> > We have secured Evaluation dates of May 28th, 29th, 30th for a

> full 8

> > hour per day, three day evaluation.The purpose of the evaluation

> is

> > for Shands to determine that Kathy is physically, mentally, and

> > medically a good candidate for the transplant procedure. We are

> > confident that Kathy is a good candidate and the evaluation will

> > result in her being placed on the transplant list sometime in mid-

> > June. The average wait for a Lung Transplant is 6 months. During

> this

> > time, we must commit to staying within 2 to 3 hours reporting

> time to

> > the medical facility.

> >

> > After Kathy has the transplant, it is likely that she will spend

> 1 or

> > 2 weeks in the hospital and 4 to 6 weeks in local accommodations

> so

> > that she can partake in daily outpatient and evaluation services

> at

> > the hospital. She will need to be on immune system suppressant

> > medications for the rest of her life.

> >

> > This is something that we have been expecting for some time and

> while

> > frightening in its implication, also provides a sense of relief

> that

> > we are starting the process.

> >

> > We continue to be hopeful and prayerful in our approach and as

> always

> > ask for your prayers and support

> >

> > Kathyfl

> > ipf 4/07

> >

>

>

>

>

>

>

> K

> Central Il

> Hubby ipf- 2006

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

> 14

>