How many people have been told or are tired of......

[kfw1963]

When I was born my parents were told I would be lucky to live to be 3, then 5, then 8, then 13 and so on. When I was in my early 20's my doc said 35 was a reasonable expectation based on my health then. Now my doc talks about keeping me going until my kids graduate high school and hopefully even college(they were 7 and 11 at the time). He also pointed out that unless we did something my pft's were showing that in about 5-7yrs I would be in transplant range. I don't think it was a scare tactic as much as just trying to show how the progression was going.

 

[kfw1963]

When I was born my parents were told I would be lucky to live to be 3, then 5, then 8, then 13 and so on. When I was in my early 20's my doc said 35 was a reasonable expectation based on my health then. Now my doc talks about keeping me going until my kids graduate high school and hopefully even college(they were 7 and 11 at the time). He also pointed out that unless we did something my pft's were showing that in about 5-7yrs I would be in transplant range. I don't think it was a scare tactic as much as just trying to show how the progression was going.

 

[kfw1963]

When I was born my parents were told I would be lucky to live to be 3, then 5, then 8, then 13 and so on. When I was in my early 20's my doc said 35 was a reasonable expectation based on my health then. Now my doc talks about keeping me going until my kids graduate high school and hopefully even college(they were 7 and 11 at the time). He also pointed out that unless we did something my pft's were showing that in about 5-7yrs I would be in transplant range. I don't think it was a scare tactic as much as just trying to show how the progression was going.

 

[kfw1963]

When I was born my parents were told I would be lucky to live to be 3, then 5, then 8, then 13 and so on. When I was in my early 20's my doc said 35 was a reasonable expectation based on my health then. Now my doc talks about keeping me going until my kids graduate high school and hopefully even college(they were 7 and 11 at the time). He also pointed out that unless we did something my pft's were showing that in about 5-7yrs I would be in transplant range. I don't think it was a scare tactic as much as just trying to show how the progression was going.

 

[kfw1963]

When I was born my parents were told I would be lucky to live to be 3, then 5, then 8, then 13 and so on. When I was in my early 20's my doc said 35 was a reasonable expectation based on my health then. Now my doc talks about keeping me going until my kids graduate high school and hopefully even college(they were 7 and 11 at the time). He also pointed out that unless we did something my pft's were showing that in about 5-7yrs I would be in transplant range. I don't think it was a scare tactic as much as just trying to show how the progression was going.

 

[jdubbs]

My docs have never given me estimates directly, but I have never asked. I assume they told my parents the numbers when I was first diagnosed. I remember 18 being the number as a kid. That number has doubled. I hope it doubles again.

 

[jdubbs]

My docs have never given me estimates directly, but I have never asked. I assume they told my parents the numbers when I was first diagnosed. I remember 18 being the number as a kid. That number has doubled. I hope it doubles again.

 

[jdubbs]

My docs have never given me estimates directly, but I have never asked. I assume they told my parents the numbers when I was first diagnosed. I remember 18 being the number as a kid. That number has doubled. I hope it doubles again.

 

[jdubbs]

My docs have never given me estimates directly, but I have never asked. I assume they told my parents the numbers when I was first diagnosed. I remember 18 being the number as a kid. That number has doubled. I hope it doubles again.

 

[jdubbs]

My docs have never given me estimates directly, but I have never asked. I assume they told my parents the numbers when I was first diagnosed. I remember 18 being the number as a kid. That number has doubled. I hope it doubles again.

 

[TestifyToLove]

M's doctors refuse to quantify anything. His Heptalogist stated we have "a few years" but refused to clarify that further.

But, for us the liver disease makes everything more complicated. I don't believe he will see 30. I'm pretty positive he won't even see 25 but I still hope for 20. Because he is not a candidate for a new liver, he truly only has as long as this liver will give him. And, I don't think they really know how long that is.

I can say that our doctors are very gentle and considerate when we are discussing the terminal nature of M's disease progression. We're fully aware that M is running out of time daily. We fight to give him everything we can and to weather his demons with him in what life he has. But, I would be furious if his doctors rudely and persistently kept throwing his terminal status in our face.

Knowing it and having it thrown at me are two different things.

 

[TestifyToLove]

M's doctors refuse to quantify anything. His Heptalogist stated we have "a few years" but refused to clarify that further.

But, for us the liver disease makes everything more complicated. I don't believe he will see 30. I'm pretty positive he won't even see 25 but I still hope for 20. Because he is not a candidate for a new liver, he truly only has as long as this liver will give him. And, I don't think they really know how long that is.

I can say that our doctors are very gentle and considerate when we are discussing the terminal nature of M's disease progression. We're fully aware that M is running out of time daily. We fight to give him everything we can and to weather his demons with him in what life he has. But, I would be furious if his doctors rudely and persistently kept throwing his terminal status in our face.

Knowing it and having it thrown at me are two different things.

 

[TestifyToLove]

M's doctors refuse to quantify anything. His Heptalogist stated we have "a few years" but refused to clarify that further.

But, for us the liver disease makes everything more complicated. I don't believe he will see 30. I'm pretty positive he won't even see 25 but I still hope for 20. Because he is not a candidate for a new liver, he truly only has as long as this liver will give him. And, I don't think they really know how long that is.

I can say that our doctors are very gentle and considerate when we are discussing the terminal nature of M's disease progression. We're fully aware that M is running out of time daily. We fight to give him everything we can and to weather his demons with him in what life he has. But, I would be furious if his doctors rudely and persistently kept throwing his terminal status in our face.

Knowing it and having it thrown at me are two different things.

 

[TestifyToLove]

M's doctors refuse to quantify anything. His Heptalogist stated we have "a few years" but refused to clarify that further.

But, for us the liver disease makes everything more complicated. I don't believe he will see 30. I'm pretty positive he won't even see 25 but I still hope for 20. Because he is not a candidate for a new liver, he truly only has as long as this liver will give him. And, I don't think they really know how long that is.

I can say that our doctors are very gentle and considerate when we are discussing the terminal nature of M's disease progression. We're fully aware that M is running out of time daily. We fight to give him everything we can and to weather his demons with him in what life he has. But, I would be furious if his doctors rudely and persistently kept throwing his terminal status in our face.

Knowing it and having it thrown at me are two different things.

 

[TestifyToLove]

M's doctors refuse to quantify anything. His Heptalogist stated we have "a few years" but refused to clarify that further.
<br />
<br />But, for us the liver disease makes everything more complicated. I don't believe he will see 30. I'm pretty positive he won't even see 25 but I still hope for 20. Because he is not a candidate for a new liver, he truly only has as long as this liver will give him. And, I don't think they really know how long that is.
<br />
<br />I can say that our doctors are very gentle and considerate when we are discussing the terminal nature of M's disease progression. We're fully aware that M is running out of time daily. We fight to give him everything we can and to weather his demons with him in what life he has. But, I would be furious if his doctors rudely and persistently kept throwing his terminal status in our face.
<br />
<br />Knowing it and having it thrown at me are two different things.

 

[Ratatosk]

Never been given an age; however, when DS was in the NICU, a doctor told my MIL that there'd be a cure in 5 years. That was 6 years ago...

 

[Ratatosk]

Never been given an age; however, when DS was in the NICU, a doctor told my MIL that there'd be a cure in 5 years. That was 6 years ago...

 

[Ratatosk]

Never been given an age; however, when DS was in the NICU, a doctor told my MIL that there'd be a cure in 5 years. That was 6 years ago...

 

[Ratatosk]

Never been given an age; however, when DS was in the NICU, a doctor told my MIL that there'd be a cure in 5 years. That was 6 years ago...

 

[Ratatosk]

Never been given an age; however, when DS was in the NICU, a doctor told my MIL that there'd be a cure in 5 years. That was 6 years ago...