Someone please help me understand

J

jbrandonAW

New member
Ok so I am sure most of you have heard of Conner (www.notsobrightandshiny.blogspot.com).

Here is what I don't understand -why can he not get a lung transplant??? It really pisses me off that they won't give him one. I don't care if they think his chances aren't great after getting it but how many 7 year olds are on the list needing lungs compared to how many 7 year olds die every day (sorry if that sounds harsh). I just really don't understand why this Family has to go through this (or any family) and why Conner can't get a transplant (if he wanted one).
 
J

jbrandonAW

New member
Ok so I am sure most of you have heard of Conner (www.notsobrightandshiny.blogspot.com).

Here is what I don't understand -why can he not get a lung transplant??? It really pisses me off that they won't give him one. I don't care if they think his chances aren't great after getting it but how many 7 year olds are on the list needing lungs compared to how many 7 year olds die every day (sorry if that sounds harsh). I just really don't understand why this Family has to go through this (or any family) and why Conner can't get a transplant (if he wanted one).
 
J

jbrandonAW

New member
Ok so I am sure most of you have heard of Conner (www.notsobrightandshiny.blogspot.com).
<br />
<br />Here is what I don't understand -why can he not get a lung transplant??? It really pisses me off that they won't give him one. I don't care if they think his chances aren't great after getting it but how many 7 year olds are on the list needing lungs compared to how many 7 year olds die every day (sorry if that sounds harsh). I just really don't understand why this Family has to go through this (or any family) and why Conner can't get a transplant (if he wanted one).
 
A

AnD

New member
I don't know for sure, but I imagine it has to do with his prune belly syndrome and his inability to cough/cough correctly. While it's true that children do sadly die everyday, not all of them are organ donors. Therefore, the rare organs that are donated are allotted to the ones who are in the most need, while still having a good chance of it being successful. So, between his second condition and the low amount of donor organs available, it's a horrible reality, but it is reality. <img src="i/expressions/brokenheart.gif" border="0">

Someone correct me please if I'm wrong.
 
A

AnD

New member
I don't know for sure, but I imagine it has to do with his prune belly syndrome and his inability to cough/cough correctly. While it's true that children do sadly die everyday, not all of them are organ donors. Therefore, the rare organs that are donated are allotted to the ones who are in the most need, while still having a good chance of it being successful. So, between his second condition and the low amount of donor organs available, it's a horrible reality, but it is reality. <img src="i/expressions/brokenheart.gif" border="0">

Someone correct me please if I'm wrong.
 
A

AnD

New member
I don't know for sure, but I imagine it has to do with his prune belly syndrome and his inability to cough/cough correctly. While it's true that children do sadly die everyday, not all of them are organ donors. Therefore, the rare organs that are donated are allotted to the ones who are in the most need, while still having a good chance of it being successful. So, between his second condition and the low amount of donor organs available, it's a horrible reality, but it is reality. <img src="i/expressions/brokenheart.gif" border="0">
<br />
<br />Someone correct me please if I'm wrong.
 
J

JORDYSMOM

New member
Jessica, I'm not sure of all of the circumstances surrounding connor's situation, but I believe that the other disorder/disease that he has may be one of the reasons.

He has prune belly syndrome, and it causes the lungs to be smaller than normal. The muscles that most of us have around our lungs to help us cough are greatly restricted in connor's case. It may be that he does not have room for a set of lungs, or that his body would most certainly not survive the transplant. I just don't know. It is very sad, and heartbreaking. I can't imagine how he and his family must be feeling. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Connor and his family have certainly taken this hand they've been dealt, and tried to turn it into something positive for others. To take such a personal tragedy, and share it with the world, in order to raise awareness, and help others is such a selfless act. <img src="i/expressions/heart.gif" border="0">

Stacey
 
J

JORDYSMOM

New member
Jessica, I'm not sure of all of the circumstances surrounding connor's situation, but I believe that the other disorder/disease that he has may be one of the reasons.

He has prune belly syndrome, and it causes the lungs to be smaller than normal. The muscles that most of us have around our lungs to help us cough are greatly restricted in connor's case. It may be that he does not have room for a set of lungs, or that his body would most certainly not survive the transplant. I just don't know. It is very sad, and heartbreaking. I can't imagine how he and his family must be feeling. <img src="i/expressions/face-icon-small-sad.gif" border="0">

Connor and his family have certainly taken this hand they've been dealt, and tried to turn it into something positive for others. To take such a personal tragedy, and share it with the world, in order to raise awareness, and help others is such a selfless act. <img src="i/expressions/heart.gif" border="0">

Stacey
 
J

JORDYSMOM

New member
Jessica, I'm not sure of all of the circumstances surrounding connor's situation, but I believe that the other disorder/disease that he has may be one of the reasons.
<br />
<br />He has prune belly syndrome, and it causes the lungs to be smaller than normal. The muscles that most of us have around our lungs to help us cough are greatly restricted in connor's case. It may be that he does not have room for a set of lungs, or that his body would most certainly not survive the transplant. I just don't know. It is very sad, and heartbreaking. I can't imagine how he and his family must be feeling. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Connor and his family have certainly taken this hand they've been dealt, and tried to turn it into something positive for others. To take such a personal tragedy, and share it with the world, in order to raise awareness, and help others is such a selfless act. <img src="i/expressions/heart.gif" border="0">
<br />
<br />Stacey
 
J

JustDucky

New member
I cry every time I read that blog, it is just heartbreaking that a 7 year old has to die from this disease. I can't begin to imagine the heartbreak that the family is feeling with each passing day. I can only pray, yet I feel it isn't enough.....

I am also thinking it is because of his prune belly syndrome why he would never qualify for tx. He lacks the muscles needed for an effective cough to clear secretions and would make for a less than successful transplant. That's my problem too...because I have diaphragmatic problems, I would never qualify for a tx either, so I have to make do with my current lungs for as long as they will hold out. Frustrating and seemingly unfair, but all the same understandable.
 
J

JustDucky

New member
I cry every time I read that blog, it is just heartbreaking that a 7 year old has to die from this disease. I can't begin to imagine the heartbreak that the family is feeling with each passing day. I can only pray, yet I feel it isn't enough.....

I am also thinking it is because of his prune belly syndrome why he would never qualify for tx. He lacks the muscles needed for an effective cough to clear secretions and would make for a less than successful transplant. That's my problem too...because I have diaphragmatic problems, I would never qualify for a tx either, so I have to make do with my current lungs for as long as they will hold out. Frustrating and seemingly unfair, but all the same understandable.
 
J

JustDucky

New member
I cry every time I read that blog, it is just heartbreaking that a 7 year old has to die from this disease. I can't begin to imagine the heartbreak that the family is feeling with each passing day. I can only pray, yet I feel it isn't enough.....
<br />
<br />I am also thinking it is because of his prune belly syndrome why he would never qualify for tx. He lacks the muscles needed for an effective cough to clear secretions and would make for a less than successful transplant. That's my problem too...because I have diaphragmatic problems, I would never qualify for a tx either, so I have to make do with my current lungs for as long as they will hold out. Frustrating and seemingly unfair, but all the same understandable.
 
C

coltsfan715

New member
I think there is a combination of issues that come into play with this situation.

I haven't read the articles and stuff that everyone has been posting but have looked up prune belly syndrome risks/complications and such. I think that it is possible that his other illness may be causing problems that would make the transplant more difficult. Be it that the issues are the smaller lungs, the difference in muscle capability, or other organ involvement. It is also possible that the family opted not to go that route, if that is the case (again if the articles say differently I haven't read through them all), then there is really no issue as to whether or not they would list him. Also something else to consider for his age, the waiting list still functions by time you have waited. The list for adults and pediatrics ages 12 and older functions based on need, while children under age 12 must wait their turn basically. It may be something that even if they opted to list him it would be pointless because of the length of time he may have to wait.

I just wanted to put those things out there. I feel badly for the family and hate it for this little boy, it truly is heart breaking.

As for people saying the lack of ability to cough can cause issues post transplant - I guess it could but I never really coughed post transplant while in the hospital. With my incisions it was painful and I did what I could not to cough. I still don't cough much and even at that I have a different much weaker cough now than I had before transplant. I guess it could play an issue, but that was never mentioned to me as something they considered as a yay or nay to transplant. I could see the muscle issue being a problems for other reasons, but not so much in the coughing aspect.

Linds
 
C

coltsfan715

New member
I think there is a combination of issues that come into play with this situation.

I haven't read the articles and stuff that everyone has been posting but have looked up prune belly syndrome risks/complications and such. I think that it is possible that his other illness may be causing problems that would make the transplant more difficult. Be it that the issues are the smaller lungs, the difference in muscle capability, or other organ involvement. It is also possible that the family opted not to go that route, if that is the case (again if the articles say differently I haven't read through them all), then there is really no issue as to whether or not they would list him. Also something else to consider for his age, the waiting list still functions by time you have waited. The list for adults and pediatrics ages 12 and older functions based on need, while children under age 12 must wait their turn basically. It may be something that even if they opted to list him it would be pointless because of the length of time he may have to wait.

I just wanted to put those things out there. I feel badly for the family and hate it for this little boy, it truly is heart breaking.

As for people saying the lack of ability to cough can cause issues post transplant - I guess it could but I never really coughed post transplant while in the hospital. With my incisions it was painful and I did what I could not to cough. I still don't cough much and even at that I have a different much weaker cough now than I had before transplant. I guess it could play an issue, but that was never mentioned to me as something they considered as a yay or nay to transplant. I could see the muscle issue being a problems for other reasons, but not so much in the coughing aspect.

Linds
 
C

coltsfan715

New member
I think there is a combination of issues that come into play with this situation.
<br />
<br />I haven't read the articles and stuff that everyone has been posting but have looked up prune belly syndrome risks/complications and such. I think that it is possible that his other illness may be causing problems that would make the transplant more difficult. Be it that the issues are the smaller lungs, the difference in muscle capability, or other organ involvement. It is also possible that the family opted not to go that route, if that is the case (again if the articles say differently I haven't read through them all), then there is really no issue as to whether or not they would list him. Also something else to consider for his age, the waiting list still functions by time you have waited. The list for adults and pediatrics ages 12 and older functions based on need, while children under age 12 must wait their turn basically. It may be something that even if they opted to list him it would be pointless because of the length of time he may have to wait.
<br />
<br />I just wanted to put those things out there. I feel badly for the family and hate it for this little boy, it truly is heart breaking.
<br />
<br />As for people saying the lack of ability to cough can cause issues post transplant - I guess it could but I never really coughed post transplant while in the hospital. With my incisions it was painful and I did what I could not to cough. I still don't cough much and even at that I have a different much weaker cough now than I had before transplant. I guess it could play an issue, but that was never mentioned to me as something they considered as a yay or nay to transplant. I could see the muscle issue being a problems for other reasons, but not so much in the coughing aspect.
<br />
<br />Linds
 
J

JustDucky

New member
You make a good point Linds...I guess if the muscles aren't strong enough to draw in deep breaths to keep the lungs open, then that is an issue. Trust me, weak respiratory muscles will impede deep breathing. My PFT's reflect that as well as the obvious obstructive disease from CF. If I didn't have diaphragmatic weakness, my PFT's would probably be better in that respect. But I can't physically blow hard, my muscles don't allow it.. I suspect Connor has similar problems in that respect. If you can't take deep breaths, then the lungs don't open up as well, predisposing them to atelectasis (which I have frequently) and or pneumonia.
Coughing was tricky for me at one point too, so much so that I had to be suctioned because I could not get the crud out of my lungs on my own...the docs did not want that sitting in there, festering. So I guess it is the whole process that has to be looked at.

I just read the latest, I am just sitting here in tears for the whole family. Please pray for them...Just heartbreaking <img src="i/expressions/face-icon-small-sad.gif" border="0">

Jenn
 
J

JustDucky

New member
You make a good point Linds...I guess if the muscles aren't strong enough to draw in deep breaths to keep the lungs open, then that is an issue. Trust me, weak respiratory muscles will impede deep breathing. My PFT's reflect that as well as the obvious obstructive disease from CF. If I didn't have diaphragmatic weakness, my PFT's would probably be better in that respect. But I can't physically blow hard, my muscles don't allow it.. I suspect Connor has similar problems in that respect. If you can't take deep breaths, then the lungs don't open up as well, predisposing them to atelectasis (which I have frequently) and or pneumonia.
Coughing was tricky for me at one point too, so much so that I had to be suctioned because I could not get the crud out of my lungs on my own...the docs did not want that sitting in there, festering. So I guess it is the whole process that has to be looked at.

I just read the latest, I am just sitting here in tears for the whole family. Please pray for them...Just heartbreaking <img src="i/expressions/face-icon-small-sad.gif" border="0">

Jenn
 
J

JustDucky

New member
You make a good point Linds...I guess if the muscles aren't strong enough to draw in deep breaths to keep the lungs open, then that is an issue. Trust me, weak respiratory muscles will impede deep breathing. My PFT's reflect that as well as the obvious obstructive disease from CF. If I didn't have diaphragmatic weakness, my PFT's would probably be better in that respect. But I can't physically blow hard, my muscles don't allow it.. I suspect Connor has similar problems in that respect. If you can't take deep breaths, then the lungs don't open up as well, predisposing them to atelectasis (which I have frequently) and or pneumonia.
<br />Coughing was tricky for me at one point too, so much so that I had to be suctioned because I could not get the crud out of my lungs on my own...the docs did not want that sitting in there, festering. So I guess it is the whole process that has to be looked at.
<br />
<br />I just read the latest, I am just sitting here in tears for the whole family. Please pray for them...Just heartbreaking <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />Jenn
 
M

MaksNana

New member
Hi Jessica,
I do agree with a lot Linds is saying. There can be so many reasons a child can't get a transplant, or maybe they tried and couldn't.
I know a little boy on this site Garren, who did get a TX, I think at age 8.
The one thing about this is there are a lot of children, 18months, 8 months, 4yrs, 6yrs, 8yrs, and on who still pass away with this horrid disease.

The 'mean value age' actually means half will die young and half will live older. I hate this disease, like I'm sure everyone else here does also!!!! Let's just say, ONE is to many!

As far as Sarah trying to make this positive for us, as was stated earlier ,I don't think that was her point at all. She opened her Heart,and Soul to us, her Pain, Fear, Loss, and Begged for people to not turn away from them. She has been only what is most likly expected, she has shared all her fears, her anger, and she has wanted people to wake up!She is STRONG, SCARED, FAITHFUL, BUT MOST OF ALL SHE IS LOST right now, and needs us all!HER SOUL HURTS!!<img src="i/expressions/face-icon-small-sad.gif" border="0">


We don't think to much of the very young that we have lost to this disease, but , now that the cyber space is here,there are just as many young that die from this disease as older people and we are having beautiful people like Sarah share with us what is in her heart and what she is going through. Just like Eva, she let us into her life also. I think it is a gift that these families and others that are sharing more with us.

We are so isolated except through the internet, I feel things will change faster because we now have the internet. We can ask questions, and see what other doctors are doing all over the world. And we can stand up to the doctors that don't want to listen because this makes us more knowledgealbe.Please don't get me wrong we have great doctors, and we have the a_ _ doctors, that are set in their ways and the 'Politics' get in the way! I will never stop saying what a wise man told me once ,when Makailyn was diagnoised,,,,,,,,, KNOWLEDGE IS POWER !!!

You take care sweetie my heart is with you always,and with Sarah and Conner right now, Karla <img src="i/expressions/brokenheart.gif" border="0">
 
M

MaksNana

New member
Hi Jessica,
I do agree with a lot Linds is saying. There can be so many reasons a child can't get a transplant, or maybe they tried and couldn't.
I know a little boy on this site Garren, who did get a TX, I think at age 8.
The one thing about this is there are a lot of children, 18months, 8 months, 4yrs, 6yrs, 8yrs, and on who still pass away with this horrid disease.

The 'mean value age' actually means half will die young and half will live older. I hate this disease, like I'm sure everyone else here does also!!!! Let's just say, ONE is to many!

As far as Sarah trying to make this positive for us, as was stated earlier ,I don't think that was her point at all. She opened her Heart,and Soul to us, her Pain, Fear, Loss, and Begged for people to not turn away from them. She has been only what is most likly expected, she has shared all her fears, her anger, and she has wanted people to wake up!She is STRONG, SCARED, FAITHFUL, BUT MOST OF ALL SHE IS LOST right now, and needs us all!HER SOUL HURTS!!<img src="i/expressions/face-icon-small-sad.gif" border="0">


We don't think to much of the very young that we have lost to this disease, but , now that the cyber space is here,there are just as many young that die from this disease as older people and we are having beautiful people like Sarah share with us what is in her heart and what she is going through. Just like Eva, she let us into her life also. I think it is a gift that these families and others that are sharing more with us.

We are so isolated except through the internet, I feel things will change faster because we now have the internet. We can ask questions, and see what other doctors are doing all over the world. And we can stand up to the doctors that don't want to listen because this makes us more knowledgealbe.Please don't get me wrong we have great doctors, and we have the a_ _ doctors, that are set in their ways and the 'Politics' get in the way! I will never stop saying what a wise man told me once ,when Makailyn was diagnoised,,,,,,,,, KNOWLEDGE IS POWER !!!

You take care sweetie my heart is with you always,and with Sarah and Conner right now, Karla <img src="i/expressions/brokenheart.gif" border="0">
 
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