We're back from evaluation

[Marjolein]

High 39's, or 40 sounds well to me too. Or at least, too well for transplant. Overhere they start evaluation at 30 or maybe low 30s. I think i had my first talk at the tx clinic when my fev1 was 32%. I was 12. My sats were always, 91/92 and i had o2 at night. My fev1 never really changed, wheather i just had iv's or not. After about 2 years on the list my fev1 was between 26 and 28% i think. And i was so stable that i didn't want a transplant then. But the tx clinic kept following me and my fev1 went back very slowly. To about 20% 1.5 years ago. I started thinking i would go back acitive on the list (knowing i was high on the list already). I needed more o2, most hours in the day too. And used my wheelchair more and more. Practically for everything the last few months before my tx. With my second eval in november 2005 my fev1 was 17%. After that i didn't do them anymore, we knew the numbers were bad and i was just getting too tired when i had to do them. I was back active on the list on dec7th 2005. And my health declined more and more. IV's didn't make me feel better anymore. And now, after i've had my transplant a few people have said that they were getting really scared for me...

I know, and in my heart i've always known, that i made the right choice in 'delaying' my transplant. I'm happy about that, knowing i have those extra years. Who could have known i could have almost 10 years extra before my tx...

I'm glad to hear Anna has another appt in 3 months. It's good they keep an eye on her. And i'm sure her CF clinic will let them know what's going on if needed too?.. I hope Anna will feel well for a little longer now.

Keep us updated.

Marjolein

 

[Joanne]

Liza,

Hope that her wrist is feeling better.

Yes, blood gases are drawn from the wrist from an artery. Painful test, but needed.

I would call the docs if I were you just to be sure her wrist is okay. Last thing you want is an infection.

Keep us updated.

Joanne

 

[Joanne]

Liza,

Hope that her wrist is feeling better.

Yes, blood gases are drawn from the wrist from an artery. Painful test, but needed.

I would call the docs if I were you just to be sure her wrist is okay. Last thing you want is an infection.

Keep us updated.

Joanne

 

[Joanne]

Liza,

Hope that her wrist is feeling better.

Yes, blood gases are drawn from the wrist from an artery. Painful test, but needed.

I would call the docs if I were you just to be sure her wrist is okay. Last thing you want is an infection.

Keep us updated.

Joanne

 

[Liza]

Hi again, her pft's get to the high 30's when she is finishing up her IV's. When she's had to be readmitted a few weeks later, usually, they've fallen back down to 28, once which scared us all to death (docs, nurses and us)it had fallen to 23.

Her need for antibiotics has been so frequent that she doesn't even need to get her port flushed once a month because she doesn't make it that long between. Her not needing oxygen during the day is good though. We have a finger o2sat meter and check it. It was kind low last night 91 but she was headed to bed and her night time oxygen.

She felt good yesterday though and today makes a week she's been off. She's looking good today. I've been rearranging the furniture so we can put up the Christmas tree and start decorating.

 

[Liza]

Hi again, her pft's get to the high 30's when she is finishing up her IV's. When she's had to be readmitted a few weeks later, usually, they've fallen back down to 28, once which scared us all to death (docs, nurses and us)it had fallen to 23.

Her need for antibiotics has been so frequent that she doesn't even need to get her port flushed once a month because she doesn't make it that long between. Her not needing oxygen during the day is good though. We have a finger o2sat meter and check it. It was kind low last night 91 but she was headed to bed and her night time oxygen.

She felt good yesterday though and today makes a week she's been off. She's looking good today. I've been rearranging the furniture so we can put up the Christmas tree and start decorating.

 

[Liza]

Hi again, her pft's get to the high 30's when she is finishing up her IV's. When she's had to be readmitted a few weeks later, usually, they've fallen back down to 28, once which scared us all to death (docs, nurses and us)it had fallen to 23.

Her need for antibiotics has been so frequent that she doesn't even need to get her port flushed once a month because she doesn't make it that long between. Her not needing oxygen during the day is good though. We have a finger o2sat meter and check it. It was kind low last night 91 but she was headed to bed and her night time oxygen.

She felt good yesterday though and today makes a week she's been off. She's looking good today. I've been rearranging the furniture so we can put up the Christmas tree and start decorating.

 

[madisonsmom]

Liza,
I was reading about your situation and am so reminded of our situation w/ my 21 yo daughter w/ CF. My daughter was listed for transplant 2years ago. We were told to list her as her hosp stays were more frequent. The question of when to transplant seems a hard decsion to make. Recently we were told that my daughter was placed on an in active status as she was still bouncing back to the lo 40's (PFTs ). However she has spent at least 2weks out of 4-5 on IV antibiotics.
with her PFTs in the 20's on 3 L O2 with sats in the lo 90's.Her MD just told me that if she got a bad virus on top of her CF she would die.....I guess I just don't get it.
I'm trying to understand the whole system of transplant and am questioning (at least at our facility) the actual motive behind all this. I don't actually mean that he MDs are against us I just wonder if they look at the statistics and make judgements based on their situation and age.
I hear you, when you just want her to be able to finish 1 semester. I start to wonder if my daughter isn't losing her will as she has had to drop many classes due to her CF. I too, just want to reach a goal, hell I'd take 2months at this point.

kathy
mom of 21 yo daughter w/ CF

 

[madisonsmom]

Liza,
I was reading about your situation and am so reminded of our situation w/ my 21 yo daughter w/ CF. My daughter was listed for transplant 2years ago. We were told to list her as her hosp stays were more frequent. The question of when to transplant seems a hard decsion to make. Recently we were told that my daughter was placed on an in active status as she was still bouncing back to the lo 40's (PFTs ). However she has spent at least 2weks out of 4-5 on IV antibiotics.
with her PFTs in the 20's on 3 L O2 with sats in the lo 90's.Her MD just told me that if she got a bad virus on top of her CF she would die.....I guess I just don't get it.
I'm trying to understand the whole system of transplant and am questioning (at least at our facility) the actual motive behind all this. I don't actually mean that he MDs are against us I just wonder if they look at the statistics and make judgements based on their situation and age.
I hear you, when you just want her to be able to finish 1 semester. I start to wonder if my daughter isn't losing her will as she has had to drop many classes due to her CF. I too, just want to reach a goal, hell I'd take 2months at this point.

kathy
mom of 21 yo daughter w/ CF

 

[madisonsmom]

Liza,
I was reading about your situation and am so reminded of our situation w/ my 21 yo daughter w/ CF. My daughter was listed for transplant 2years ago. We were told to list her as her hosp stays were more frequent. The question of when to transplant seems a hard decsion to make. Recently we were told that my daughter was placed on an in active status as she was still bouncing back to the lo 40's (PFTs ). However she has spent at least 2weks out of 4-5 on IV antibiotics.
with her PFTs in the 20's on 3 L O2 with sats in the lo 90's.Her MD just told me that if she got a bad virus on top of her CF she would die.....I guess I just don't get it.
I'm trying to understand the whole system of transplant and am questioning (at least at our facility) the actual motive behind all this. I don't actually mean that he MDs are against us I just wonder if they look at the statistics and make judgements based on their situation and age.
I hear you, when you just want her to be able to finish 1 semester. I start to wonder if my daughter isn't losing her will as she has had to drop many classes due to her CF. I too, just want to reach a goal, hell I'd take 2months at this point.

kathy
mom of 21 yo daughter w/ CF

 

[Joanne]

Kathy,

The new lung allocation system is hard to understand, and I expect revisions will be made this year again.

When the docs said your daughter was bouncing to the 40's she was put on the INACTIVE list. But she is still on the list and the docs should be reviewing her health all the time, and making her score higher, so she is higher on the list. I would expect since she is sick right now, that her score has been increased. Ask the tx team about this, you have every right to contact them and find out what is going on and have they increased her score.

Joanne Schum

 

[Joanne]

Kathy,

The new lung allocation system is hard to understand, and I expect revisions will be made this year again.

When the docs said your daughter was bouncing to the 40's she was put on the INACTIVE list. But she is still on the list and the docs should be reviewing her health all the time, and making her score higher, so she is higher on the list. I would expect since she is sick right now, that her score has been increased. Ask the tx team about this, you have every right to contact them and find out what is going on and have they increased her score.

Joanne Schum

 

[Joanne]

Kathy,

The new lung allocation system is hard to understand, and I expect revisions will be made this year again.

When the docs said your daughter was bouncing to the 40's she was put on the INACTIVE list. But she is still on the list and the docs should be reviewing her health all the time, and making her score higher, so she is higher on the list. I would expect since she is sick right now, that her score has been increased. Ask the tx team about this, you have every right to contact them and find out what is going on and have they increased her score.

Joanne Schum

 

[kybert]

<div class="FTQUOTE"><begin quote>I want to think, like I do after every hospitalization and round of antibiotics that this is the one. The one that will rid her of what ever bug it is that keeps bringing her down.</end quote></div>

oh gee i know the feeling. i can only last 1 to 2 weeks off iv's. the last course i had i TRULY thought that i was going to last a while off them. i was so happy that i might get a month of more off. then bam, i was sick a week and a half later. it bums you out so much <img src="">

i also know how you feel when iv's are the only thing keeping the fev1 up. my fev1 is ok just as i come off iv's but plummet so damn fast when i get off them. its very hard for doctors to get an accurate idea of how sick you really are when they wont stay the same. sure, 40% is too high transplant, but if your daughter is living off of iv drugs, how is that having a good quality of life? its just as bad as having less than 30% but not being on iv's all the time.

 

[kybert]

<div class="FTQUOTE"><begin quote>I want to think, like I do after every hospitalization and round of antibiotics that this is the one. The one that will rid her of what ever bug it is that keeps bringing her down.</end quote></div>

oh gee i know the feeling. i can only last 1 to 2 weeks off iv's. the last course i had i TRULY thought that i was going to last a while off them. i was so happy that i might get a month of more off. then bam, i was sick a week and a half later. it bums you out so much <img src="">

i also know how you feel when iv's are the only thing keeping the fev1 up. my fev1 is ok just as i come off iv's but plummet so damn fast when i get off them. its very hard for doctors to get an accurate idea of how sick you really are when they wont stay the same. sure, 40% is too high transplant, but if your daughter is living off of iv drugs, how is that having a good quality of life? its just as bad as having less than 30% but not being on iv's all the time.

 

[kybert]

<div class="FTQUOTE"><begin quote>I want to think, like I do after every hospitalization and round of antibiotics that this is the one. The one that will rid her of what ever bug it is that keeps bringing her down.</end quote></div>

oh gee i know the feeling. i can only last 1 to 2 weeks off iv's. the last course i had i TRULY thought that i was going to last a while off them. i was so happy that i might get a month of more off. then bam, i was sick a week and a half later. it bums you out so much <img src="">

i also know how you feel when iv's are the only thing keeping the fev1 up. my fev1 is ok just as i come off iv's but plummet so damn fast when i get off them. its very hard for doctors to get an accurate idea of how sick you really are when they wont stay the same. sure, 40% is too high transplant, but if your daughter is living off of iv drugs, how is that having a good quality of life? its just as bad as having less than 30% but not being on iv's all the time.

 

[madisonsmom]

I did call our transplant coordinator regarding Madison's situation and was told that she would discuss the situation w/ my daughter's pulmonologist.She also told me that Madison was in line to receive lungs very soon as she currently was the only one listed at our facility. In the mean time Her pulm. was telling us that we should look at a new center for transplant. She said that we neeed to come up with 3 places that we wanted to go to and she would write a referal. This whole situation has really made me question what is going on. When I pinned our pulmomologist down as to why we were getting 2 stories she simply said. "Madison needs to go to a facility that does more than we do here, she has very complicated case of CF. Now I'm angry, why is this all being dumped on us in the last hour. Her health has been complicated for a long time. Finding a new facility for transplant is alot of work. I've done my homework and have chose to take her to a hospital about an hour and half away. I'm getting absolutley no help from our "CFF accredited adult center". I'm starting to lose it, and my daughter is just trying to maintain some kind of life, while living on antibiotics. Personally I think we are getting crappy care as the transition to the adult center has been less than adequate, and we are not aloud to go back to where the overall interdiciplinary care was was consistant at the childrens hospital. I need some advice, where do I go with this situation? Madisonsmom

 

[madisonsmom]

I did call our transplant coordinator regarding Madison's situation and was told that she would discuss the situation w/ my daughter's pulmonologist.She also told me that Madison was in line to receive lungs very soon as she currently was the only one listed at our facility. In the mean time Her pulm. was telling us that we should look at a new center for transplant. She said that we neeed to come up with 3 places that we wanted to go to and she would write a referal. This whole situation has really made me question what is going on. When I pinned our pulmomologist down as to why we were getting 2 stories she simply said. "Madison needs to go to a facility that does more than we do here, she has very complicated case of CF. Now I'm angry, why is this all being dumped on us in the last hour. Her health has been complicated for a long time. Finding a new facility for transplant is alot of work. I've done my homework and have chose to take her to a hospital about an hour and half away. I'm getting absolutley no help from our "CFF accredited adult center". I'm starting to lose it, and my daughter is just trying to maintain some kind of life, while living on antibiotics. Personally I think we are getting crappy care as the transition to the adult center has been less than adequate, and we are not aloud to go back to where the overall interdiciplinary care was was consistant at the childrens hospital. I need some advice, where do I go with this situation? Madisonsmom

 

[madisonsmom]

I did call our transplant coordinator regarding Madison's situation and was told that she would discuss the situation w/ my daughter's pulmonologist.She also told me that Madison was in line to receive lungs very soon as she currently was the only one listed at our facility. In the mean time Her pulm. was telling us that we should look at a new center for transplant. She said that we neeed to come up with 3 places that we wanted to go to and she would write a referal. This whole situation has really made me question what is going on. When I pinned our pulmomologist down as to why we were getting 2 stories she simply said. "Madison needs to go to a facility that does more than we do here, she has very complicated case of CF. Now I'm angry, why is this all being dumped on us in the last hour. Her health has been complicated for a long time. Finding a new facility for transplant is alot of work. I've done my homework and have chose to take her to a hospital about an hour and half away. I'm getting absolutley no help from our "CFF accredited adult center". I'm starting to lose it, and my daughter is just trying to maintain some kind of life, while living on antibiotics. Personally I think we are getting crappy care as the transition to the adult center has been less than adequate, and we are not aloud to go back to where the overall interdiciplinary care was was consistant at the childrens hospital. I need some advice, where do I go with this situation? Madisonsmom

 

[madisonsmom]

<img src="i/expressions/face-icon-small-confused.gif" border="0"><div class="FTQUOTE"><begin quote><i>Originally posted by: <b>madisonsmom</b></i>

I did call our transplant coordinator regarding Madison's situation and was told that she would discuss the situation w/ my daughter's pulmonologist.She also told me that Madison was in line to receive lungs very soon as she currently was the only one listed at our facility. In the mean time Her pulm. was telling us that we should look at a new center for transplant. She said that we neeed to come up with 3 places that we wanted to go to and she would write a referal. This whole situation has really made me question what is going on. When I pinned our pulmomologist down as to why we were getting 2 stories she simply said. "Madison needs to go to a facility that does more than we do here, she has very complicated case of CF. Now I'm angry, why is this all being dumped on us in the last hour. Her health has been complicated for a long time. Finding a new facility for transplant is alot of work. I've done my homework and have chose to take her to a hospital about an hour and half away. I'm getting absolutley no help from our "CFF accredited adult center". I'm starting to lose it, and my daughter is just trying to maintain some kind of life, while living on antibiotics. Personally I think we are getting crappy care as the transition to the adult center has been less than adequate, and we are not aloud to go back to where the overall interdiciplinary care was was consistant at the childrens hospital. I need some advice, where do I go with this situation? Madisonsmom</end quote></div>