We're back from evaluation

[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>

 

[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>

 

[EnergyGal]

What state do you live in? What is the nearest transplant center other than the one you are at now? I would not get to angry with your center. It sounds like they are looking out for your daughter and they are being honest. Perhaps your daughters health has declined and they want you to get her lungs quicker somewhere else?

Are they still willing to transplant her at your current center? If so, it does not hurt to go to another center. If she is currently listed then she will probably be number one in both places. I was listed at three centers for one of my transplants.

Check out Transplantbuddies. org and write to us there. We have lots of smart people who might give you more suggestions.

 

[EnergyGal]

What state do you live in? What is the nearest transplant center other than the one you are at now? I would not get to angry with your center. It sounds like they are looking out for your daughter and they are being honest. Perhaps your daughters health has declined and they want you to get her lungs quicker somewhere else?

Are they still willing to transplant her at your current center? If so, it does not hurt to go to another center. If she is currently listed then she will probably be number one in both places. I was listed at three centers for one of my transplants.

Check out Transplantbuddies. org and write to us there. We have lots of smart people who might give you more suggestions.

 

[EnergyGal]

What state do you live in? What is the nearest transplant center other than the one you are at now? I would not get to angry with your center. It sounds like they are looking out for your daughter and they are being honest. Perhaps your daughters health has declined and they want you to get her lungs quicker somewhere else?

Are they still willing to transplant her at your current center? If so, it does not hurt to go to another center. If she is currently listed then she will probably be number one in both places. I was listed at three centers for one of my transplants.

Check out Transplantbuddies. org and write to us there. We have lots of smart people who might give you more suggestions.

 

[madisonsmom]

Risa

thanks for responding. to answer your question about the current facility transplanting her, I think the answer is no. I do believe that her pulmonologist is trying to give us sound advice about going to another facility, as I think she feels that the #'s at the childrens hospital are too low and Madison needs a place with more experience. My anger stems from the fact that for the last year my daughters health has been very bad and in the last month I am told to come up with another transplant facility. This should have been communicated to me along time ago. Now she's so sick that a move is not possible and she can't go alone.

There are 2 issues, the 1st as stated above. The second being that recently my daughter was transitioned to the Adult CF care hospital, her pulm MD is the same.She was listed at the childrens hospital.
There is supposed to be interdiciplinary care delivered at hosptials that care for CF pts, this is accordinfg to the CFF. We have not seen any dieticians, socialworker( that might help with this transplant issues) and the staff is not familiar with the needs of a CF patient. I have asked that she continue to receive care at the childrens hospital and have been told bluntly , "no." I have pointed out the care issues and basically this falls on deaf ears. I think they tryed to open a CF care center without having adequate resources available.

I will go to the transplant buddys website. Thanks again

 

[madisonsmom]

Risa

thanks for responding. to answer your question about the current facility transplanting her, I think the answer is no. I do believe that her pulmonologist is trying to give us sound advice about going to another facility, as I think she feels that the #'s at the childrens hospital are too low and Madison needs a place with more experience. My anger stems from the fact that for the last year my daughters health has been very bad and in the last month I am told to come up with another transplant facility. This should have been communicated to me along time ago. Now she's so sick that a move is not possible and she can't go alone.

There are 2 issues, the 1st as stated above. The second being that recently my daughter was transitioned to the Adult CF care hospital, her pulm MD is the same.She was listed at the childrens hospital.
There is supposed to be interdiciplinary care delivered at hosptials that care for CF pts, this is accordinfg to the CFF. We have not seen any dieticians, socialworker( that might help with this transplant issues) and the staff is not familiar with the needs of a CF patient. I have asked that she continue to receive care at the childrens hospital and have been told bluntly , "no." I have pointed out the care issues and basically this falls on deaf ears. I think they tryed to open a CF care center without having adequate resources available.

I will go to the transplant buddys website. Thanks again

 

[madisonsmom]

Risa

thanks for responding. to answer your question about the current facility transplanting her, I think the answer is no. I do believe that her pulmonologist is trying to give us sound advice about going to another facility, as I think she feels that the #'s at the childrens hospital are too low and Madison needs a place with more experience. My anger stems from the fact that for the last year my daughters health has been very bad and in the last month I am told to come up with another transplant facility. This should have been communicated to me along time ago. Now she's so sick that a move is not possible and she can't go alone.

There are 2 issues, the 1st as stated above. The second being that recently my daughter was transitioned to the Adult CF care hospital, her pulm MD is the same.She was listed at the childrens hospital.
There is supposed to be interdiciplinary care delivered at hosptials that care for CF pts, this is accordinfg to the CFF. We have not seen any dieticians, socialworker( that might help with this transplant issues) and the staff is not familiar with the needs of a CF patient. I have asked that she continue to receive care at the childrens hospital and have been told bluntly , "no." I have pointed out the care issues and basically this falls on deaf ears. I think they tryed to open a CF care center without having adequate resources available.

I will go to the transplant buddys website. Thanks again

 

[Joanne]

Madisons Mom,

Reading your story is so sad.

What center is she trying to get into? Where do you live?
There are so many centers, that there must be one that could fit your needs.

You say she is so sick she cannot travel to another center. Is she on a vent?
If she is not on a vent, there must be some way to get her to another center.

Often, what seems impossible is not. By talking to others, talking to relatives and friends, church members, co workers, you find this is a small world and there are so many people who want to help.

I live in NY state and moved 700 miles for my tx. I bypassed at least 8 other centers to get to the one I felt was the best for CF - UNC. When I was first looking into tx, the whole move thing seemed so overwhelming and impossible. Who would go with me? How could I afford it? How do you do this? Well, things kept moving along and beneift was given for me to raise the money for the move and housing. I had so many offers of people who wanted to go with me. It was my boyfriend and oldest sister who moved with me. Then had other family members visiting for a month or two to give breaks to the others. I never dreamed this would be such a "in demand" proposition, but people want to help and this is what they do.

If you want to email me privately, we can talk too.
Joanne Schum
luckylungsforjo@aol.com

 

[Joanne]

Madisons Mom,

Reading your story is so sad.

What center is she trying to get into? Where do you live?
There are so many centers, that there must be one that could fit your needs.

You say she is so sick she cannot travel to another center. Is she on a vent?
If she is not on a vent, there must be some way to get her to another center.

Often, what seems impossible is not. By talking to others, talking to relatives and friends, church members, co workers, you find this is a small world and there are so many people who want to help.

I live in NY state and moved 700 miles for my tx. I bypassed at least 8 other centers to get to the one I felt was the best for CF - UNC. When I was first looking into tx, the whole move thing seemed so overwhelming and impossible. Who would go with me? How could I afford it? How do you do this? Well, things kept moving along and beneift was given for me to raise the money for the move and housing. I had so many offers of people who wanted to go with me. It was my boyfriend and oldest sister who moved with me. Then had other family members visiting for a month or two to give breaks to the others. I never dreamed this would be such a "in demand" proposition, but people want to help and this is what they do.

If you want to email me privately, we can talk too.
Joanne Schum
luckylungsforjo@aol.com

 

[Joanne]

Madisons Mom,

Reading your story is so sad.

What center is she trying to get into? Where do you live?
There are so many centers, that there must be one that could fit your needs.

You say she is so sick she cannot travel to another center. Is she on a vent?
If she is not on a vent, there must be some way to get her to another center.

Often, what seems impossible is not. By talking to others, talking to relatives and friends, church members, co workers, you find this is a small world and there are so many people who want to help.

I live in NY state and moved 700 miles for my tx. I bypassed at least 8 other centers to get to the one I felt was the best for CF - UNC. When I was first looking into tx, the whole move thing seemed so overwhelming and impossible. Who would go with me? How could I afford it? How do you do this? Well, things kept moving along and beneift was given for me to raise the money for the move and housing. I had so many offers of people who wanted to go with me. It was my boyfriend and oldest sister who moved with me. Then had other family members visiting for a month or two to give breaks to the others. I never dreamed this would be such a "in demand" proposition, but people want to help and this is what they do.

If you want to email me privately, we can talk too.
Joanne Schum
luckylungsforjo@aol.com

 

[madisonsmom]

Joanne,
Thankyou also for responding, I REALLY do apprieciate it. I'm sure you can hear my frustration, and it's nice to feel that someone is listening. I'm actually so exausted from the stress of this situation and feeling that we have been somewhat abondoned by or healthcare system.

I don't want to share any logistical info for obvious reasons. I can do that in private. I just wish I had listened to our old pulmonologist who left this group of physicians at this hospital 4-5 yr ago as he felt there was no accountability.

To answer your question about a vent: no she is not, she can't stay off IVabx for <img src="i/expressions/brokenheart.gif" border="0">re than 1-2 weeks and she decopenstes very quickly. Trying to plan a move on my own with her so sick seems insurmountable. I do have a husband he works 1-2 hrs away and is gone M-F. I have parent in there mid 70's that live 1000 miles away. One hope I have is that I have an uncle in Pitsburg who is an MD and wants to open his house nto us, however he has his own health issues.I work fulltime and have demanding job and have a hard time letting them know how hard it has become. I think I somewhat thrive on the intensivity of my job to help divert myself from facing what we have to face.

 

[madisonsmom]

Joanne,
Thankyou also for responding, I REALLY do apprieciate it. I'm sure you can hear my frustration, and it's nice to feel that someone is listening. I'm actually so exausted from the stress of this situation and feeling that we have been somewhat abondoned by or healthcare system.

I don't want to share any logistical info for obvious reasons. I can do that in private. I just wish I had listened to our old pulmonologist who left this group of physicians at this hospital 4-5 yr ago as he felt there was no accountability.

To answer your question about a vent: no she is not, she can't stay off IVabx for <img src="i/expressions/brokenheart.gif" border="0">re than 1-2 weeks and she decopenstes very quickly. Trying to plan a move on my own with her so sick seems insurmountable. I do have a husband he works 1-2 hrs away and is gone M-F. I have parent in there mid 70's that live 1000 miles away. One hope I have is that I have an uncle in Pitsburg who is an MD and wants to open his house nto us, however he has his own health issues.I work fulltime and have demanding job and have a hard time letting them know how hard it has become. I think I somewhat thrive on the intensivity of my job to help divert myself from facing what we have to face.

 

[madisonsmom]

Joanne,
Thankyou also for responding, I REALLY do apprieciate it. I'm sure you can hear my frustration, and it's nice to feel that someone is listening. I'm actually so exausted from the stress of this situation and feeling that we have been somewhat abondoned by or healthcare system.

I don't want to share any logistical info for obvious reasons. I can do that in private. I just wish I had listened to our old pulmonologist who left this group of physicians at this hospital 4-5 yr ago as he felt there was no accountability.

To answer your question about a vent: no she is not, she can't stay off IVabx for <img src="i/expressions/brokenheart.gif" border="0">re than 1-2 weeks and she decopenstes very quickly. Trying to plan a move on my own with her so sick seems insurmountable. I do have a husband he works 1-2 hrs away and is gone M-F. I have parent in there mid 70's that live 1000 miles away. One hope I have is that I have an uncle in Pitsburg who is an MD and wants to open his house nto us, however he has his own health issues.I work fulltime and have demanding job and have a hard time letting them know how hard it has become. I think I somewhat thrive on the intensivity of my job to help divert myself from facing what we have to face.

 

[EnergyGal]

I wish both the best. If someone offered me a place to stay, I would go. That is easier said than done. You can raise money from friends and family through the National transplant Assitance Fund <a target=_blank class=ftalternatingbarlinklarge href="http://transplantfund.org">http://transplantfund.org</a> that can help to pay for additional expenses such as food and housing and medical bills.

Perhaps you can find affordable housing or perhaps the center that you choose has housing nearby the center?

 

[EnergyGal]

I wish both the best. If someone offered me a place to stay, I would go. That is easier said than done. You can raise money from friends and family through the National transplant Assitance Fund <a target=_blank class=ftalternatingbarlinklarge href="http://transplantfund.org">http://transplantfund.org</a> that can help to pay for additional expenses such as food and housing and medical bills.

Perhaps you can find affordable housing or perhaps the center that you choose has housing nearby the center?

 

[EnergyGal]

I wish both the best. If someone offered me a place to stay, I would go. That is easier said than done. You can raise money from friends and family through the National transplant Assitance Fund <a target=_blank class=ftalternatingbarlinklarge href="http://transplantfund.org">http://transplantfund.org</a> that can help to pay for additional expenses such as food and housing and medical bills.

Perhaps you can find affordable housing or perhaps the center that you choose has housing nearby the center?

 

[Liza]

Hi Kathy, I'm sorry I have not replied sooner. I have been having some trouble getting onto the site the last couple of days. We live in an area that only has the option of dial-up (which moves slower than molasses) or satellite type service (which costs too much). My daughter just called me up from the hospital (yes, here we go again) and asked me when was the last time I'd logged on. So much has happened since I last checked the forums.

It's amazing how similar our girls' issues are and Kybert's too. Well Anna is back in, she started feeling badly Christmas week and she really didn't want to go see the CF doc here or into the hospital here. She had an occassional day that she didn't feel completely horrible and we were hoping she'd be able to hang in there until just after the new year so we could get her back to NE. My husband took her back on the 30th and she went in to the ER on the 1st. What a first day to the new year. Rachel (my other daughter) had an appt. herself so I couldn't go and stay with her. We had it coming both ways. But Anna wanted her docs at UNMC and we really couldn't blame her nor deny her. She loves them and she feels comfortable with them. She made sure to have them send all test info especially pft's to her transplant center. Her fev1 was 21.5 last Wednesday, today it was up to 24.5. Apparently her transplant center said there probably wouldn't be any change in their decision unless she didn't bounce back. Bounce back to what? The low 40's? They surely don't stay there for long. You know what I mean, a week or so then she starts declining once again. It's horrible when you entertain the thought that maybe it would be better if she didn't bounce too far back just so they'd list her.

Like Madison, I think she seems like she's been beat. Kybert, I know it's not me bouncing up and down but I can't help but hope that, this one might be the one that keeps her out, but I feel sometimes like she doesn't have that hope anymore. Anna I think tries to have a positive outlook but sometimes she seems like she's been beat, down. I think because nothing seems to be working anymore. This has been going on since July 2005. And it wasn't gradual either, it was all of a sudden. But still she isn't on oxygen 24hr's just at night. We have a o2 sat meter, the portable finger one, here at home and have been watching it and she's usually around 95-96 during the day. I totally agree with the quality of life thing there Kybert. If you are only "surviving" IV to IV, then something needs to be done. Now she's having trouble sleeping, getting to sleep, staying asleep. Anyone else have that problem?

I just mentioned to Anna today that we'll see what they say at her tranplant eval. follow-up on March 1st, and that if they still don't think she is sick enough to list then we may need to try and get a evaluation at another center. Hopefully the insurance co. will cover it again.

Kathy, I don't understand why your daughter's center insists that she be followed in the adult clinic. Is the adult clinic in the children's hospital too? At Anna's CF center, they try to start the transition to adult clinic over a few years not instantly. I think they ease into it from age 19 to 21. But we've been told that if they insist on staying the the peds clinic that it usually isn't a problem. Anna is still seen in the peds clinic.

She was told by her CF doc here that he didn't think she was ready yet all last year when she asked him about it. He just seemed to really think he could pull her out of this. But even after 6 hospitalizations in as many months he only said that she could start thinking about starting the process. Her docs back in NE were much more receptive to the idea and agreed it was a good idea to get started even if she bounced back and stayed up. That was back in August.

Kathy, keep me, us, posted with Madision's progress. I had often wondered if anyone else was constantly in and out, off and on IV antibiotics or if it was just Anna. It surely seems if Madison is the only one on the transplant list then surely they should activate her. I didn't realize they make people inactive anymore since the change of the system. Especially if they don't share their procurement area with any other transplant center.

 

[Liza]

Hi Kathy, I'm sorry I have not replied sooner. I have been having some trouble getting onto the site the last couple of days. We live in an area that only has the option of dial-up (which moves slower than molasses) or satellite type service (which costs too much). My daughter just called me up from the hospital (yes, here we go again) and asked me when was the last time I'd logged on. So much has happened since I last checked the forums.

It's amazing how similar our girls' issues are and Kybert's too. Well Anna is back in, she started feeling badly Christmas week and she really didn't want to go see the CF doc here or into the hospital here. She had an occassional day that she didn't feel completely horrible and we were hoping she'd be able to hang in there until just after the new year so we could get her back to NE. My husband took her back on the 30th and she went in to the ER on the 1st. What a first day to the new year. Rachel (my other daughter) had an appt. herself so I couldn't go and stay with her. We had it coming both ways. But Anna wanted her docs at UNMC and we really couldn't blame her nor deny her. She loves them and she feels comfortable with them. She made sure to have them send all test info especially pft's to her transplant center. Her fev1 was 21.5 last Wednesday, today it was up to 24.5. Apparently her transplant center said there probably wouldn't be any change in their decision unless she didn't bounce back. Bounce back to what? The low 40's? They surely don't stay there for long. You know what I mean, a week or so then she starts declining once again. It's horrible when you entertain the thought that maybe it would be better if she didn't bounce too far back just so they'd list her.

Like Madison, I think she seems like she's been beat. Kybert, I know it's not me bouncing up and down but I can't help but hope that, this one might be the one that keeps her out, but I feel sometimes like she doesn't have that hope anymore. Anna I think tries to have a positive outlook but sometimes she seems like she's been beat, down. I think because nothing seems to be working anymore. This has been going on since July 2005. And it wasn't gradual either, it was all of a sudden. But still she isn't on oxygen 24hr's just at night. We have a o2 sat meter, the portable finger one, here at home and have been watching it and she's usually around 95-96 during the day. I totally agree with the quality of life thing there Kybert. If you are only "surviving" IV to IV, then something needs to be done. Now she's having trouble sleeping, getting to sleep, staying asleep. Anyone else have that problem?

I just mentioned to Anna today that we'll see what they say at her tranplant eval. follow-up on March 1st, and that if they still don't think she is sick enough to list then we may need to try and get a evaluation at another center. Hopefully the insurance co. will cover it again.

Kathy, I don't understand why your daughter's center insists that she be followed in the adult clinic. Is the adult clinic in the children's hospital too? At Anna's CF center, they try to start the transition to adult clinic over a few years not instantly. I think they ease into it from age 19 to 21. But we've been told that if they insist on staying the the peds clinic that it usually isn't a problem. Anna is still seen in the peds clinic.

She was told by her CF doc here that he didn't think she was ready yet all last year when she asked him about it. He just seemed to really think he could pull her out of this. But even after 6 hospitalizations in as many months he only said that she could start thinking about starting the process. Her docs back in NE were much more receptive to the idea and agreed it was a good idea to get started even if she bounced back and stayed up. That was back in August.

Kathy, keep me, us, posted with Madision's progress. I had often wondered if anyone else was constantly in and out, off and on IV antibiotics or if it was just Anna. It surely seems if Madison is the only one on the transplant list then surely they should activate her. I didn't realize they make people inactive anymore since the change of the system. Especially if they don't share their procurement area with any other transplant center.

 

[Liza]

Hi Kathy, I'm sorry I have not replied sooner. I have been having some trouble getting onto the site the last couple of days. We live in an area that only has the option of dial-up (which moves slower than molasses) or satellite type service (which costs too much). My daughter just called me up from the hospital (yes, here we go again) and asked me when was the last time I'd logged on. So much has happened since I last checked the forums.

It's amazing how similar our girls' issues are and Kybert's too. Well Anna is back in, she started feeling badly Christmas week and she really didn't want to go see the CF doc here or into the hospital here. She had an occassional day that she didn't feel completely horrible and we were hoping she'd be able to hang in there until just after the new year so we could get her back to NE. My husband took her back on the 30th and she went in to the ER on the 1st. What a first day to the new year. Rachel (my other daughter) had an appt. herself so I couldn't go and stay with her. We had it coming both ways. But Anna wanted her docs at UNMC and we really couldn't blame her nor deny her. She loves them and she feels comfortable with them. She made sure to have them send all test info especially pft's to her transplant center. Her fev1 was 21.5 last Wednesday, today it was up to 24.5. Apparently her transplant center said there probably wouldn't be any change in their decision unless she didn't bounce back. Bounce back to what? The low 40's? They surely don't stay there for long. You know what I mean, a week or so then she starts declining once again. It's horrible when you entertain the thought that maybe it would be better if she didn't bounce too far back just so they'd list her.

Like Madison, I think she seems like she's been beat. Kybert, I know it's not me bouncing up and down but I can't help but hope that, this one might be the one that keeps her out, but I feel sometimes like she doesn't have that hope anymore. Anna I think tries to have a positive outlook but sometimes she seems like she's been beat, down. I think because nothing seems to be working anymore. This has been going on since July 2005. And it wasn't gradual either, it was all of a sudden. But still she isn't on oxygen 24hr's just at night. We have a o2 sat meter, the portable finger one, here at home and have been watching it and she's usually around 95-96 during the day. I totally agree with the quality of life thing there Kybert. If you are only "surviving" IV to IV, then something needs to be done. Now she's having trouble sleeping, getting to sleep, staying asleep. Anyone else have that problem?

I just mentioned to Anna today that we'll see what they say at her tranplant eval. follow-up on March 1st, and that if they still don't think she is sick enough to list then we may need to try and get a evaluation at another center. Hopefully the insurance co. will cover it again.

Kathy, I don't understand why your daughter's center insists that she be followed in the adult clinic. Is the adult clinic in the children's hospital too? At Anna's CF center, they try to start the transition to adult clinic over a few years not instantly. I think they ease into it from age 19 to 21. But we've been told that if they insist on staying the the peds clinic that it usually isn't a problem. Anna is still seen in the peds clinic.

She was told by her CF doc here that he didn't think she was ready yet all last year when she asked him about it. He just seemed to really think he could pull her out of this. But even after 6 hospitalizations in as many months he only said that she could start thinking about starting the process. Her docs back in NE were much more receptive to the idea and agreed it was a good idea to get started even if she bounced back and stayed up. That was back in August.

Kathy, keep me, us, posted with Madision's progress. I had often wondered if anyone else was constantly in and out, off and on IV antibiotics or if it was just Anna. It surely seems if Madison is the only one on the transplant list then surely they should activate her. I didn't realize they make people inactive anymore since the change of the system. Especially if they don't share their procurement area with any other transplant center.