We're back from evaluation

TwistedTanya · Apr 1, 2007

Liza,
I know how frustrating the school situation is. It took me 7 years to get a 2 year degree due to hospitalizations and sickness. Towards the end when I was doing worse and my FEV1 dropped into the 30's, I couldn't handle taking more than one class a semester. Even then I had to withdrawl a few times. It took me a long time but I am glad I stuck with it. Some schools offer online classes that can make things a lot easier. I have also had some teachers give me extra time to complete my work when they knew I had to spend a few weeks in the hospital.
As far as her doctor goes, it can make a big difference in her health between having a good one or a bad one. I was never too happy with the care I got at the CF clinic I used to go to and then when I went into the hospital and was really sick, things got worse and worse and my experience was horrible. Luckily I was planning on moving and would start seeing a new doctor. My new doctor is absolutely amazing! I wish I had know this a long time ago. I would have done the hour and half drive to see him b/c the care I got would have been worth it. I have a new hope in myhealth now. I think having a good CF doctor is crucial to any CFers health. I say, try your best to go somewhere better! I wish you the best!

TwistedTanya · Apr 1, 2007

Liza,
I know how frustrating the school situation is. It took me 7 years to get a 2 year degree due to hospitalizations and sickness. Towards the end when I was doing worse and my FEV1 dropped into the 30's, I couldn't handle taking more than one class a semester. Even then I had to withdrawl a few times. It took me a long time but I am glad I stuck with it. Some schools offer online classes that can make things a lot easier. I have also had some teachers give me extra time to complete my work when they knew I had to spend a few weeks in the hospital.
As far as her doctor goes, it can make a big difference in her health between having a good one or a bad one. I was never too happy with the care I got at the CF clinic I used to go to and then when I went into the hospital and was really sick, things got worse and worse and my experience was horrible. Luckily I was planning on moving and would start seeing a new doctor. My new doctor is absolutely amazing! I wish I had know this a long time ago. I would have done the hour and half drive to see him b/c the care I got would have been worth it. I have a new hope in myhealth now. I think having a good CF doctor is crucial to any CFers health. I say, try your best to go somewhere better! I wish you the best!

TwistedTanya · Apr 1, 2007

Liza,
I know how frustrating the school situation is. It took me 7 years to get a 2 year degree due to hospitalizations and sickness. Towards the end when I was doing worse and my FEV1 dropped into the 30's, I couldn't handle taking more than one class a semester. Even then I had to withdrawl a few times. It took me a long time but I am glad I stuck with it. Some schools offer online classes that can make things a lot easier. I have also had some teachers give me extra time to complete my work when they knew I had to spend a few weeks in the hospital.
As far as her doctor goes, it can make a big difference in her health between having a good one or a bad one. I was never too happy with the care I got at the CF clinic I used to go to and then when I went into the hospital and was really sick, things got worse and worse and my experience was horrible. Luckily I was planning on moving and would start seeing a new doctor. My new doctor is absolutely amazing! I wish I had know this a long time ago. I would have done the hour and half drive to see him b/c the care I got would have been worth it. I have a new hope in myhealth now. I think having a good CF doctor is crucial to any CFers health. I say, try your best to go somewhere better! I wish you the best!

mackenziesmom · Jun 18, 2008

Liza,
I'm relatively new to his site and I can't seem to figure out how to post the question I have. My son will be listed for a transplant soon and our insurance company has stopped covering the Vitamin K he needs. I'm appealing the decision. I've had the doctor write letters but I'm down to my last appeal. Do you and does anyone reading this have any advice for dealing with insurance coverage regarding Vitamin K? They have always paid for it up until this year. My final appeal is with my husband's company (American Airlines. They claim to be big supporters of the CF Foundation but apparently don't want to help employees who have kids with CF.
joan

mackenziesmom · Jun 18, 2008

Liza,
I'm relatively new to his site and I can't seem to figure out how to post the question I have. My son will be listed for a transplant soon and our insurance company has stopped covering the Vitamin K he needs. I'm appealing the decision. I've had the doctor write letters but I'm down to my last appeal. Do you and does anyone reading this have any advice for dealing with insurance coverage regarding Vitamin K? They have always paid for it up until this year. My final appeal is with my husband's company (American Airlines. They claim to be big supporters of the CF Foundation but apparently don't want to help employees who have kids with CF.
joan

mackenziesmom · Jun 18, 2008

Liza,
I'm relatively new to his site and I can't seem to figure out how to post the question I have. My son will be listed for a transplant soon and our insurance company has stopped covering the Vitamin K he needs. I'm appealing the decision. I've had the doctor write letters but I'm down to my last appeal. Do you and does anyone reading this have any advice for dealing with insurance coverage regarding Vitamin K? They have always paid for it up until this year. My final appeal is with my husband's company (American Airlines. They claim to be big supporters of the CF Foundation but apparently don't want to help employees who have kids with CF.
joan

mackenziesmom · Jun 18, 2008

Liza,
I'm relatively new to his site and I can't seem to figure out how to post the question I have. My son will be listed for a transplant soon and our insurance company has stopped covering the Vitamin K he needs. I'm appealing the decision. I've had the doctor write letters but I'm down to my last appeal. Do you and does anyone reading this have any advice for dealing with insurance coverage regarding Vitamin K? They have always paid for it up until this year. My final appeal is with my husband's company (American Airlines. They claim to be big supporters of the CF Foundation but apparently don't want to help employees who have kids with CF.
joan

mackenziesmom · Jun 18, 2008

Liza,
 I'm relatively new to his site and I can't seem to figure out how to post the question I have. My son will be listed for a transplant soon and our insurance company has stopped covering the Vitamin K he needs. I'm appealing the decision. I've had the doctor write letters but I'm down to my last appeal. Do you and does anyone reading this have any advice for dealing with insurance coverage regarding Vitamin K? They have always paid for it up until this year. My final appeal is with my husband's company (American Airlines. They claim to be big supporters of the CF Foundation but apparently don't want to help employees who have kids with CF.
 joan

Liza · Jun 22, 2008

Hi Joan, I'm sorry I haven't relpied quicker. We have been so busy this month with graduations and now, finally a bit of vacation.

I haven't had the ins. co deny covering Vit. K. I should say, YET. although they don't cover most vitamins, like E, Source CF or ADEK, calcium, iron (I know it's a mineral)or magnesium (also a mineral, I know). I have argued with them about the magnesium and I just get the same run around and I gave up. Luckily it's not that expensive. All I get is that it's not on the formulary or that vitamins and minerals are considered supplements and are not covered.

Try posting this question in the adults section. There may be someone on there that has experienced the same problem or fought the insurance co. and gotten results.

Has your son been listed for transplant or received a transplant? Just wondering.

Sorry I couldn't be of any help. I hope you can win this one without too much of a fight.

Liza · Jun 22, 2008

Hi Joan, I'm sorry I haven't relpied quicker. We have been so busy this month with graduations and now, finally a bit of vacation.

I haven't had the ins. co deny covering Vit. K. I should say, YET. although they don't cover most vitamins, like E, Source CF or ADEK, calcium, iron (I know it's a mineral)or magnesium (also a mineral, I know). I have argued with them about the magnesium and I just get the same run around and I gave up. Luckily it's not that expensive. All I get is that it's not on the formulary or that vitamins and minerals are considered supplements and are not covered.

Try posting this question in the adults section. There may be someone on there that has experienced the same problem or fought the insurance co. and gotten results.

Has your son been listed for transplant or received a transplant? Just wondering.

Sorry I couldn't be of any help. I hope you can win this one without too much of a fight.

Liza · Jun 22, 2008

Hi Joan, I'm sorry I haven't relpied quicker. We have been so busy this month with graduations and now, finally a bit of vacation.

I haven't had the ins. co deny covering Vit. K. I should say, YET. although they don't cover most vitamins, like E, Source CF or ADEK, calcium, iron (I know it's a mineral)or magnesium (also a mineral, I know). I have argued with them about the magnesium and I just get the same run around and I gave up. Luckily it's not that expensive. All I get is that it's not on the formulary or that vitamins and minerals are considered supplements and are not covered.

Try posting this question in the adults section. There may be someone on there that has experienced the same problem or fought the insurance co. and gotten results.

Has your son been listed for transplant or received a transplant? Just wondering.

Sorry I couldn't be of any help. I hope you can win this one without too much of a fight.

Liza · Jun 22, 2008

Hi Joan, I'm sorry I haven't relpied quicker. We have been so busy this month with graduations and now, finally a bit of vacation.

I haven't had the ins. co deny covering Vit. K. I should say, YET. although they don't cover most vitamins, like E, Source CF or ADEK, calcium, iron (I know it's a mineral)or magnesium (also a mineral, I know). I have argued with them about the magnesium and I just get the same run around and I gave up. Luckily it's not that expensive. All I get is that it's not on the formulary or that vitamins and minerals are considered supplements and are not covered.

Try posting this question in the adults section. There may be someone on there that has experienced the same problem or fought the insurance co. and gotten results.

Has your son been listed for transplant or received a transplant? Just wondering.

Sorry I couldn't be of any help. I hope you can win this one without too much of a fight.

Liza · Jun 22, 2008

Hi Joan, I'm sorry I haven't relpied quicker. We have been so busy this month with graduations and now, finally a bit of vacation.
 
 I haven't had the ins. co deny covering Vit. K. I should say, YET. although they don't cover most vitamins, like E, Source CF or ADEK, calcium, iron (I know it's a mineral)or magnesium (also a mineral, I know). I have argued with them about the magnesium and I just get the same run around and I gave up. Luckily it's not that expensive. All I get is that it's not on the formulary or that vitamins and minerals are considered supplements and are not covered.
 
 Try posting this question in the adults section. There may be someone on there that has experienced the same problem or fought the insurance co. and gotten results.
 
 Has your son been listed for transplant or received a transplant? Just wondering.
 
 Sorry I couldn't be of any help. I hope you can win this one without too much of a fight.

lifefortanya · Jan 9, 2009

I really feel for your and your concerns. My daughter is 30 years old, and we have gone through an evaluation in St. Louis several years ago when she was younger, and they did not think she was readdy then, but she thought it was the best place since the statistics of success was better. She is now seeing the clinic at Tampa hospital and her doctor is trying to talk her into a transplant soon due to her low stats, which is in the high 20s. the problem is that she is feeling good on most days, and only has to had 02 at night. She is also participating in a trial which every other month she feels better. She and I do not know when to decide when the right time is to get a transplant. It is a delima, especially due to the risks, and the effects after transplant of living with diabetes, and prednizone the rest of her life. Do you have any ideas or suggestions?

lifefortanya · Jan 9, 2009

I really feel for your and your concerns. My daughter is 30 years old, and we have gone through an evaluation in St. Louis several years ago when she was younger, and they did not think she was readdy then, but she thought it was the best place since the statistics of success was better. She is now seeing the clinic at Tampa hospital and her doctor is trying to talk her into a transplant soon due to her low stats, which is in the high 20s. the problem is that she is feeling good on most days, and only has to had 02 at night. She is also participating in a trial which every other month she feels better. She and I do not know when to decide when the right time is to get a transplant. It is a delima, especially due to the risks, and the effects after transplant of living with diabetes, and prednizone the rest of her life. Do you have any ideas or suggestions?

lifefortanya · Jan 9, 2009

I really feel for your and your concerns. My daughter is 30 years old, and we have gone through an evaluation in St. Louis several years ago when she was younger, and they did not think she was readdy then, but she thought it was the best place since the statistics of success was better. She is now seeing the clinic at Tampa hospital and her doctor is trying to talk her into a transplant soon due to her low stats, which is in the high 20s. the problem is that she is feeling good on most days, and only has to had 02 at night. She is also participating in a trial which every other month she feels better. She and I do not know when to decide when the right time is to get a transplant. It is a delima, especially due to the risks, and the effects after transplant of living with diabetes, and prednizone the rest of her life. Do you have any ideas or suggestions?

lifefortanya · Jan 9, 2009

I really feel for your and your concerns. My daughter is 30 years old, and we have gone through an evaluation in St. Louis several years ago when she was younger, and they did not think she was readdy then, but she thought it was the best place since the statistics of success was better. She is now seeing the clinic at Tampa hospital and her doctor is trying to talk her into a transplant soon due to her low stats, which is in the high 20s. the problem is that she is feeling good on most days, and only has to had 02 at night. She is also participating in a trial which every other month she feels better. She and I do not know when to decide when the right time is to get a transplant. It is a delima, especially due to the risks, and the effects after transplant of living with diabetes, and prednizone the rest of her life. Do you have any ideas or suggestions?

lifefortanya · Jan 9, 2009

I really feel for your and your concerns. My daughter is 30 years old, and we have gone through an evaluation in St. Louis several years ago when she was younger, and they did not think she was readdy then, but she thought it was the best place since the statistics of success was better. She is now seeing the clinic at Tampa hospital and her doctor is trying to talk her into a transplant soon due to her low stats, which is in the high 20s. the problem is that she is feeling good on most days, and only has to had 02 at night. She is also participating in a trial which every other month she feels better. She and I do not know when to decide when the right time is to get a transplant. It is a delima, especially due to the risks, and the effects after transplant of living with diabetes, and prednizone the rest of her life. Do you have any ideas or suggestions?

Liza · Jan 11, 2009

Hi, Transplant is such a difficult decision. Anna was ready. She told us. She'd had a difficult first semester at college and couldn't complete it due to repeated hospitalizations before Thanksgiving. She tried again the following fall and the same thing happened. Her quality of life was definantely down. She pretty much had bad days and not so bad days. She was only on oxygen at night that second year. She tried, she really did. She'd get IV antibiotics for three weeks, get done and usually before the 6wk follow-up she'd be back in feeling badly and end up right back on them. It didn't matter whether she was at home with us or away at school. Her pfts were anywhere from 32 - 42 depending on how recent her antibiotics. When they decided she was ready, it was just about two months from her eval. when they said she wasn't ready yet. This time her pfts wouldn't come up any higher than 27.

Anna saw her old lungs and we found out the pathologist had commented "how was this girl breathing?" It was definantely time. She was ready and just wanted some new lungs in the months before she was listed.

If your daughter doesn't feel she is ready, then don't let the doctors pressure her. But she does need to consider how long their wait time avg. is. How long has she had such low pfts? What is her activity level? You say she feels good most days or every other month. Does she get to do most everything she wants to do in her daily life? There are many questions they will ask, not just look at her tests. I think only she can know when she is ready to be listed.

As for diabetes, most people get it post tx but not all. Anna was CFrD so it didn't matter.

I wish you all the luck. I don't think I offered much suggestion wise, sorry.

Liza · Jan 11, 2009

Hi, Transplant is such a difficult decision. Anna was ready. She told us. She'd had a difficult first semester at college and couldn't complete it due to repeated hospitalizations before Thanksgiving. She tried again the following fall and the same thing happened. Her quality of life was definantely down. She pretty much had bad days and not so bad days. She was only on oxygen at night that second year. She tried, she really did. She'd get IV antibiotics for three weeks, get done and usually before the 6wk follow-up she'd be back in feeling badly and end up right back on them. It didn't matter whether she was at home with us or away at school. Her pfts were anywhere from 32 - 42 depending on how recent her antibiotics. When they decided she was ready, it was just about two months from her eval. when they said she wasn't ready yet. This time her pfts wouldn't come up any higher than 27.

Anna saw her old lungs and we found out the pathologist had commented "how was this girl breathing?" It was definantely time. She was ready and just wanted some new lungs in the months before she was listed.

If your daughter doesn't feel she is ready, then don't let the doctors pressure her. But she does need to consider how long their wait time avg. is. How long has she had such low pfts? What is her activity level? You say she feels good most days or every other month. Does she get to do most everything she wants to do in her daily life? There are many questions they will ask, not just look at her tests. I think only she can know when she is ready to be listed.

As for diabetes, most people get it post tx but not all. Anna was CFrD so it didn't matter.

I wish you all the luck. I don't think I offered much suggestion wise, sorry.

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