We're back from evaluation

K

kybert

New member
im doing ok. yep, this is an up week, horah! my doc held off iv's because of tobramycin issues and put me on oral cipro and it has worked for once. i managed to go for a walk at the beach today! just crossing my fingers that i will stay ok for a while [which would be the first time in a long time!]. the name kybert is a mix of kylie and dogbert. back in the good ole days of mIRC my nickanme was dogbert. kind of morphed into kybert when the name dogbert was already taken on things like livejournal.

i hope you can get that appointment moved forward. and wifi in the hospital? woah! my hospital hasnt embraced any technology thats made after 1990 rofl! [thats not a joke either.... <img src="i/expressions/face-icon-small-sad.gif" border="0"> ]
 
M

madisonsmom

New member
Kylie,
I bet awalk on the beach felt good, so glad to hear you were able to go. Do tyou live near an ocean beach ? If so, does, the salt air thing help you? I know for years ( even before the study) we always noted that when we crossed a bay bridge to the ocean condo where we stay, that maddy would start coughing and it would continue for a day. It was massive coughing with alot of junk coming up. At first it scared us. Then it would go away and she would do well for the rest of her vacation. A swim in the ocean always helped her sinus problems too. Our ENT doc always said stay away from pools and lakes, if you want to swim go to the ocean.

I'm also glad cipro is working.We have had that happen, the psuedomonas is resistant to it so you stop for awhile and then when you go back on it seems to become sensitive again. Our MD is good about re-trying the oral antibiotics that stop working,we all much prefer the oral.

What does mIRC stand for? My daughter's BF's name is Bert, short for Robert. His mom did'nt want him called Bob so his Dad started to call him Bert.

Hope you continue to feel well....... a walk on the beach sounds so good right now.Here in the frozen tundra of Wi. we won'tbe doing that for a while, and when we can, the beachs of Lake Michigan, are just not the same. That's coming from a person that grew up near the ocean, though.
take care,
kathy
 
M

madisonsmom

New member
Kylie,
I bet awalk on the beach felt good, so glad to hear you were able to go. Do tyou live near an ocean beach ? If so, does, the salt air thing help you? I know for years ( even before the study) we always noted that when we crossed a bay bridge to the ocean condo where we stay, that maddy would start coughing and it would continue for a day. It was massive coughing with alot of junk coming up. At first it scared us. Then it would go away and she would do well for the rest of her vacation. A swim in the ocean always helped her sinus problems too. Our ENT doc always said stay away from pools and lakes, if you want to swim go to the ocean.

I'm also glad cipro is working.We have had that happen, the psuedomonas is resistant to it so you stop for awhile and then when you go back on it seems to become sensitive again. Our MD is good about re-trying the oral antibiotics that stop working,we all much prefer the oral.

What does mIRC stand for? My daughter's BF's name is Bert, short for Robert. His mom did'nt want him called Bob so his Dad started to call him Bert.

Hope you continue to feel well....... a walk on the beach sounds so good right now.Here in the frozen tundra of Wi. we won'tbe doing that for a while, and when we can, the beachs of Lake Michigan, are just not the same. That's coming from a person that grew up near the ocean, though.
take care,
kathy
 
M

madisonsmom

New member
Kylie,
I bet awalk on the beach felt good, so glad to hear you were able to go. Do tyou live near an ocean beach ? If so, does, the salt air thing help you? I know for years ( even before the study) we always noted that when we crossed a bay bridge to the ocean condo where we stay, that maddy would start coughing and it would continue for a day. It was massive coughing with alot of junk coming up. At first it scared us. Then it would go away and she would do well for the rest of her vacation. A swim in the ocean always helped her sinus problems too. Our ENT doc always said stay away from pools and lakes, if you want to swim go to the ocean.

I'm also glad cipro is working.We have had that happen, the psuedomonas is resistant to it so you stop for awhile and then when you go back on it seems to become sensitive again. Our MD is good about re-trying the oral antibiotics that stop working,we all much prefer the oral.

What does mIRC stand for? My daughter's BF's name is Bert, short for Robert. His mom did'nt want him called Bob so his Dad started to call him Bert.

Hope you continue to feel well....... a walk on the beach sounds so good right now.Here in the frozen tundra of Wi. we won'tbe doing that for a while, and when we can, the beachs of Lake Michigan, are just not the same. That's coming from a person that grew up near the ocean, though.
take care,
kathy
 
L

Liza

New member
Hi ya'll, I'm supposed to be up here cleaning up Anna's bathroom. Getting stuff all dusted and resanitized for her return home. I haven't asked the doc if he's checked for APBA, the aspergillus thing. I am sure he has though. She had it when we were back in Dayton and they had said it was not really a problem unless she was allergic so they sent it off and of course she was. She did the whole antifungal then prednisone course for about 6 months and when we got to NE (it was a one yr. assignment in Ohio then off to NE) They took her off of it there and she's been clean ever since. They check her every so often to make sure it's not an issue again.

Hey Kylie, what, if you don't mind me asking, problems were you having with the Tobra? Anna was complaining shortly after that last round about her ears ringing. They are supposed to be getting a hearing test done. So glad to hear it's an up week for you. We too noticed that the girls have alot more drainage when we go to the beach and Anna coughed up tons of gunk. She seemed to feel better too. My brother-in-law and his wife live in FL. we sent the girls last summer for two weeks. No complaints from Anna during that time so it was a good trip. When she was 15 or was it 16? Ooooh, can't remember... between 10th and 11th grade. We went down to Key Largo and I swear the air is just coated in salt. That's when we really noticed it. The coughing and major clearing out. When they came up with the results of the study last year it got me to remembering. Anna doesn't do the hypertonic saline though. It's too rough on her throat. Rachel says "it doesn't do anything". I have a hard time getting her to be consistant with her treatments. At 16 I shouldn't have to remind her anymore. Yes, there are times when she doesn't have to be reminded. Of course she says that I only notice when she doesn't get them. We quit having to constantly remind Anna about this same age. I have tried not saying anything to see if she gets them but there's been a night or two that she was off to bed. Especially on a game night. She's an athletic trainer. No siree, you have a treatment to do, get back down here. She got really good at taking her enzymes for a while then got lax again. And you'd think, don't take enzymes = stomach issues. I tell her there's no way I can let her go off to school next summer (2008) if I'm not sure that she will do what she needs to do on her own. We'll continue to see how that goes.

Anna is so anxious to get out of the hospital. I have yet to talk to her this AM. She is usually a late riser. Like Maddy, she too spends alot of time sleeping. Right now we are covered in a blanket of ice here in North Texas. Hopefully things will have returned to normal by Wed. and we can get a flight out.

Anna does do some IM'ing with her friends but is really into facebook right now. Is Maddy on Facebook? Anna says it's way better than myspace. What school does Maddy go to? Anna only comes on here to look around, she doesn't post. I keep telling her she should but she hasn't. They do seem to have so much in common.

Well I"d better get cleaning. At some point today we have a rental car to return, when it's safer to drive.
 
L

Liza

New member
Hi ya'll, I'm supposed to be up here cleaning up Anna's bathroom. Getting stuff all dusted and resanitized for her return home. I haven't asked the doc if he's checked for APBA, the aspergillus thing. I am sure he has though. She had it when we were back in Dayton and they had said it was not really a problem unless she was allergic so they sent it off and of course she was. She did the whole antifungal then prednisone course for about 6 months and when we got to NE (it was a one yr. assignment in Ohio then off to NE) They took her off of it there and she's been clean ever since. They check her every so often to make sure it's not an issue again.

Hey Kylie, what, if you don't mind me asking, problems were you having with the Tobra? Anna was complaining shortly after that last round about her ears ringing. They are supposed to be getting a hearing test done. So glad to hear it's an up week for you. We too noticed that the girls have alot more drainage when we go to the beach and Anna coughed up tons of gunk. She seemed to feel better too. My brother-in-law and his wife live in FL. we sent the girls last summer for two weeks. No complaints from Anna during that time so it was a good trip. When she was 15 or was it 16? Ooooh, can't remember... between 10th and 11th grade. We went down to Key Largo and I swear the air is just coated in salt. That's when we really noticed it. The coughing and major clearing out. When they came up with the results of the study last year it got me to remembering. Anna doesn't do the hypertonic saline though. It's too rough on her throat. Rachel says "it doesn't do anything". I have a hard time getting her to be consistant with her treatments. At 16 I shouldn't have to remind her anymore. Yes, there are times when she doesn't have to be reminded. Of course she says that I only notice when she doesn't get them. We quit having to constantly remind Anna about this same age. I have tried not saying anything to see if she gets them but there's been a night or two that she was off to bed. Especially on a game night. She's an athletic trainer. No siree, you have a treatment to do, get back down here. She got really good at taking her enzymes for a while then got lax again. And you'd think, don't take enzymes = stomach issues. I tell her there's no way I can let her go off to school next summer (2008) if I'm not sure that she will do what she needs to do on her own. We'll continue to see how that goes.

Anna is so anxious to get out of the hospital. I have yet to talk to her this AM. She is usually a late riser. Like Maddy, she too spends alot of time sleeping. Right now we are covered in a blanket of ice here in North Texas. Hopefully things will have returned to normal by Wed. and we can get a flight out.

Anna does do some IM'ing with her friends but is really into facebook right now. Is Maddy on Facebook? Anna says it's way better than myspace. What school does Maddy go to? Anna only comes on here to look around, she doesn't post. I keep telling her she should but she hasn't. They do seem to have so much in common.

Well I"d better get cleaning. At some point today we have a rental car to return, when it's safer to drive.
 
L

Liza

New member
Hi ya'll, I'm supposed to be up here cleaning up Anna's bathroom. Getting stuff all dusted and resanitized for her return home. I haven't asked the doc if he's checked for APBA, the aspergillus thing. I am sure he has though. She had it when we were back in Dayton and they had said it was not really a problem unless she was allergic so they sent it off and of course she was. She did the whole antifungal then prednisone course for about 6 months and when we got to NE (it was a one yr. assignment in Ohio then off to NE) They took her off of it there and she's been clean ever since. They check her every so often to make sure it's not an issue again.

Hey Kylie, what, if you don't mind me asking, problems were you having with the Tobra? Anna was complaining shortly after that last round about her ears ringing. They are supposed to be getting a hearing test done. So glad to hear it's an up week for you. We too noticed that the girls have alot more drainage when we go to the beach and Anna coughed up tons of gunk. She seemed to feel better too. My brother-in-law and his wife live in FL. we sent the girls last summer for two weeks. No complaints from Anna during that time so it was a good trip. When she was 15 or was it 16? Ooooh, can't remember... between 10th and 11th grade. We went down to Key Largo and I swear the air is just coated in salt. That's when we really noticed it. The coughing and major clearing out. When they came up with the results of the study last year it got me to remembering. Anna doesn't do the hypertonic saline though. It's too rough on her throat. Rachel says "it doesn't do anything". I have a hard time getting her to be consistant with her treatments. At 16 I shouldn't have to remind her anymore. Yes, there are times when she doesn't have to be reminded. Of course she says that I only notice when she doesn't get them. We quit having to constantly remind Anna about this same age. I have tried not saying anything to see if she gets them but there's been a night or two that she was off to bed. Especially on a game night. She's an athletic trainer. No siree, you have a treatment to do, get back down here. She got really good at taking her enzymes for a while then got lax again. And you'd think, don't take enzymes = stomach issues. I tell her there's no way I can let her go off to school next summer (2008) if I'm not sure that she will do what she needs to do on her own. We'll continue to see how that goes.

Anna is so anxious to get out of the hospital. I have yet to talk to her this AM. She is usually a late riser. Like Maddy, she too spends alot of time sleeping. Right now we are covered in a blanket of ice here in North Texas. Hopefully things will have returned to normal by Wed. and we can get a flight out.

Anna does do some IM'ing with her friends but is really into facebook right now. Is Maddy on Facebook? Anna says it's way better than myspace. What school does Maddy go to? Anna only comes on here to look around, she doesn't post. I keep telling her she should but she hasn't. They do seem to have so much in common.

Well I"d better get cleaning. At some point today we have a rental car to return, when it's safer to drive.
 
K

kybert

New member
i live about 5 minutes from the beach. i dont think the salt air really helps. its mainly the exercise and if you accidently breathe in the water that helps. mirc is a program for chat. i used to use it years ago.

liza, im having balance problems. they seem to think its the tob. its eased off a bit now but its still there. my ears were ringing a bit too. what % of hypertonic did anna try? if it was the standard 7% you dont have to have it that strong. i can only handle 3% mixed in with my ventolin. no where near the strength of what they say you need but i still works.
 
K

kybert

New member
i live about 5 minutes from the beach. i dont think the salt air really helps. its mainly the exercise and if you accidently breathe in the water that helps. mirc is a program for chat. i used to use it years ago.

liza, im having balance problems. they seem to think its the tob. its eased off a bit now but its still there. my ears were ringing a bit too. what % of hypertonic did anna try? if it was the standard 7% you dont have to have it that strong. i can only handle 3% mixed in with my ventolin. no where near the strength of what they say you need but i still works.
 
K

kybert

New member
i live about 5 minutes from the beach. i dont think the salt air really helps. its mainly the exercise and if you accidently breathe in the water that helps. mirc is a program for chat. i used to use it years ago.

liza, im having balance problems. they seem to think its the tob. its eased off a bit now but its still there. my ears were ringing a bit too. what % of hypertonic did anna try? if it was the standard 7% you dont have to have it that strong. i can only handle 3% mixed in with my ventolin. no where near the strength of what they say you need but i still works.
 
L

Liza

New member
Hi, It was 7% HS. Her CF doc here put her on it. When she went back to NE they decided to try her on Cromolyn Sodium with the normal .05 albuterol solution. I have no idea if it was doing anything for her but I think it was. She was coughing up tons of mucus, really runny too. Is that considered working? Then right before she went back to NE she wasn't coughing up as much.

It's great that you can get some exercise. Anna can't really do much. She has problems with her knees hurting. We think it goes back to when she first started taking Cipro when she was 12 or 13. One of the side effects of Cipro has something to do with the cartlidge. It's not nearly as bad as it has been but still she worries too much stress will cause them to hurt. She likes to go to the mall though, so that's some exercise.
 
L

Liza

New member
Hi, It was 7% HS. Her CF doc here put her on it. When she went back to NE they decided to try her on Cromolyn Sodium with the normal .05 albuterol solution. I have no idea if it was doing anything for her but I think it was. She was coughing up tons of mucus, really runny too. Is that considered working? Then right before she went back to NE she wasn't coughing up as much.

It's great that you can get some exercise. Anna can't really do much. She has problems with her knees hurting. We think it goes back to when she first started taking Cipro when she was 12 or 13. One of the side effects of Cipro has something to do with the cartlidge. It's not nearly as bad as it has been but still she worries too much stress will cause them to hurt. She likes to go to the mall though, so that's some exercise.
 
L

Liza

New member
Hi, It was 7% HS. Her CF doc here put her on it. When she went back to NE they decided to try her on Cromolyn Sodium with the normal .05 albuterol solution. I have no idea if it was doing anything for her but I think it was. She was coughing up tons of mucus, really runny too. Is that considered working? Then right before she went back to NE she wasn't coughing up as much.

It's great that you can get some exercise. Anna can't really do much. She has problems with her knees hurting. We think it goes back to when she first started taking Cipro when she was 12 or 13. One of the side effects of Cipro has something to do with the cartlidge. It's not nearly as bad as it has been but still she worries too much stress will cause them to hurt. She likes to go to the mall though, so that's some exercise.
 
M

madisonsmom

New member
It's been along day.... I'm really starting to wonder if I can keep up the pace.. between work , no husband AND... We had 8 inches of snow on Monday. My husband went back to IL on sat and I feel alone again.... with all this snow. But, then I think,Maddy actualy has had a couple of good days... and that's something to celebrated around here. She went to Target by herself and then cleaned up the kitchen and put her sheets in the washer. Maybe I sound silly saying that this was a goodday, but I it's the truth. She has had glucoses that did't require 40-80 units at a wack. I think her glucoses are an indicator that her body is under less stress and she's responding to this round of antibiotics (something new) yehhhhh!!
I'm scared for her to come off.

The way things are going I will have a job at the Madison VA way before her we get her accepted at University Hopital for transplant. I work for the dept of surgery at a VA in Milwaukee and have spoken with the MDs here who say my job status is sucure there and we can move when ever we're ready, sometimes we get a few breaks in life and I'm ever so thankful.

My husband didn't get the flu shot and came down with it on Saturday, He left to go back to IL so just incase it wasn't the flu Maddy was inoculated against so he wouldn't give to her. So much for our weekend home together. Oh well... Maddy's feeling better, I said that.... Saturday she went to her BF's aunt's house for a few hr's to celebrate Bert and his twin's 22nd Bday. She then came home as the other kids went to the local watering hole to celebrate. Good choice.for her, I know she was sad though.. too live a normal life.

I wish I could get Maddy to do the saline, it makes her "too reactive" I wonder, is it the increased cough? We just got Normal(.3) saline as she had tried the hypertonic before and she couldn't tolerate it.

Kylie, what beach do you live near? If you'd rather not say it's fine, just curious.

Liza, do you leave wed for NE, hope the weather is better there. We are socked here with snow and ice and and it's 8-10 degrees here.

maddy is going to ask her MD on tHurs for the new drug for ABPA on thurs at her appt. I think it's called xolair.

Well I have to get some thing done before bed, Good night.
kathy
 
M

madisonsmom

New member
It's been along day.... I'm really starting to wonder if I can keep up the pace.. between work , no husband AND... We had 8 inches of snow on Monday. My husband went back to IL on sat and I feel alone again.... with all this snow. But, then I think,Maddy actualy has had a couple of good days... and that's something to celebrated around here. She went to Target by herself and then cleaned up the kitchen and put her sheets in the washer. Maybe I sound silly saying that this was a goodday, but I it's the truth. She has had glucoses that did't require 40-80 units at a wack. I think her glucoses are an indicator that her body is under less stress and she's responding to this round of antibiotics (something new) yehhhhh!!
I'm scared for her to come off.

The way things are going I will have a job at the Madison VA way before her we get her accepted at University Hopital for transplant. I work for the dept of surgery at a VA in Milwaukee and have spoken with the MDs here who say my job status is sucure there and we can move when ever we're ready, sometimes we get a few breaks in life and I'm ever so thankful.

My husband didn't get the flu shot and came down with it on Saturday, He left to go back to IL so just incase it wasn't the flu Maddy was inoculated against so he wouldn't give to her. So much for our weekend home together. Oh well... Maddy's feeling better, I said that.... Saturday she went to her BF's aunt's house for a few hr's to celebrate Bert and his twin's 22nd Bday. She then came home as the other kids went to the local watering hole to celebrate. Good choice.for her, I know she was sad though.. too live a normal life.

I wish I could get Maddy to do the saline, it makes her "too reactive" I wonder, is it the increased cough? We just got Normal(.3) saline as she had tried the hypertonic before and she couldn't tolerate it.

Kylie, what beach do you live near? If you'd rather not say it's fine, just curious.

Liza, do you leave wed for NE, hope the weather is better there. We are socked here with snow and ice and and it's 8-10 degrees here.

maddy is going to ask her MD on tHurs for the new drug for ABPA on thurs at her appt. I think it's called xolair.

Well I have to get some thing done before bed, Good night.
kathy
 
M

madisonsmom

New member
It's been along day.... I'm really starting to wonder if I can keep up the pace.. between work , no husband AND... We had 8 inches of snow on Monday. My husband went back to IL on sat and I feel alone again.... with all this snow. But, then I think,Maddy actualy has had a couple of good days... and that's something to celebrated around here. She went to Target by herself and then cleaned up the kitchen and put her sheets in the washer. Maybe I sound silly saying that this was a goodday, but I it's the truth. She has had glucoses that did't require 40-80 units at a wack. I think her glucoses are an indicator that her body is under less stress and she's responding to this round of antibiotics (something new) yehhhhh!!
I'm scared for her to come off.

The way things are going I will have a job at the Madison VA way before her we get her accepted at University Hopital for transplant. I work for the dept of surgery at a VA in Milwaukee and have spoken with the MDs here who say my job status is sucure there and we can move when ever we're ready, sometimes we get a few breaks in life and I'm ever so thankful.

My husband didn't get the flu shot and came down with it on Saturday, He left to go back to IL so just incase it wasn't the flu Maddy was inoculated against so he wouldn't give to her. So much for our weekend home together. Oh well... Maddy's feeling better, I said that.... Saturday she went to her BF's aunt's house for a few hr's to celebrate Bert and his twin's 22nd Bday. She then came home as the other kids went to the local watering hole to celebrate. Good choice.for her, I know she was sad though.. too live a normal life.

I wish I could get Maddy to do the saline, it makes her "too reactive" I wonder, is it the increased cough? We just got Normal(.3) saline as she had tried the hypertonic before and she couldn't tolerate it.

Kylie, what beach do you live near? If you'd rather not say it's fine, just curious.

Liza, do you leave wed for NE, hope the weather is better there. We are socked here with snow and ice and and it's 8-10 degrees here.

maddy is going to ask her MD on tHurs for the new drug for ABPA on thurs at her appt. I think it's called xolair.

Well I have to get some thing done before bed, Good night.
kathy
 
M

madisonsmom

New member
Kylie,

Perth as Austraila or Scottland ? That's far in either case. My daughter want's to go to the "land down under", but I don't think she could handle the trip at this point. Maybe someday.

Since I'm new , I may be asking redundent questions, sorry if I am.
are you on a transplant list?
kathy
 
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