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CF Doc. gives negative survival rate for 9 yr. old,Do I get second opinion??
- Thread starter katlynnsmom
- Start date
katlynnsmom
New member
Just a little update....slowly working each room of the house with the taking up carpet to tile thing. That is a job!! She seems to be doing well. Off the Tobi for this month ...but still on the predisolone. Keeping her eating and activity up. Her ox. level is staying in the mid to high 90's. But she is going to Huntsville thursday for a minor..hopefully...surgery. Her port has been giving me trouble the past few months flushing it. And could not get it to flush this last time. Dr. said she has out grown it, and it needs to be replaced. Which she has had it in since 2001...It has done it's job.It is suppose to be an outpatient surgery...we hope.Every little minor thing seems to be nerve wrecking in all our lives.We just all seem to have to take it as it comes.Wish you all well!!
Nora
Nora
katlynnsmom
New member
Just a little update....slowly working each room of the house with the taking up carpet to tile thing. That is a job!! She seems to be doing well. Off the Tobi for this month ...but still on the predisolone. Keeping her eating and activity up. Her ox. level is staying in the mid to high 90's. But she is going to Huntsville thursday for a minor..hopefully...surgery. Her port has been giving me trouble the past few months flushing it. And could not get it to flush this last time. Dr. said she has out grown it, and it needs to be replaced. Which she has had it in since 2001...It has done it's job.It is suppose to be an outpatient surgery...we hope.Every little minor thing seems to be nerve wrecking in all our lives.We just all seem to have to take it as it comes.Wish you all well!!
Nora
Nora
katlynnsmom
New member
Just a little update....slowly working each room of the house with the taking up carpet to tile thing. That is a job!! She seems to be doing well. Off the Tobi for this month ...but still on the predisolone. Keeping her eating and activity up. Her ox. level is staying in the mid to high 90's. But she is going to Huntsville thursday for a minor..hopefully...surgery. Her port has been giving me trouble the past few months flushing it. And could not get it to flush this last time. Dr. said she has out grown it, and it needs to be replaced. Which she has had it in since 2001...It has done it's job.It is suppose to be an outpatient surgery...we hope.Every little minor thing seems to be nerve wrecking in all our lives.We just all seem to have to take it as it comes.Wish you all well!!
Nora
Nora
katlynnsmom
New member
Just a little update....slowly working each room of the house with the taking up carpet to tile thing. That is a job!! She seems to be doing well. Off the Tobi for this month ...but still on the predisolone. Keeping her eating and activity up. Her ox. level is staying in the mid to high 90's. But she is going to Huntsville thursday for a minor..hopefully...surgery. Her port has been giving me trouble the past few months flushing it. And could not get it to flush this last time. Dr. said she has out grown it, and it needs to be replaced. Which she has had it in since 2001...It has done it's job.It is suppose to be an outpatient surgery...we hope.Every little minor thing seems to be nerve wrecking in all our lives.We just all seem to have to take it as it comes.Wish you all well!!
Nora
Nora
katlynnsmom
New member
Just a little update....slowly working each room of the house with the taking up carpet to tile thing. That is a job!! She seems to be doing well. Off the Tobi for this month ...but still on the predisolone. Keeping her eating and activity up. Her ox. level is staying in the mid to high 90's. But she is going to Huntsville thursday for a minor..hopefully...surgery. Her port has been giving me trouble the past few months flushing it. And could not get it to flush this last time. Dr. said she has out grown it, and it needs to be replaced. Which she has had it in since 2001...It has done it's job.It is suppose to be an outpatient surgery...we hope.Every little minor thing seems to be nerve wrecking in all our lives.We just all seem to have to take it as it comes.Wish you all well!!
<br /> Nora
<br /> Nora
Nightwriter
New member
Hi Nora,
I think you are amazing! Pulling up the carpet yourself AND laying tile. When you go for it, you really go for it! I am so happy that with the changes you are making, Katlynn is doing well. The carpet removal is going to make a difference. With everything you do, you will start to see improvement. It takes time. She didn't get like this overnight. But if you stick with making changes, you will start to see less exacerbations and ultimately less antibiotics. And hopefully lung function will start to go up too.
I liked your idea of putting filters in the vents. That's one I might do too. A few more suggestions you can try if you like. Think about an air filter. If not for the house, then for her bedroom. Ask the doctor about Claritin and Singulair (as mentioned by others). They both help so much. If her doctor approves, Costco has generic Claritin under the name Allerclear. Nasal Rinses are great to clear the sinuses, so mucus doesn't drip down into her chest. It's also probably better to clean when she's not around or have her stay in her room if it's possible. Mostly the less irritants her lungs are exposed to, the better she will be. Also if you use other products with a lot of fragrance like wearing perfume, or very fragrant shampoos, it would be better if you and other family members didn't wear them around her.
I still don't want to overwhelm you with a million things. I think what you are doing is great. Please keep us informed with her Katlynn's progress.
I think you are amazing! Pulling up the carpet yourself AND laying tile. When you go for it, you really go for it! I am so happy that with the changes you are making, Katlynn is doing well. The carpet removal is going to make a difference. With everything you do, you will start to see improvement. It takes time. She didn't get like this overnight. But if you stick with making changes, you will start to see less exacerbations and ultimately less antibiotics. And hopefully lung function will start to go up too.
I liked your idea of putting filters in the vents. That's one I might do too. A few more suggestions you can try if you like. Think about an air filter. If not for the house, then for her bedroom. Ask the doctor about Claritin and Singulair (as mentioned by others). They both help so much. If her doctor approves, Costco has generic Claritin under the name Allerclear. Nasal Rinses are great to clear the sinuses, so mucus doesn't drip down into her chest. It's also probably better to clean when she's not around or have her stay in her room if it's possible. Mostly the less irritants her lungs are exposed to, the better she will be. Also if you use other products with a lot of fragrance like wearing perfume, or very fragrant shampoos, it would be better if you and other family members didn't wear them around her.
I still don't want to overwhelm you with a million things. I think what you are doing is great. Please keep us informed with her Katlynn's progress.
Nightwriter
New member
Hi Nora,
I think you are amazing! Pulling up the carpet yourself AND laying tile. When you go for it, you really go for it! I am so happy that with the changes you are making, Katlynn is doing well. The carpet removal is going to make a difference. With everything you do, you will start to see improvement. It takes time. She didn't get like this overnight. But if you stick with making changes, you will start to see less exacerbations and ultimately less antibiotics. And hopefully lung function will start to go up too.
I liked your idea of putting filters in the vents. That's one I might do too. A few more suggestions you can try if you like. Think about an air filter. If not for the house, then for her bedroom. Ask the doctor about Claritin and Singulair (as mentioned by others). They both help so much. If her doctor approves, Costco has generic Claritin under the name Allerclear. Nasal Rinses are great to clear the sinuses, so mucus doesn't drip down into her chest. It's also probably better to clean when she's not around or have her stay in her room if it's possible. Mostly the less irritants her lungs are exposed to, the better she will be. Also if you use other products with a lot of fragrance like wearing perfume, or very fragrant shampoos, it would be better if you and other family members didn't wear them around her.
I still don't want to overwhelm you with a million things. I think what you are doing is great. Please keep us informed with her Katlynn's progress.
I think you are amazing! Pulling up the carpet yourself AND laying tile. When you go for it, you really go for it! I am so happy that with the changes you are making, Katlynn is doing well. The carpet removal is going to make a difference. With everything you do, you will start to see improvement. It takes time. She didn't get like this overnight. But if you stick with making changes, you will start to see less exacerbations and ultimately less antibiotics. And hopefully lung function will start to go up too.
I liked your idea of putting filters in the vents. That's one I might do too. A few more suggestions you can try if you like. Think about an air filter. If not for the house, then for her bedroom. Ask the doctor about Claritin and Singulair (as mentioned by others). They both help so much. If her doctor approves, Costco has generic Claritin under the name Allerclear. Nasal Rinses are great to clear the sinuses, so mucus doesn't drip down into her chest. It's also probably better to clean when she's not around or have her stay in her room if it's possible. Mostly the less irritants her lungs are exposed to, the better she will be. Also if you use other products with a lot of fragrance like wearing perfume, or very fragrant shampoos, it would be better if you and other family members didn't wear them around her.
I still don't want to overwhelm you with a million things. I think what you are doing is great. Please keep us informed with her Katlynn's progress.
Nightwriter
New member
Hi Nora,
I think you are amazing! Pulling up the carpet yourself AND laying tile. When you go for it, you really go for it! I am so happy that with the changes you are making, Katlynn is doing well. The carpet removal is going to make a difference. With everything you do, you will start to see improvement. It takes time. She didn't get like this overnight. But if you stick with making changes, you will start to see less exacerbations and ultimately less antibiotics. And hopefully lung function will start to go up too.
I liked your idea of putting filters in the vents. That's one I might do too. A few more suggestions you can try if you like. Think about an air filter. If not for the house, then for her bedroom. Ask the doctor about Claritin and Singulair (as mentioned by others). They both help so much. If her doctor approves, Costco has generic Claritin under the name Allerclear. Nasal Rinses are great to clear the sinuses, so mucus doesn't drip down into her chest. It's also probably better to clean when she's not around or have her stay in her room if it's possible. Mostly the less irritants her lungs are exposed to, the better she will be. Also if you use other products with a lot of fragrance like wearing perfume, or very fragrant shampoos, it would be better if you and other family members didn't wear them around her.
I still don't want to overwhelm you with a million things. I think what you are doing is great. Please keep us informed with her Katlynn's progress.
I think you are amazing! Pulling up the carpet yourself AND laying tile. When you go for it, you really go for it! I am so happy that with the changes you are making, Katlynn is doing well. The carpet removal is going to make a difference. With everything you do, you will start to see improvement. It takes time. She didn't get like this overnight. But if you stick with making changes, you will start to see less exacerbations and ultimately less antibiotics. And hopefully lung function will start to go up too.
I liked your idea of putting filters in the vents. That's one I might do too. A few more suggestions you can try if you like. Think about an air filter. If not for the house, then for her bedroom. Ask the doctor about Claritin and Singulair (as mentioned by others). They both help so much. If her doctor approves, Costco has generic Claritin under the name Allerclear. Nasal Rinses are great to clear the sinuses, so mucus doesn't drip down into her chest. It's also probably better to clean when she's not around or have her stay in her room if it's possible. Mostly the less irritants her lungs are exposed to, the better she will be. Also if you use other products with a lot of fragrance like wearing perfume, or very fragrant shampoos, it would be better if you and other family members didn't wear them around her.
I still don't want to overwhelm you with a million things. I think what you are doing is great. Please keep us informed with her Katlynn's progress.
Nightwriter
New member
Hi Nora,
I think you are amazing! Pulling up the carpet yourself AND laying tile. When you go for it, you really go for it! I am so happy that with the changes you are making, Katlynn is doing well. The carpet removal is going to make a difference. With everything you do, you will start to see improvement. It takes time. She didn't get like this overnight. But if you stick with making changes, you will start to see less exacerbations and ultimately less antibiotics. And hopefully lung function will start to go up too.
I liked your idea of putting filters in the vents. That's one I might do too. A few more suggestions you can try if you like. Think about an air filter. If not for the house, then for her bedroom. Ask the doctor about Claritin and Singulair (as mentioned by others). They both help so much. If her doctor approves, Costco has generic Claritin under the name Allerclear. Nasal Rinses are great to clear the sinuses, so mucus doesn't drip down into her chest. It's also probably better to clean when she's not around or have her stay in her room if it's possible. Mostly the less irritants her lungs are exposed to, the better she will be. Also if you use other products with a lot of fragrance like wearing perfume, or very fragrant shampoos, it would be better if you and other family members didn't wear them around her.
I still don't want to overwhelm you with a million things. I think what you are doing is great. Please keep us informed with her Katlynn's progress.
I think you are amazing! Pulling up the carpet yourself AND laying tile. When you go for it, you really go for it! I am so happy that with the changes you are making, Katlynn is doing well. The carpet removal is going to make a difference. With everything you do, you will start to see improvement. It takes time. She didn't get like this overnight. But if you stick with making changes, you will start to see less exacerbations and ultimately less antibiotics. And hopefully lung function will start to go up too.
I liked your idea of putting filters in the vents. That's one I might do too. A few more suggestions you can try if you like. Think about an air filter. If not for the house, then for her bedroom. Ask the doctor about Claritin and Singulair (as mentioned by others). They both help so much. If her doctor approves, Costco has generic Claritin under the name Allerclear. Nasal Rinses are great to clear the sinuses, so mucus doesn't drip down into her chest. It's also probably better to clean when she's not around or have her stay in her room if it's possible. Mostly the less irritants her lungs are exposed to, the better she will be. Also if you use other products with a lot of fragrance like wearing perfume, or very fragrant shampoos, it would be better if you and other family members didn't wear them around her.
I still don't want to overwhelm you with a million things. I think what you are doing is great. Please keep us informed with her Katlynn's progress.
Nightwriter
New member
Hi Nora,
<br />
<br />I think you are amazing! Pulling up the carpet yourself AND laying tile. When you go for it, you really go for it! I am so happy that with the changes you are making, Katlynn is doing well. The carpet removal is going to make a difference. With everything you do, you will start to see improvement. It takes time. She didn't get like this overnight. But if you stick with making changes, you will start to see less exacerbations and ultimately less antibiotics. And hopefully lung function will start to go up too.
<br />
<br />I liked your idea of putting filters in the vents. That's one I might do too. A few more suggestions you can try if you like. Think about an air filter. If not for the house, then for her bedroom. Ask the doctor about Claritin and Singulair (as mentioned by others). They both help so much. If her doctor approves, Costco has generic Claritin under the name Allerclear. Nasal Rinses are great to clear the sinuses, so mucus doesn't drip down into her chest. It's also probably better to clean when she's not around or have her stay in her room if it's possible. Mostly the less irritants her lungs are exposed to, the better she will be. Also if you use other products with a lot of fragrance like wearing perfume, or very fragrant shampoos, it would be better if you and other family members didn't wear them around her.
<br />
<br />I still don't want to overwhelm you with a million things. I think what you are doing is great. Please keep us informed with her Katlynn's progress.
<br />
<br />
<br />
<br />I think you are amazing! Pulling up the carpet yourself AND laying tile. When you go for it, you really go for it! I am so happy that with the changes you are making, Katlynn is doing well. The carpet removal is going to make a difference. With everything you do, you will start to see improvement. It takes time. She didn't get like this overnight. But if you stick with making changes, you will start to see less exacerbations and ultimately less antibiotics. And hopefully lung function will start to go up too.
<br />
<br />I liked your idea of putting filters in the vents. That's one I might do too. A few more suggestions you can try if you like. Think about an air filter. If not for the house, then for her bedroom. Ask the doctor about Claritin and Singulair (as mentioned by others). They both help so much. If her doctor approves, Costco has generic Claritin under the name Allerclear. Nasal Rinses are great to clear the sinuses, so mucus doesn't drip down into her chest. It's also probably better to clean when she's not around or have her stay in her room if it's possible. Mostly the less irritants her lungs are exposed to, the better she will be. Also if you use other products with a lot of fragrance like wearing perfume, or very fragrant shampoos, it would be better if you and other family members didn't wear them around her.
<br />
<br />I still don't want to overwhelm you with a million things. I think what you are doing is great. Please keep us informed with her Katlynn's progress.
<br />
<br />
Good to hear from you Nora. It sounds like you have been very busy. My hubby and I have been doing the same thing at our house with carpets and tile. It definitely is a job! My son said he noticed an improvement in his breathing the very first few days that the carpet was gone, so all of the hard work and sore muscles were worth it.
I hope the minor surgery stays minor, and that you will have a good news update for us soon.
Stacey
I hope the minor surgery stays minor, and that you will have a good news update for us soon.
Stacey
Good to hear from you Nora. It sounds like you have been very busy. My hubby and I have been doing the same thing at our house with carpets and tile. It definitely is a job! My son said he noticed an improvement in his breathing the very first few days that the carpet was gone, so all of the hard work and sore muscles were worth it.
I hope the minor surgery stays minor, and that you will have a good news update for us soon.
Stacey
I hope the minor surgery stays minor, and that you will have a good news update for us soon.
Stacey
Good to hear from you Nora. It sounds like you have been very busy. My hubby and I have been doing the same thing at our house with carpets and tile. It definitely is a job! My son said he noticed an improvement in his breathing the very first few days that the carpet was gone, so all of the hard work and sore muscles were worth it.
I hope the minor surgery stays minor, and that you will have a good news update for us soon.
Stacey
I hope the minor surgery stays minor, and that you will have a good news update for us soon.
Stacey
Good to hear from you Nora. It sounds like you have been very busy. My hubby and I have been doing the same thing at our house with carpets and tile. It definitely is a job! My son said he noticed an improvement in his breathing the very first few days that the carpet was gone, so all of the hard work and sore muscles were worth it.
I hope the minor surgery stays minor, and that you will have a good news update for us soon.
Stacey
I hope the minor surgery stays minor, and that you will have a good news update for us soon.
Stacey
Good to hear from you Nora. It sounds like you have been very busy. My hubby and I have been doing the same thing at our house with carpets and tile. It definitely is a job! My son said he noticed an improvement in his breathing the very first few days that the carpet was gone, so all of the hard work and sore muscles were worth it.
<br />
<br />I hope the minor surgery stays minor, and that you will have a good news update for us soon.
<br />
<br />Stacey
<br />
<br />I hope the minor surgery stays minor, and that you will have a good news update for us soon.
<br />
<br />Stacey