My Story-New Member

[hockeykid]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
Hello Everyone!
I was introduced to this site by a fellow member. She thought the site could be of great support to me.
I have never offically been diagnosed with Cystic Fibrosis. I have always been given the title of having " Atypical CF". Most of my doctors suspect I truly have it, but nobody can get a definate diagnosis for me. All of my tests come back "inconclusive". My insurance wants more evidence before they pay for the full spectrum genetic testing. It has really tough on me. I am on tons of medications for my lungs including daily antibiotics and oral steriods. I also must spend 90 minutes twice daily nebbing and vesting. I find the time it takes to do lung treatments to be very hard on me. Last year, I had I feeding tube inserted because my food can't digest due to all the sticky congestion in my digestive system. I am in my early 30's. I do not feel I should have to settle for no answers concerning my health. If anyone could recommend a good CF Clinic in the New York or New Jersey area, I would greatly appreciate it. I live about 20 minutes from Manhattan. I will travel up to an hour to clinic appointments. I am not happy with my current CF Clinic!!! I heard this is a wonderful group. I look foward to being a member. Thank you for reading my post!!
Shelly

 

[hockeykid]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
Hello Everyone!
I was introduced to this site by a fellow member. She thought the site could be of great support to me.
I have never offically been diagnosed with Cystic Fibrosis. I have always been given the title of having " Atypical CF". Most of my doctors suspect I truly have it, but nobody can get a definate diagnosis for me. All of my tests come back "inconclusive". My insurance wants more evidence before they pay for the full spectrum genetic testing. It has really tough on me. I am on tons of medications for my lungs including daily antibiotics and oral steriods. I also must spend 90 minutes twice daily nebbing and vesting. I find the time it takes to do lung treatments to be very hard on me. Last year, I had I feeding tube inserted because my food can't digest due to all the sticky congestion in my digestive system. I am in my early 30's. I do not feel I should have to settle for no answers concerning my health. If anyone could recommend a good CF Clinic in the New York or New Jersey area, I would greatly appreciate it. I live about 20 minutes from Manhattan. I will travel up to an hour to clinic appointments. I am not happy with my current CF Clinic!!! I heard this is a wonderful group. I look foward to being a member. Thank you for reading my post!!
Shelly

 

[hockeykid]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
Hello Everyone!
I was introduced to this site by a fellow member. She thought the site could be of great support to me.
I have never offically been diagnosed with Cystic Fibrosis. I have always been given the title of having " Atypical CF". Most of my doctors suspect I truly have it, but nobody can get a definate diagnosis for me. All of my tests come back "inconclusive". My insurance wants more evidence before they pay for the full spectrum genetic testing. It has really tough on me. I am on tons of medications for my lungs including daily antibiotics and oral steriods. I also must spend 90 minutes twice daily nebbing and vesting. I find the time it takes to do lung treatments to be very hard on me. Last year, I had I feeding tube inserted because my food can't digest due to all the sticky congestion in my digestive system. I am in my early 30's. I do not feel I should have to settle for no answers concerning my health. If anyone could recommend a good CF Clinic in the New York or New Jersey area, I would greatly appreciate it. I live about 20 minutes from Manhattan. I will travel up to an hour to clinic appointments. I am not happy with my current CF Clinic!!! I heard this is a wonderful group. I look foward to being a member. Thank you for reading my post!!
Shelly

 

[hockeykid]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
Hello Everyone!
I was introduced to this site by a fellow member. She thought the site could be of great support to me.
I have never offically been diagnosed with Cystic Fibrosis. I have always been given the title of having " Atypical CF". Most of my doctors suspect I truly have it, but nobody can get a definate diagnosis for me. All of my tests come back "inconclusive". My insurance wants more evidence before they pay for the full spectrum genetic testing. It has really tough on me. I am on tons of medications for my lungs including daily antibiotics and oral steriods. I also must spend 90 minutes twice daily nebbing and vesting. I find the time it takes to do lung treatments to be very hard on me. Last year, I had I feeding tube inserted because my food can't digest due to all the sticky congestion in my digestive system. I am in my early 30's. I do not feel I should have to settle for no answers concerning my health. If anyone could recommend a good CF Clinic in the New York or New Jersey area, I would greatly appreciate it. I live about 20 minutes from Manhattan. I will travel up to an hour to clinic appointments. I am not happy with my current CF Clinic!!! I heard this is a wonderful group. I look foward to being a member. Thank you for reading my post!!
Shelly

 

[hockeykid]

<img src="i/expressions/face-icon-small-confused.gif" border="0">
<br />Hello Everyone!
<br />I was introduced to this site by a fellow member. She thought the site could be of great support to me.
<br />I have never offically been diagnosed with Cystic Fibrosis. I have always been given the title of having " Atypical CF". Most of my doctors suspect I truly have it, but nobody can get a definate diagnosis for me. All of my tests come back "inconclusive". My insurance wants more evidence before they pay for the full spectrum genetic testing. It has really tough on me. I am on tons of medications for my lungs including daily antibiotics and oral steriods. I also must spend 90 minutes twice daily nebbing and vesting. I find the time it takes to do lung treatments to be very hard on me. Last year, I had I feeding tube inserted because my food can't digest due to all the sticky congestion in my digestive system. I am in my early 30's. I do not feel I should have to settle for no answers concerning my health. If anyone could recommend a good CF Clinic in the New York or New Jersey area, I would greatly appreciate it. I live about 20 minutes from Manhattan. I will travel up to an hour to clinic appointments. I am not happy with my current CF Clinic!!! I heard this is a wonderful group. I look foward to being a member. Thank you for reading my post!!
<br />Shelly

 

[debs2girls]

Hi Shelly, welcome aboard. You will love it here just like the rest of us.
Has anyone ever mention your taking enzymes?

 

[debs2girls]

Hi Shelly, welcome aboard. You will love it here just like the rest of us.
Has anyone ever mention your taking enzymes?

 

[debs2girls]

Hi Shelly, welcome aboard. You will love it here just like the rest of us.
Has anyone ever mention your taking enzymes?

 

[debs2girls]

Hi Shelly, welcome aboard. You will love it here just like the rest of us.
Has anyone ever mention your taking enzymes?

 

[debs2girls]

Hi Shelly, welcome aboard. You will love it here just like the rest of us.
<br />Has anyone ever mention your taking enzymes?

 

[chrissyd]

Hi Shelly and welcome to the site. My name is Chrissy and I am 31 years old with CF. I'm involved in an adults study at NIH (in Bethesda MD)
I'm glad your friend recommended this site, and I hope you find the support you need!

<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

Hi Shelly and welcome to the site. My name is Chrissy and I am 31 years old with CF. I'm involved in an adults study at NIH (in Bethesda MD)
I'm glad your friend recommended this site, and I hope you find the support you need!

<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

Hi Shelly and welcome to the site. My name is Chrissy and I am 31 years old with CF. I'm involved in an adults study at NIH (in Bethesda MD)
I'm glad your friend recommended this site, and I hope you find the support you need!

<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

Hi Shelly and welcome to the site. My name is Chrissy and I am 31 years old with CF. I'm involved in an adults study at NIH (in Bethesda MD)
I'm glad your friend recommended this site, and I hope you find the support you need!

<img src="i/expressions/rose.gif" border="0">

 

[chrissyd]

Hi Shelly and welcome to the site. My name is Chrissy and I am 31 years old with CF. I'm involved in an adults study at NIH (in Bethesda MD)
<br />I'm glad your friend recommended this site, and I hope you find the support you need!
<br />
<br /><img src="i/expressions/rose.gif" border="0">

 

[JazzysMom]

Welcome! The mutual friend of ours told me that you might be joining/posting.

Its sad that with your history the insurance wont pay for additional testing. Have you had a sputum culture done to see what/if any bacterias you are growing?

Are you taking digestive enzymes to help break the food down?

Onto CF Centers....NYC has some great ones. I started out at Columbia Presbyterian, but then the group moved to St. Vincents & I went with them. I hear there is still a fabulous group at Columbia, but I had bonded with the group that left to go to St. Vincents.

So now 33, almost 34 years later I still go to St. Vincents on 7th Ave/12th St in Manhattan. We have a few members that go there although not all of them are quite as active, but Joni a/k/a BelEache & I are very.

PM me if you would like more information.....

We are here to help!

 

[beleache]

Hi & welcome to the site Shelly..

St. Vincents is my third clinic (as Melissa mentioned i go there as well) I was at Stony Brook for about 12 yrs, & LIJ one year.. I am finding St. Vincents to be a good fit for me.

Besides the questions Melissa posed, have you gotten in touch w/ Steve at Ambry? He may be able to help you figure a way to get insurance approval for the full panel.. you can find him in the Family section, under Welcome Ambry Genetics..

If you have any questions please pm me.. Glad you are here !! <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[JazzysMom]

Welcome! The mutual friend of ours told me that you might be joining/posting.

Its sad that with your history the insurance wont pay for additional testing. Have you had a sputum culture done to see what/if any bacterias you are growing?

Are you taking digestive enzymes to help break the food down?

Onto CF Centers....NYC has some great ones. I started out at Columbia Presbyterian, but then the group moved to St. Vincents & I went with them. I hear there is still a fabulous group at Columbia, but I had bonded with the group that left to go to St. Vincents.

So now 33, almost 34 years later I still go to St. Vincents on 7th Ave/12th St in Manhattan. We have a few members that go there although not all of them are quite as active, but Joni a/k/a BelEache & I are very.

PM me if you would like more information.....

We are here to help!

 

[beleache]

Hi & welcome to the site Shelly..

St. Vincents is my third clinic (as Melissa mentioned i go there as well) I was at Stony Brook for about 12 yrs, & LIJ one year.. I am finding St. Vincents to be a good fit for me.

Besides the questions Melissa posed, have you gotten in touch w/ Steve at Ambry? He may be able to help you figure a way to get insurance approval for the full panel.. you can find him in the Family section, under Welcome Ambry Genetics..

If you have any questions please pm me.. Glad you are here !! <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni

 

[JazzysMom]

Welcome! The mutual friend of ours told me that you might be joining/posting.

Its sad that with your history the insurance wont pay for additional testing. Have you had a sputum culture done to see what/if any bacterias you are growing?

Are you taking digestive enzymes to help break the food down?

Onto CF Centers....NYC has some great ones. I started out at Columbia Presbyterian, but then the group moved to St. Vincents & I went with them. I hear there is still a fabulous group at Columbia, but I had bonded with the group that left to go to St. Vincents.

So now 33, almost 34 years later I still go to St. Vincents on 7th Ave/12th St in Manhattan. We have a few members that go there although not all of them are quite as active, but Joni a/k/a BelEache & I are very.

PM me if you would like more information.....

We are here to help!