My Story-New Member

B

beleache

New member
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
 
J

JazzysMom

New member
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!
 
B

beleache

New member
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
 
J

JazzysMom

New member
Welcome! The mutual friend of ours told me that you might be joining/posting.
<br />
<br />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?
<br />
<br />Are you taking digestive enzymes to help break the food down?
<br />
<br />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.
<br />
<br />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.
<br />
<br />PM me if you would like more information.....
<br />
<br />We are here to help!
<br />
<br />
 
B

beleache

New member
Hi & welcome to the site Shelly..
<br />
<br /> 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.
<br />
<br /> 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..
<br />
<br /> If you have any questions please pm me.. Glad you are here !! <img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 
J

JORDYSMOM

New member
Hi and welcome. So glad you joined. I know you will find wonderful resources here. I hope you can get the definitive answers you need.

Stacey
 
J

JORDYSMOM

New member
Hi and welcome. So glad you joined. I know you will find wonderful resources here. I hope you can get the definitive answers you need.

Stacey
 
J

JORDYSMOM

New member
Hi and welcome. So glad you joined. I know you will find wonderful resources here. I hope you can get the definitive answers you need.

Stacey
 
J

JORDYSMOM

New member
Hi and welcome. So glad you joined. I know you will find wonderful resources here. I hope you can get the definitive answers you need.

Stacey
 
J

JORDYSMOM

New member
Hi and welcome. So glad you joined. I know you will find wonderful resources here. I hope you can get the definitive answers you need.
<br />
<br />Stacey
 
N

Nightwriter

New member
Hi Shelly,

Happy to see you here. There are so many of us that are just like you, so you will see that people will completely understand all that you are going through. Plus so many people can offer you valuable tips whether it is how you can take back some control over a disease that thinks it has a mind of it's own -- or finding ways to save time off a long and tedious treatment routine.

My case is similar to yours in some ways. No real diagnosis, but strong suspicions of CF. I first got sick at age 21, with a high normal sweat test, and pseudomonas pneumonia (a telltale sign of CF). I was on IV meds for 2 weeks. And then the usual lung manifestations ie: frequent infections, bleeding, declining lung function, and the acquiring of multiple bacterias like staph and MAC.

When the genetic test first came out, they found one gene. My doctors always suspected CF, but I would waver between thinking "maybe I do have it", to "I absolutely don't have it." Then I decided NOT to get the full test when it became available, because I liked thinking I didn't have it. And I was lucky to have great insurance that paid for anything the doctors ordered. So for me, a diagnosis wouldn't have changed anything.

Last year, when I signed up for an amazing California program (that hopefully won't be cut) that would give me peace of mind in case I ever found myself without insurance, they sent me for the genetic test. They found the second gene, and at this point I was thrilled. Because it meant that I could join this special program (my insurance had increased in one year from $500 per month to $1500 per month and was going up again possibly to $2000.)

So now it's actually a good thing to know that I do have CF. And if I had tested negative, I would have had all the same symptoms, but without essential medical coverage. I can't live in denial any more. And the good news is, if there is ever any shot of a new treatment or cure, it is imperative to know what the mutations are.

The CF center that I was sent to thought I was crazy when I whooped with joy when they told me that I did indeed have CF. After living with the perpetual fear of not having good coverage, this was great news.

So, welcome. And you will love the people here. This forum is amazing. And soon you'll find yourself wanting to jump in on everything too.
 
N

Nightwriter

New member
Hi Shelly,

Happy to see you here. There are so many of us that are just like you, so you will see that people will completely understand all that you are going through. Plus so many people can offer you valuable tips whether it is how you can take back some control over a disease that thinks it has a mind of it's own -- or finding ways to save time off a long and tedious treatment routine.

My case is similar to yours in some ways. No real diagnosis, but strong suspicions of CF. I first got sick at age 21, with a high normal sweat test, and pseudomonas pneumonia (a telltale sign of CF). I was on IV meds for 2 weeks. And then the usual lung manifestations ie: frequent infections, bleeding, declining lung function, and the acquiring of multiple bacterias like staph and MAC.

When the genetic test first came out, they found one gene. My doctors always suspected CF, but I would waver between thinking "maybe I do have it", to "I absolutely don't have it." Then I decided NOT to get the full test when it became available, because I liked thinking I didn't have it. And I was lucky to have great insurance that paid for anything the doctors ordered. So for me, a diagnosis wouldn't have changed anything.

Last year, when I signed up for an amazing California program (that hopefully won't be cut) that would give me peace of mind in case I ever found myself without insurance, they sent me for the genetic test. They found the second gene, and at this point I was thrilled. Because it meant that I could join this special program (my insurance had increased in one year from $500 per month to $1500 per month and was going up again possibly to $2000.)

So now it's actually a good thing to know that I do have CF. And if I had tested negative, I would have had all the same symptoms, but without essential medical coverage. I can't live in denial any more. And the good news is, if there is ever any shot of a new treatment or cure, it is imperative to know what the mutations are.

The CF center that I was sent to thought I was crazy when I whooped with joy when they told me that I did indeed have CF. After living with the perpetual fear of not having good coverage, this was great news.

So, welcome. And you will love the people here. This forum is amazing. And soon you'll find yourself wanting to jump in on everything too.
 
N

Nightwriter

New member
Hi Shelly,

Happy to see you here. There are so many of us that are just like you, so you will see that people will completely understand all that you are going through. Plus so many people can offer you valuable tips whether it is how you can take back some control over a disease that thinks it has a mind of it's own -- or finding ways to save time off a long and tedious treatment routine.

My case is similar to yours in some ways. No real diagnosis, but strong suspicions of CF. I first got sick at age 21, with a high normal sweat test, and pseudomonas pneumonia (a telltale sign of CF). I was on IV meds for 2 weeks. And then the usual lung manifestations ie: frequent infections, bleeding, declining lung function, and the acquiring of multiple bacterias like staph and MAC.

When the genetic test first came out, they found one gene. My doctors always suspected CF, but I would waver between thinking "maybe I do have it", to "I absolutely don't have it." Then I decided NOT to get the full test when it became available, because I liked thinking I didn't have it. And I was lucky to have great insurance that paid for anything the doctors ordered. So for me, a diagnosis wouldn't have changed anything.

Last year, when I signed up for an amazing California program (that hopefully won't be cut) that would give me peace of mind in case I ever found myself without insurance, they sent me for the genetic test. They found the second gene, and at this point I was thrilled. Because it meant that I could join this special program (my insurance had increased in one year from $500 per month to $1500 per month and was going up again possibly to $2000.)

So now it's actually a good thing to know that I do have CF. And if I had tested negative, I would have had all the same symptoms, but without essential medical coverage. I can't live in denial any more. And the good news is, if there is ever any shot of a new treatment or cure, it is imperative to know what the mutations are.

The CF center that I was sent to thought I was crazy when I whooped with joy when they told me that I did indeed have CF. After living with the perpetual fear of not having good coverage, this was great news.

So, welcome. And you will love the people here. This forum is amazing. And soon you'll find yourself wanting to jump in on everything too.
 
N

Nightwriter

New member
Hi Shelly,

Happy to see you here. There are so many of us that are just like you, so you will see that people will completely understand all that you are going through. Plus so many people can offer you valuable tips whether it is how you can take back some control over a disease that thinks it has a mind of it's own -- or finding ways to save time off a long and tedious treatment routine.

My case is similar to yours in some ways. No real diagnosis, but strong suspicions of CF. I first got sick at age 21, with a high normal sweat test, and pseudomonas pneumonia (a telltale sign of CF). I was on IV meds for 2 weeks. And then the usual lung manifestations ie: frequent infections, bleeding, declining lung function, and the acquiring of multiple bacterias like staph and MAC.

When the genetic test first came out, they found one gene. My doctors always suspected CF, but I would waver between thinking "maybe I do have it", to "I absolutely don't have it." Then I decided NOT to get the full test when it became available, because I liked thinking I didn't have it. And I was lucky to have great insurance that paid for anything the doctors ordered. So for me, a diagnosis wouldn't have changed anything.

Last year, when I signed up for an amazing California program (that hopefully won't be cut) that would give me peace of mind in case I ever found myself without insurance, they sent me for the genetic test. They found the second gene, and at this point I was thrilled. Because it meant that I could join this special program (my insurance had increased in one year from $500 per month to $1500 per month and was going up again possibly to $2000.)

So now it's actually a good thing to know that I do have CF. And if I had tested negative, I would have had all the same symptoms, but without essential medical coverage. I can't live in denial any more. And the good news is, if there is ever any shot of a new treatment or cure, it is imperative to know what the mutations are.

The CF center that I was sent to thought I was crazy when I whooped with joy when they told me that I did indeed have CF. After living with the perpetual fear of not having good coverage, this was great news.

So, welcome. And you will love the people here. This forum is amazing. And soon you'll find yourself wanting to jump in on everything too.
 
N

Nightwriter

New member
Hi Shelly,
<br />
<br />Happy to see you here. There are so many of us that are just like you, so you will see that people will completely understand all that you are going through. Plus so many people can offer you valuable tips whether it is how you can take back some control over a disease that thinks it has a mind of it's own -- or finding ways to save time off a long and tedious treatment routine.
<br />
<br />My case is similar to yours in some ways. No real diagnosis, but strong suspicions of CF. I first got sick at age 21, with a high normal sweat test, and pseudomonas pneumonia (a telltale sign of CF). I was on IV meds for 2 weeks. And then the usual lung manifestations ie: frequent infections, bleeding, declining lung function, and the acquiring of multiple bacterias like staph and MAC.
<br />
<br />When the genetic test first came out, they found one gene. My doctors always suspected CF, but I would waver between thinking "maybe I do have it", to "I absolutely don't have it." Then I decided NOT to get the full test when it became available, because I liked thinking I didn't have it. And I was lucky to have great insurance that paid for anything the doctors ordered. So for me, a diagnosis wouldn't have changed anything.
<br />
<br />Last year, when I signed up for an amazing California program (that hopefully won't be cut) that would give me peace of mind in case I ever found myself without insurance, they sent me for the genetic test. They found the second gene, and at this point I was thrilled. Because it meant that I could join this special program (my insurance had increased in one year from $500 per month to $1500 per month and was going up again possibly to $2000.)
<br />
<br />So now it's actually a good thing to know that I do have CF. And if I had tested negative, I would have had all the same symptoms, but without essential medical coverage. I can't live in denial any more. And the good news is, if there is ever any shot of a new treatment or cure, it is imperative to know what the mutations are.
<br />
<br />The CF center that I was sent to thought I was crazy when I whooped with joy when they told me that I did indeed have CF. After living with the perpetual fear of not having good coverage, this was great news.
<br />
<br />So, welcome. And you will love the people here. This forum is amazing. And soon you'll find yourself wanting to jump in on everything too.
<br />
<br />
 
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