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New and bewildered

K

kayleesgrandma

New member
Hello Sarah, welcome to the site. You have come to a great place, and you will be surprised at the friendships you will develope here in the near future! My granddaughter has your gene type, and so far we are keeping our fingers crossed because she has not gone into the hospital. She wasn't diagonosed untill she was over a year old. Do as the others said, find a good clinic, and start being aggressive with your treatment. One other thing---don't read anything that is more than 5 yrs old without knowing that EVERYTHING about CF is moving fast. We are finding new therapy's yearly and things have changed so much! Your quality of life can be much improved by being proactive. And this site is another way of fighting--everyone pools their information and passes it on.

So welcome, I look forward to hearing more from you. And I am sorry about your brother--how tragic! <img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
Hello Sarah, welcome to the site. You have come to a great place, and you will be surprised at the friendships you will develope here in the near future! My granddaughter has your gene type, and so far we are keeping our fingers crossed because she has not gone into the hospital. She wasn't diagonosed untill she was over a year old. Do as the others said, find a good clinic, and start being aggressive with your treatment. One other thing---don't read anything that is more than 5 yrs old without knowing that EVERYTHING about CF is moving fast. We are finding new therapy's yearly and things have changed so much! Your quality of life can be much improved by being proactive. And this site is another way of fighting--everyone pools their information and passes it on.

So welcome, I look forward to hearing more from you. And I am sorry about your brother--how tragic! <img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
Hello Sarah, welcome to the site. You have come to a great place, and you will be surprised at the friendships you will develope here in the near future! My granddaughter has your gene type, and so far we are keeping our fingers crossed because she has not gone into the hospital. She wasn't diagonosed untill she was over a year old. Do as the others said, find a good clinic, and start being aggressive with your treatment. One other thing---don't read anything that is more than 5 yrs old without knowing that EVERYTHING about CF is moving fast. We are finding new therapy's yearly and things have changed so much! Your quality of life can be much improved by being proactive. And this site is another way of fighting--everyone pools their information and passes it on.

So welcome, I look forward to hearing more from you. And I am sorry about your brother--how tragic! <img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
Hello Sarah, welcome to the site. You have come to a great place, and you will be surprised at the friendships you will develope here in the near future! My granddaughter has your gene type, and so far we are keeping our fingers crossed because she has not gone into the hospital. She wasn't diagonosed untill she was over a year old. Do as the others said, find a good clinic, and start being aggressive with your treatment. One other thing---don't read anything that is more than 5 yrs old without knowing that EVERYTHING about CF is moving fast. We are finding new therapy's yearly and things have changed so much! Your quality of life can be much improved by being proactive. And this site is another way of fighting--everyone pools their information and passes it on.

So welcome, I look forward to hearing more from you. And I am sorry about your brother--how tragic! <img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
Hello Sarah, welcome to the site. You have come to a great place, and you will be surprised at the friendships you will develope here in the near future! My granddaughter has your gene type, and so far we are keeping our fingers crossed because she has not gone into the hospital. She wasn't diagonosed untill she was over a year old. Do as the others said, find a good clinic, and start being aggressive with your treatment. One other thing---don't read anything that is more than 5 yrs old without knowing that EVERYTHING about CF is moving fast. We are finding new therapy's yearly and things have changed so much! Your quality of life can be much improved by being proactive. And this site is another way of fighting--everyone pools their information and passes it on.

So welcome, I look forward to hearing more from you. And I am sorry about your brother--how tragic! <img src="i/expressions/heart.gif" border="0">
 
K

kayleesgrandma

New member
Hello Sarah, welcome to the site. You have come to a great place, and you will be surprised at the friendships you will develope here in the near future! My granddaughter has your gene type, and so far we are keeping our fingers crossed because she has not gone into the hospital. She wasn't diagonosed untill she was over a year old. Do as the others said, find a good clinic, and start being aggressive with your treatment. One other thing---don't read anything that is more than 5 yrs old without knowing that EVERYTHING about CF is moving fast. We are finding new therapy's yearly and things have changed so much! Your quality of life can be much improved by being proactive. And this site is another way of fighting--everyone pools their information and passes it on.

So welcome, I look forward to hearing more from you. And I am sorry about your brother--how tragic! <img src="i/expressions/heart.gif" border="0">
 
S

schmunks

New member
I really did'nt expect to hear that to be diagnosed when it was too late and after being ill for so long was not a rare occurance!

I just can't believe that to have the pseudo and staph and sinus problems they did'nt see it! If you go on a search on the internet for those infections CF sites are popping up all the time i saw them myself, and now wished i'd gone further down that road.

I know that I can't change whats done but I feel really angry that they had such a Cavalier attitude to us when we asked about a lung transplant and that we thought there must be more to it and they were'nt doing enough! <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I don't think anger helps you move on but it is so frustrating!<img src="i/expressions/face-icon-small-frown.gif" border="0">
My brother was the one that I would always turn to for advice, he'd know what to do!<img src="i/expressions/rose.gif" border="0">


Thanks
Sarah x
 
S

schmunks

New member
I really did'nt expect to hear that to be diagnosed when it was too late and after being ill for so long was not a rare occurance!

I just can't believe that to have the pseudo and staph and sinus problems they did'nt see it! If you go on a search on the internet for those infections CF sites are popping up all the time i saw them myself, and now wished i'd gone further down that road.

I know that I can't change whats done but I feel really angry that they had such a Cavalier attitude to us when we asked about a lung transplant and that we thought there must be more to it and they were'nt doing enough! <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I don't think anger helps you move on but it is so frustrating!<img src="i/expressions/face-icon-small-frown.gif" border="0">
My brother was the one that I would always turn to for advice, he'd know what to do!<img src="i/expressions/rose.gif" border="0">


Thanks
Sarah x
 
S

schmunks

New member
I really did'nt expect to hear that to be diagnosed when it was too late and after being ill for so long was not a rare occurance!

I just can't believe that to have the pseudo and staph and sinus problems they did'nt see it! If you go on a search on the internet for those infections CF sites are popping up all the time i saw them myself, and now wished i'd gone further down that road.

I know that I can't change whats done but I feel really angry that they had such a Cavalier attitude to us when we asked about a lung transplant and that we thought there must be more to it and they were'nt doing enough! <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I don't think anger helps you move on but it is so frustrating!<img src="i/expressions/face-icon-small-frown.gif" border="0">
My brother was the one that I would always turn to for advice, he'd know what to do!<img src="i/expressions/rose.gif" border="0">


Thanks
Sarah x
 
S

schmunks

New member
I really did'nt expect to hear that to be diagnosed when it was too late and after being ill for so long was not a rare occurance!

I just can't believe that to have the pseudo and staph and sinus problems they did'nt see it! If you go on a search on the internet for those infections CF sites are popping up all the time i saw them myself, and now wished i'd gone further down that road.

I know that I can't change whats done but I feel really angry that they had such a Cavalier attitude to us when we asked about a lung transplant and that we thought there must be more to it and they were'nt doing enough! <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I don't think anger helps you move on but it is so frustrating!<img src="i/expressions/face-icon-small-frown.gif" border="0">
My brother was the one that I would always turn to for advice, he'd know what to do!<img src="i/expressions/rose.gif" border="0">


Thanks
Sarah x
 
S

schmunks

New member
I really did'nt expect to hear that to be diagnosed when it was too late and after being ill for so long was not a rare occurance!

I just can't believe that to have the pseudo and staph and sinus problems they did'nt see it! If you go on a search on the internet for those infections CF sites are popping up all the time i saw them myself, and now wished i'd gone further down that road.

I know that I can't change whats done but I feel really angry that they had such a Cavalier attitude to us when we asked about a lung transplant and that we thought there must be more to it and they were'nt doing enough! <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I don't think anger helps you move on but it is so frustrating!<img src="i/expressions/face-icon-small-frown.gif" border="0">
My brother was the one that I would always turn to for advice, he'd know what to do!<img src="i/expressions/rose.gif" border="0">


Thanks
Sarah x
 
S

schmunks

New member
I really did'nt expect to hear that to be diagnosed when it was too late and after being ill for so long was not a rare occurance!

I just can't believe that to have the pseudo and staph and sinus problems they did'nt see it! If you go on a search on the internet for those infections CF sites are popping up all the time i saw them myself, and now wished i'd gone further down that road.

I know that I can't change whats done but I feel really angry that they had such a Cavalier attitude to us when we asked about a lung transplant and that we thought there must be more to it and they were'nt doing enough! <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I don't think anger helps you move on but it is so frustrating!<img src="i/expressions/face-icon-small-frown.gif" border="0">
My brother was the one that I would always turn to for advice, he'd know what to do!<img src="i/expressions/rose.gif" border="0">


Thanks
Sarah x
 
N

NoExcuses

New member
One thing I've learned with CF is that all doctors are not created equally.

We like to think so, because that would be mean that we all are getting equal care. But the reality is, that simply isn't the case.

If you have a moment, check out this article in the New Yorker. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=1">http://www.newyorker.com/archi...6fa_fact?currentPage=1</a>
 
N

NoExcuses

New member
One thing I've learned with CF is that all doctors are not created equally.

We like to think so, because that would be mean that we all are getting equal care. But the reality is, that simply isn't the case.

If you have a moment, check out this article in the New Yorker. <a target=_blank class=ftalternatingbarlinklarge href="http://www.newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=1">http://www.newyorker.com/archi...6fa_fact?currentPage=1</a>
 
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