HELP...I don't know what else to do...

suziecoffeebean

New member
So I have one more question before I type this all later. I have to be at something all night tonight til about 9 after work. Apparently they are being seen at the CF care center at UK in lexington. I am pretty sure it is accredited. The doctor there told the kids that he has a lot of patients in their 70's with CF that are in better shape than he is. I have never even heard of people living into their 70's with this disease. How true is this??? Will read that link later thanks...any info would be helpful. I been trying to read as much as I can about it everyday and it seems to only be the tip of the iceberg...
 

Ratatosk

Administrator
Staff member
According to the cff.org site it is an accreditted facility. They appear to have a peds and adult clinic. Not so sure about the LOTS of patients who are in their 70s, I do recall reading about one or two.
 

Ratatosk

Administrator
Staff member
According to the cff.org site it is an accreditted facility. They appear to have a peds and adult clinic. Not so sure about the LOTS of patients who are in their 70s, I do recall reading about one or two.
 

Ratatosk

Administrator
Staff member
According to the cff.org site it is an accreditted facility. They appear to have a peds and adult clinic. Not so sure about the LOTS of patients who are in their 70s, I do recall reading about one or two.
 

Ratatosk

Administrator
Staff member
According to the cff.org site it is an accreditted facility. They appear to have a peds and adult clinic. Not so sure about the LOTS of patients who are in their 70s, I do recall reading about one or two.
 

Ratatosk

Administrator
Staff member
According to the cff.org site it is an accreditted facility. They appear to have a peds and adult clinic. Not so sure about the LOTS of patients who are in their 70s, I do recall reading about one or two.
 

suziecoffeebean

New member
If I understand what I just read then Joe is a mild case but not Lauren. Lauren said they had a blow test? and that Joe was 85 and she was 60 something...which I am assuming is a PFT. If this is the case how could they tell her it is mild?? I don't know this is why I want to be there....OK I gotta run I will be back on here later...I feel all panicky and sick...
 

suziecoffeebean

New member
If I understand what I just read then Joe is a mild case but not Lauren. Lauren said they had a blow test? and that Joe was 85 and she was 60 something...which I am assuming is a PFT. If this is the case how could they tell her it is mild?? I don't know this is why I want to be there....OK I gotta run I will be back on here later...I feel all panicky and sick...
 

suziecoffeebean

New member
If I understand what I just read then Joe is a mild case but not Lauren. Lauren said they had a blow test? and that Joe was 85 and she was 60 something...which I am assuming is a PFT. If this is the case how could they tell her it is mild?? I don't know this is why I want to be there....OK I gotta run I will be back on here later...I feel all panicky and sick...
 

suziecoffeebean

New member
If I understand what I just read then Joe is a mild case but not Lauren. Lauren said they had a blow test? and that Joe was 85 and she was 60 something...which I am assuming is a PFT. If this is the case how could they tell her it is mild?? I don't know this is why I want to be there....OK I gotta run I will be back on here later...I feel all panicky and sick...
 

suziecoffeebean

New member
If I understand what I just read then Joe is a mild case but not Lauren. Lauren said they had a blow test? and that Joe was 85 and she was 60 something...which I am assuming is a PFT. If this is the case how could they tell her it is mild?? I don't know this is why I want to be there....OK I gotta run I will be back on here later...I feel all panicky and sick...
 

JORDYSMOM

New member
I think a lot of times docs tell people about the "success stories" - the older patients as a way of encouraging us. I know when Jordan was first dx his doc told us about a friend of his with CF who is 56. It is great that some people make it so far. We have people on this site in their 40's and 50's and I'm really glad for that. I just know that each person is different. We can't really predict how long anyone will live with or without CF.

The blow test is to check pulmon. function you are correct. Your siblings results are an example of how different each patient is. They are bro and sis and very diff results. I wish I could offer you something to calm your nerves. I'm sure you are still feeling helpless because you can't physically be with them. Hang in there!

Stacey
 

JORDYSMOM

New member
I think a lot of times docs tell people about the "success stories" - the older patients as a way of encouraging us. I know when Jordan was first dx his doc told us about a friend of his with CF who is 56. It is great that some people make it so far. We have people on this site in their 40's and 50's and I'm really glad for that. I just know that each person is different. We can't really predict how long anyone will live with or without CF.

The blow test is to check pulmon. function you are correct. Your siblings results are an example of how different each patient is. They are bro and sis and very diff results. I wish I could offer you something to calm your nerves. I'm sure you are still feeling helpless because you can't physically be with them. Hang in there!

Stacey
 

JORDYSMOM

New member
I think a lot of times docs tell people about the "success stories" - the older patients as a way of encouraging us. I know when Jordan was first dx his doc told us about a friend of his with CF who is 56. It is great that some people make it so far. We have people on this site in their 40's and 50's and I'm really glad for that. I just know that each person is different. We can't really predict how long anyone will live with or without CF.

The blow test is to check pulmon. function you are correct. Your siblings results are an example of how different each patient is. They are bro and sis and very diff results. I wish I could offer you something to calm your nerves. I'm sure you are still feeling helpless because you can't physically be with them. Hang in there!

Stacey
 

JORDYSMOM

New member
I think a lot of times docs tell people about the "success stories" - the older patients as a way of encouraging us. I know when Jordan was first dx his doc told us about a friend of his with CF who is 56. It is great that some people make it so far. We have people on this site in their 40's and 50's and I'm really glad for that. I just know that each person is different. We can't really predict how long anyone will live with or without CF.

The blow test is to check pulmon. function you are correct. Your siblings results are an example of how different each patient is. They are bro and sis and very diff results. I wish I could offer you something to calm your nerves. I'm sure you are still feeling helpless because you can't physically be with them. Hang in there!

Stacey
 

JORDYSMOM

New member
I think a lot of times docs tell people about the "success stories" - the older patients as a way of encouraging us. I know when Jordan was first dx his doc told us about a friend of his with CF who is 56. It is great that some people make it so far. We have people on this site in their 40's and 50's and I'm really glad for that. I just know that each person is different. We can't really predict how long anyone will live with or without CF.

The blow test is to check pulmon. function you are correct. Your siblings results are an example of how different each patient is. They are bro and sis and very diff results. I wish I could offer you something to calm your nerves. I'm sure you are still feeling helpless because you can't physically be with them. Hang in there!

Stacey
 

suziecoffeebean

New member
Oh please don't get me wrong. If this holds any truth at all then I am glad they were told this. I am just a firm believer in telling the truth. I don't want them having false hope.
So Lauren said that they will be doing 2 breathing treatments everyday and they put them on enzymes and some type of inhaler twice a day. And she also said that they were looking into getting them this thing that they would blow into to break up the mucous in the lungs<<not sure what this is? But anyhow, I know she was having a hard time remembering everything to tell me but I do know that they both feel better after going to the doctor. That whole comment just disturbed me because I didn't know 70's was an attainable age. I am totally ignorant to a lot of this stuff. Just now learning more about it. I guess they are doing genetic testing. I don't think they ever had the genetic testing done. Not real sure why. I am pretty sure they were diagnosed based on sweat tests and the fact that Lauren was hospitalized 3-4 times in a couple of months for pneumonia when she was first born. Then they tested us all and found it in Joe too. I guess they told Joe that his seems more like asthma than CF. <<see I don't think this should have been said either not knowing for sure. Lauren also said they both had positive sweat tests yesterday too.
Anyhow, which ever way since I can't be there I am glad they are getting what they need. At least I hope they are. It has to be better than what they were getting. If I find out anything else today I will let you all know. Thanks for letting me vent here.
 

suziecoffeebean

New member
Oh please don't get me wrong. If this holds any truth at all then I am glad they were told this. I am just a firm believer in telling the truth. I don't want them having false hope.
So Lauren said that they will be doing 2 breathing treatments everyday and they put them on enzymes and some type of inhaler twice a day. And she also said that they were looking into getting them this thing that they would blow into to break up the mucous in the lungs<<not sure what this is? But anyhow, I know she was having a hard time remembering everything to tell me but I do know that they both feel better after going to the doctor. That whole comment just disturbed me because I didn't know 70's was an attainable age. I am totally ignorant to a lot of this stuff. Just now learning more about it. I guess they are doing genetic testing. I don't think they ever had the genetic testing done. Not real sure why. I am pretty sure they were diagnosed based on sweat tests and the fact that Lauren was hospitalized 3-4 times in a couple of months for pneumonia when she was first born. Then they tested us all and found it in Joe too. I guess they told Joe that his seems more like asthma than CF. <<see I don't think this should have been said either not knowing for sure. Lauren also said they both had positive sweat tests yesterday too.
Anyhow, which ever way since I can't be there I am glad they are getting what they need. At least I hope they are. It has to be better than what they were getting. If I find out anything else today I will let you all know. Thanks for letting me vent here.
 

suziecoffeebean

New member
Oh please don't get me wrong. If this holds any truth at all then I am glad they were told this. I am just a firm believer in telling the truth. I don't want them having false hope.
So Lauren said that they will be doing 2 breathing treatments everyday and they put them on enzymes and some type of inhaler twice a day. And she also said that they were looking into getting them this thing that they would blow into to break up the mucous in the lungs<<not sure what this is? But anyhow, I know she was having a hard time remembering everything to tell me but I do know that they both feel better after going to the doctor. That whole comment just disturbed me because I didn't know 70's was an attainable age. I am totally ignorant to a lot of this stuff. Just now learning more about it. I guess they are doing genetic testing. I don't think they ever had the genetic testing done. Not real sure why. I am pretty sure they were diagnosed based on sweat tests and the fact that Lauren was hospitalized 3-4 times in a couple of months for pneumonia when she was first born. Then they tested us all and found it in Joe too. I guess they told Joe that his seems more like asthma than CF. <<see I don't think this should have been said either not knowing for sure. Lauren also said they both had positive sweat tests yesterday too.
Anyhow, which ever way since I can't be there I am glad they are getting what they need. At least I hope they are. It has to be better than what they were getting. If I find out anything else today I will let you all know. Thanks for letting me vent here.
 

suziecoffeebean

New member
Oh please don't get me wrong. If this holds any truth at all then I am glad they were told this. I am just a firm believer in telling the truth. I don't want them having false hope.
So Lauren said that they will be doing 2 breathing treatments everyday and they put them on enzymes and some type of inhaler twice a day. And she also said that they were looking into getting them this thing that they would blow into to break up the mucous in the lungs<<not sure what this is? But anyhow, I know she was having a hard time remembering everything to tell me but I do know that they both feel better after going to the doctor. That whole comment just disturbed me because I didn't know 70's was an attainable age. I am totally ignorant to a lot of this stuff. Just now learning more about it. I guess they are doing genetic testing. I don't think they ever had the genetic testing done. Not real sure why. I am pretty sure they were diagnosed based on sweat tests and the fact that Lauren was hospitalized 3-4 times in a couple of months for pneumonia when she was first born. Then they tested us all and found it in Joe too. I guess they told Joe that his seems more like asthma than CF. <<see I don't think this should have been said either not knowing for sure. Lauren also said they both had positive sweat tests yesterday too.
Anyhow, which ever way since I can't be there I am glad they are getting what they need. At least I hope they are. It has to be better than what they were getting. If I find out anything else today I will let you all know. Thanks for letting me vent here.
 
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