Going to cf clinic tmrw for the first time. Questions???

[Printer]

Taking notes is a great idea but if you can bring a small tape recorder, so much the better. I would suggest that you get the Nurse Practioner's or the Nurse's e-mail address so you can follow up, easily, with the questions that you are sure to have.
<br />
<br />Good luck.
<br />
<br />Bill

 

[welshwitch]

Hi Kendy,

Ditto to everything everyone has said above. Re: people doing fine with CF, it's true. CF is not the same disease it was 20 years ago. I myself am an example of a healthy 31 year old, working full time, making an incredible life for myself. I take my CF really seriously, ie I do all the meds, but I also don't make it a focus. It took me awhile to find the right mental balance, but I am finally starting to get it. It can be done. It can be done.

 

[welshwitch]

Hi Kendy,

Ditto to everything everyone has said above. Re: people doing fine with CF, it's true. CF is not the same disease it was 20 years ago. I myself am an example of a healthy 31 year old, working full time, making an incredible life for myself. I take my CF really seriously, ie I do all the meds, but I also don't make it a focus. It took me awhile to find the right mental balance, but I am finally starting to get it. It can be done. It can be done.

 

[welshwitch]

Hi Kendy,
<br />
<br />Ditto to everything everyone has said above. Re: people doing fine with CF, it's true. CF is not the same disease it was 20 years ago. I myself am an example of a healthy 31 year old, working full time, making an incredible life for myself. I take my CF really seriously, ie I do all the meds, but I also don't make it a focus. It took me awhile to find the right mental balance, but I am finally starting to get it. It can be done. It can be done.

 

[kendy]

Welshwitch, glad to hear you are doing well! It's to know there's a long life ahead for my little guy. Thanks for sharing your story.

 

[kendy]

Welshwitch, glad to hear you are doing well! It's to know there's a long life ahead for my little guy. Thanks for sharing your story.

 

[kendy]

Welshwitch, glad to hear you are doing well! It's to know there's a long life ahead for my little guy. Thanks for sharing your story.

 

[kendy]

Well four hours later we are done at the clinic. Wow, we met some wonderful drs, nurses, and social worker. They were very patient with us. I felt very prepared thanks to everyone here's good advice.

So they said Tyler looks A typical for CF. His first lung test of blowing into the tube was normal. They are not putting him on any meds right now. He had a chest xray and a lot of labs run. They are repeating the sweat test. So now we sit and wait.

 

[kendy]

Well four hours later we are done at the clinic. Wow, we met some wonderful drs, nurses, and social worker. They were very patient with us. I felt very prepared thanks to everyone here's good advice.

So they said Tyler looks A typical for CF. His first lung test of blowing into the tube was normal. They are not putting him on any meds right now. He had a chest xray and a lot of labs run. They are repeating the sweat test. So now we sit and wait.

 

[kendy]

Well four hours later we are done at the clinic. Wow, we met some wonderful drs, nurses, and social worker. They were very patient with us. I felt very prepared thanks to everyone here's good advice.
<br />
<br />So they said Tyler looks A typical for CF. His first lung test of blowing into the tube was normal. They are not putting him on any meds right now. He had a chest xray and a lot of labs run. They are repeating the sweat test. So now we sit and wait.

 

[kendy]

Karen, you are right we loved Jill and Julia. She did tell us about the support group so we will going to those. It was wonderful to see all the drs at once and they come to you. My son had the room all set up with his coloring books, DS, and card games. As the drs came in to talk my son was oblivious to what we were talking about cause he was so comfortable.

Thanks for your support. I will look you up on facebook.

 

[kendy]

Karen, you are right we loved Jill and Julia. She did tell us about the support group so we will going to those. It was wonderful to see all the drs at once and they come to you. My son had the room all set up with his coloring books, DS, and card games. As the drs came in to talk my son was oblivious to what we were talking about cause he was so comfortable.

Thanks for your support. I will look you up on facebook.

 

[kendy]

Karen, you are right we loved Jill and Julia. She did tell us about the support group so we will going to those. It was wonderful to see all the drs at once and they come to you. My son had the room all set up with his coloring books, DS, and card games. As the drs came in to talk my son was oblivious to what we were talking about cause he was so comfortable.
<br />
<br />Thanks for your support. I will look you up on facebook.

 

[MaryamsMommy]

Yes they are great!! Im sad that your son has CF but Im really happy that he will be getting his treatment at millers. Thats great that he has normal lung function right now. They will test his lung function?PFT at every visit. Are they aware that he has cultured MRSA? and was that from his sinuses? Did they swab him or do a sputum sample? If he does culture MRSA they will be moving his clinic times till late in the day on Tuesdays.. Usually Fridays are for Babies or children who have never cultured any Bacteria. When will your next visit be? There are a few moms on FB who Im friends with whos children are also seen at millers. It really helps to have a good support group. Looking forward to meeting you at our next parent Support Group.

Karen

 

[MaryamsMommy]

Yes they are great!! Im sad that your son has CF but Im really happy that he will be getting his treatment at millers. Thats great that he has normal lung function right now. They will test his lung function?PFT at every visit. Are they aware that he has cultured MRSA? and was that from his sinuses? Did they swab him or do a sputum sample? If he does culture MRSA they will be moving his clinic times till late in the day on Tuesdays.. Usually Fridays are for Babies or children who have never cultured any Bacteria. When will your next visit be? There are a few moms on FB who Im friends with whos children are also seen at millers. It really helps to have a good support group. Looking forward to meeting you at our next parent Support Group.

Karen

 

[MaryamsMommy]

Yes they are great!! Im sad that your son has CF but Im really happy that he will be getting his treatment at millers. Thats great that he has normal lung function right now. They will test his lung function?PFT at every visit. Are they aware that he has cultured MRSA? and was that from his sinuses? Did they swab him or do a sputum sample? If he does culture MRSA they will be moving his clinic times till late in the day on Tuesdays.. Usually Fridays are for Babies or children who have never cultured any Bacteria. When will your next visit be? There are a few moms on FB who Im friends with whos children are also seen at millers. It really helps to have a good support group. Looking forward to meeting you at our next parent Support Group.
<br />
<br />Karen

 

[kendy]

So they are repeating the sweat test so I don't know if they have actuall diagnosed him with it. I'm driving myself crazy now with every little cough, loose stool, stomach ach. It's like I'm waiting for him to start falling apart. They don't have him on any meds. And I'm trying to tell my self that's good but on the other hand his cough isn't getting better and I'm affraid it will get worse.

So i know I'm rambling but this is the only place I feel like I can speak my mind. I don't want to tell to many people yet to we really know what's going on.

 

[kendy]

So they are repeating the sweat test so I don't know if they have actuall diagnosed him with it. I'm driving myself crazy now with every little cough, loose stool, stomach ach. It's like I'm waiting for him to start falling apart. They don't have him on any meds. And I'm trying to tell my self that's good but on the other hand his cough isn't getting better and I'm affraid it will get worse.

So i know I'm rambling but this is the only place I feel like I can speak my mind. I don't want to tell to many people yet to we really know what's going on.

 

[kendy]

So they are repeating the sweat test so I don't know if they have actuall diagnosed him with it. I'm driving myself crazy now with every little cough, loose stool, stomach ach. It's like I'm waiting for him to start falling apart. They don't have him on any meds. And I'm trying to tell my self that's good but on the other hand his cough isn't getting better and I'm affraid it will get worse.
<br />
<br />So i know I'm rambling but this is the only place I feel like I can speak my mind. I don't want to tell to many people yet to we really know what's going on.

 

[kendy]

Karen, yes they one about MRSA he had a nasal swab that showed it. But he has been treated aggresively for it so they said it was ok to bring him in. They wanted to see him right away since we had just found out about cf but hadn't been told anything else. His ent has reswabed for MRSA to see if he got rid of it but I also know that it's very hard to get rid of. The lung test, the one where he tries to blow out candles was 112. I don't really know what that means but the dr said it was normal. We are suppose to go back in 3 weeks. We do the sweat test on Thursday.

Thanks!