CF Clinic Complaints...Anyone Else??

Foody

New member
Carrie...we had a CF appt this past week that was difficult for other reasons but our clinic has separate days for pseudo...no other children are seen on the non-pseudo days and they seem to make every effort to take us back ASAP. That is just really risky what they are doing and I would find out who is the head DR and write him copying your own doctor. Explain how other clinics around the world have separate well and non-pseudo days.

Our was 2 1/2 hours and we saw 10 people!! I was so pissed...he is now aware enought to refuse the culture plus he had to give blood. In addition, even when things are fine and I have no questions their whole team still has to come in...2 nurses to weigh etc, resp therapist, DR, 2 PFT therapists, blood, back to resp therapist, nurse to just "check in with us", nutritionist, and finally to wrap it all up after he was tortured the social worker. It was like the first appt with a tornado of papers, new therapy ideas and tests!! I was ready to kill someone being in that room with a 4 year old boy Purelling his hands every five seconds because he can't stop touching everything and I'm not even a germ-a-phobe.

You are right they just can't see it from the parent's perspective sometimes...why couldn't they all enter like a team, listen to the answers to the questions they need to ask, do the tests and let us go!? These kids have it tough enough but to be held up that long at a germ filled hospital room...man.

I feel your pain!
 

Foody

New member
Carrie...we had a CF appt this past week that was difficult for other reasons but our clinic has separate days for pseudo...no other children are seen on the non-pseudo days and they seem to make every effort to take us back ASAP. That is just really risky what they are doing and I would find out who is the head DR and write him copying your own doctor. Explain how other clinics around the world have separate well and non-pseudo days.

Our was 2 1/2 hours and we saw 10 people!! I was so pissed...he is now aware enought to refuse the culture plus he had to give blood. In addition, even when things are fine and I have no questions their whole team still has to come in...2 nurses to weigh etc, resp therapist, DR, 2 PFT therapists, blood, back to resp therapist, nurse to just "check in with us", nutritionist, and finally to wrap it all up after he was tortured the social worker. It was like the first appt with a tornado of papers, new therapy ideas and tests!! I was ready to kill someone being in that room with a 4 year old boy Purelling his hands every five seconds because he can't stop touching everything and I'm not even a germ-a-phobe.

You are right they just can't see it from the parent's perspective sometimes...why couldn't they all enter like a team, listen to the answers to the questions they need to ask, do the tests and let us go!? These kids have it tough enough but to be held up that long at a germ filled hospital room...man.

I feel your pain!
 

Foody

New member
Carrie...we had a CF appt this past week that was difficult for other reasons but our clinic has separate days for pseudo...no other children are seen on the non-pseudo days and they seem to make every effort to take us back ASAP. That is just really risky what they are doing and I would find out who is the head DR and write him copying your own doctor. Explain how other clinics around the world have separate well and non-pseudo days.

Our was 2 1/2 hours and we saw 10 people!! I was so pissed...he is now aware enought to refuse the culture plus he had to give blood. In addition, even when things are fine and I have no questions their whole team still has to come in...2 nurses to weigh etc, resp therapist, DR, 2 PFT therapists, blood, back to resp therapist, nurse to just "check in with us", nutritionist, and finally to wrap it all up after he was tortured the social worker. It was like the first appt with a tornado of papers, new therapy ideas and tests!! I was ready to kill someone being in that room with a 4 year old boy Purelling his hands every five seconds because he can't stop touching everything and I'm not even a germ-a-phobe.

You are right they just can't see it from the parent's perspective sometimes...why couldn't they all enter like a team, listen to the answers to the questions they need to ask, do the tests and let us go!? These kids have it tough enough but to be held up that long at a germ filled hospital room...man.

I feel your pain!
 

Foody

New member
Carrie...we had a CF appt this past week that was difficult for other reasons but our clinic has separate days for pseudo...no other children are seen on the non-pseudo days and they seem to make every effort to take us back ASAP. That is just really risky what they are doing and I would find out who is the head DR and write him copying your own doctor. Explain how other clinics around the world have separate well and non-pseudo days.

Our was 2 1/2 hours and we saw 10 people!! I was so pissed...he is now aware enought to refuse the culture plus he had to give blood. In addition, even when things are fine and I have no questions their whole team still has to come in...2 nurses to weigh etc, resp therapist, DR, 2 PFT therapists, blood, back to resp therapist, nurse to just "check in with us", nutritionist, and finally to wrap it all up after he was tortured the social worker. It was like the first appt with a tornado of papers, new therapy ideas and tests!! I was ready to kill someone being in that room with a 4 year old boy Purelling his hands every five seconds because he can't stop touching everything and I'm not even a germ-a-phobe.

You are right they just can't see it from the parent's perspective sometimes...why couldn't they all enter like a team, listen to the answers to the questions they need to ask, do the tests and let us go!? These kids have it tough enough but to be held up that long at a germ filled hospital room...man.

I feel your pain!
 

Foody

New member
Carrie...we had a CF appt this past week that was difficult for other reasons but our clinic has separate days for pseudo...no other children are seen on the non-pseudo days and they seem to make every effort to take us back ASAP. That is just really risky what they are doing and I would find out who is the head DR and write him copying your own doctor. Explain how other clinics around the world have separate well and non-pseudo days.
<br />
<br />Our was 2 1/2 hours and we saw 10 people!! I was so pissed...he is now aware enought to refuse the culture plus he had to give blood. In addition, even when things are fine and I have no questions their whole team still has to come in...2 nurses to weigh etc, resp therapist, DR, 2 PFT therapists, blood, back to resp therapist, nurse to just "check in with us", nutritionist, and finally to wrap it all up after he was tortured the social worker. It was like the first appt with a tornado of papers, new therapy ideas and tests!! I was ready to kill someone being in that room with a 4 year old boy Purelling his hands every five seconds because he can't stop touching everything and I'm not even a germ-a-phobe.
<br />
<br />You are right they just can't see it from the parent's perspective sometimes...why couldn't they all enter like a team, listen to the answers to the questions they need to ask, do the tests and let us go!? These kids have it tough enough but to be held up that long at a germ filled hospital room...man.
<br />
<br />I feel your pain!
 
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