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Frustrated with "adult" transitions?
- Thread starter labellavita
- Start date
Frustrated with
labellavita,
<br />
<br />if they don't see this thread, PM either Mom2jazzy or Belache; they are both adults w/CF and get their care in NYC.
<br />
<br />I know there are others, but they are on both quite a bit and can give you advice/suggestions I'm sure.
labellavita,
<br />
<br />if they don't see this thread, PM either Mom2jazzy or Belache; they are both adults w/CF and get their care in NYC.
<br />
<br />I know there are others, but they are on both quite a bit and can give you advice/suggestions I'm sure.
Frustrated with
I had the same problem here in Romania. Two years ago it was decided that adult CF patients should move away from the children clinic to adult hospitals.
I was transfered to a pneumology hospital and it was a nightmare. There were several problems, the biggest being tha complete lack of experience with CF. They only had one other CF case ever !
They treated me like I had TB or asthma or whatever they were used to. They didn't have an isolation ward which I needed for my Pseudomonas. No knowledge whatsoever about the digestive problem and the diminished secretion of pancreatic enzymes. Or any other problems related with CF other than the respiratory ones. The medication was hilarious, they were giving the same weaker stuff I could have, and was, taking at home and I was amazed, amused and pissed-off at the same time. I went from bad to worse while in their care in the hospital, until finally, they decided to consult a "specialist", meaning me, and after changing with the medication I wanted (they didn't have specific CF meds like Toby or stronger IV's like Tazocin so they borrowed them from another patient who didn't need them anymore) I got better and got out alive from there. It was the first and, hopefully, the last time I went there.
The next time I needed IV's I went back to the children hospital, where there is an actual CF clinic, and pleaded with my doc to take me back, which he agreed and I lived happily ever after. <img src="i/expressions/face-icon-small-happy.gif" border="0">
I had the same problem here in Romania. Two years ago it was decided that adult CF patients should move away from the children clinic to adult hospitals.
I was transfered to a pneumology hospital and it was a nightmare. There were several problems, the biggest being tha complete lack of experience with CF. They only had one other CF case ever !
They treated me like I had TB or asthma or whatever they were used to. They didn't have an isolation ward which I needed for my Pseudomonas. No knowledge whatsoever about the digestive problem and the diminished secretion of pancreatic enzymes. Or any other problems related with CF other than the respiratory ones. The medication was hilarious, they were giving the same weaker stuff I could have, and was, taking at home and I was amazed, amused and pissed-off at the same time. I went from bad to worse while in their care in the hospital, until finally, they decided to consult a "specialist", meaning me, and after changing with the medication I wanted (they didn't have specific CF meds like Toby or stronger IV's like Tazocin so they borrowed them from another patient who didn't need them anymore) I got better and got out alive from there. It was the first and, hopefully, the last time I went there.
The next time I needed IV's I went back to the children hospital, where there is an actual CF clinic, and pleaded with my doc to take me back, which he agreed and I lived happily ever after. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Frustrated with
I had the same problem here in Romania. Two years ago it was decided that adult CF patients should move away from the children clinic to adult hospitals.
I was transfered to a pneumology hospital and it was a nightmare. There were several problems, the biggest being tha complete lack of experience with CF. They only had one other CF case ever !
They treated me like I had TB or asthma or whatever they were used to. They didn't have an isolation ward which I needed for my Pseudomonas. No knowledge whatsoever about the digestive problem and the diminished secretion of pancreatic enzymes. Or any other problems related with CF other than the respiratory ones. The medication was hilarious, they were giving the same weaker stuff I could have, and was, taking at home and I was amazed, amused and pissed-off at the same time. I went from bad to worse while in their care in the hospital, until finally, they decided to consult a "specialist", meaning me, and after changing with the medication I wanted (they didn't have specific CF meds like Toby or stronger IV's like Tazocin so they borrowed them from another patient who didn't need them anymore) I got better and got out alive from there. It was the first and, hopefully, the last time I went there.
The next time I needed IV's I went back to the children hospital, where there is an actual CF clinic, and pleaded with my doc to take me back, which he agreed and I lived happily ever after. <img src="i/expressions/face-icon-small-happy.gif" border="0">
I had the same problem here in Romania. Two years ago it was decided that adult CF patients should move away from the children clinic to adult hospitals.
I was transfered to a pneumology hospital and it was a nightmare. There were several problems, the biggest being tha complete lack of experience with CF. They only had one other CF case ever !
They treated me like I had TB or asthma or whatever they were used to. They didn't have an isolation ward which I needed for my Pseudomonas. No knowledge whatsoever about the digestive problem and the diminished secretion of pancreatic enzymes. Or any other problems related with CF other than the respiratory ones. The medication was hilarious, they were giving the same weaker stuff I could have, and was, taking at home and I was amazed, amused and pissed-off at the same time. I went from bad to worse while in their care in the hospital, until finally, they decided to consult a "specialist", meaning me, and after changing with the medication I wanted (they didn't have specific CF meds like Toby or stronger IV's like Tazocin so they borrowed them from another patient who didn't need them anymore) I got better and got out alive from there. It was the first and, hopefully, the last time I went there.
The next time I needed IV's I went back to the children hospital, where there is an actual CF clinic, and pleaded with my doc to take me back, which he agreed and I lived happily ever after. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Frustrated with
I had the same problem here in Romania. Two years ago it was decided that adult CF patients should move away from the children clinic to adult hospitals.
I was transfered to a pneumology hospital and it was a nightmare. There were several problems, the biggest being tha complete lack of experience with CF. They only had one other CF case ever !
They treated me like I had TB or asthma or whatever they were used to. They didn't have an isolation ward which I needed for my Pseudomonas. No knowledge whatsoever about the digestive problem and the diminished secretion of pancreatic enzymes. Or any other problems related with CF other than the respiratory ones. The medication was hilarious, they were giving the same weaker stuff I could have, and was, taking at home and I was amazed, amused and pissed-off at the same time. I went from bad to worse while in their care in the hospital, until finally, they decided to consult a "specialist", meaning me, and after changing with the medication I wanted (they didn't have specific CF meds like Toby or stronger IV's like Tazocin so they borrowed them from another patient who didn't need them anymore) I got better and got out alive from there. It was the first and, hopefully, the last time I went there.
The next time I needed IV's I went back to the children hospital, where there is an actual CF clinic, and pleaded with my doc to take me back, which he agreed and I lived happily ever after. <img src="i/expressions/face-icon-small-happy.gif" border="0">
I had the same problem here in Romania. Two years ago it was decided that adult CF patients should move away from the children clinic to adult hospitals.
I was transfered to a pneumology hospital and it was a nightmare. There were several problems, the biggest being tha complete lack of experience with CF. They only had one other CF case ever !
They treated me like I had TB or asthma or whatever they were used to. They didn't have an isolation ward which I needed for my Pseudomonas. No knowledge whatsoever about the digestive problem and the diminished secretion of pancreatic enzymes. Or any other problems related with CF other than the respiratory ones. The medication was hilarious, they were giving the same weaker stuff I could have, and was, taking at home and I was amazed, amused and pissed-off at the same time. I went from bad to worse while in their care in the hospital, until finally, they decided to consult a "specialist", meaning me, and after changing with the medication I wanted (they didn't have specific CF meds like Toby or stronger IV's like Tazocin so they borrowed them from another patient who didn't need them anymore) I got better and got out alive from there. It was the first and, hopefully, the last time I went there.
The next time I needed IV's I went back to the children hospital, where there is an actual CF clinic, and pleaded with my doc to take me back, which he agreed and I lived happily ever after. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Frustrated with
I had the same problem here in Romania. Two years ago it was decided that adult CF patients should move away from the children clinic to adult hospitals.
I was transfered to a pneumology hospital and it was a nightmare. There were several problems, the biggest being tha complete lack of experience with CF. They only had one other CF case ever !
They treated me like I had TB or asthma or whatever they were used to. They didn't have an isolation ward which I needed for my Pseudomonas. No knowledge whatsoever about the digestive problem and the diminished secretion of pancreatic enzymes. Or any other problems related with CF other than the respiratory ones. The medication was hilarious, they were giving the same weaker stuff I could have, and was, taking at home and I was amazed, amused and pissed-off at the same time. I went from bad to worse while in their care in the hospital, until finally, they decided to consult a "specialist", meaning me, and after changing with the medication I wanted (they didn't have specific CF meds like Toby or stronger IV's like Tazocin so they borrowed them from another patient who didn't need them anymore) I got better and got out alive from there. It was the first and, hopefully, the last time I went there.
The next time I needed IV's I went back to the children hospital, where there is an actual CF clinic, and pleaded with my doc to take me back, which he agreed and I lived happily ever after. <img src="i/expressions/face-icon-small-happy.gif" border="0">
I had the same problem here in Romania. Two years ago it was decided that adult CF patients should move away from the children clinic to adult hospitals.
I was transfered to a pneumology hospital and it was a nightmare. There were several problems, the biggest being tha complete lack of experience with CF. They only had one other CF case ever !
They treated me like I had TB or asthma or whatever they were used to. They didn't have an isolation ward which I needed for my Pseudomonas. No knowledge whatsoever about the digestive problem and the diminished secretion of pancreatic enzymes. Or any other problems related with CF other than the respiratory ones. The medication was hilarious, they were giving the same weaker stuff I could have, and was, taking at home and I was amazed, amused and pissed-off at the same time. I went from bad to worse while in their care in the hospital, until finally, they decided to consult a "specialist", meaning me, and after changing with the medication I wanted (they didn't have specific CF meds like Toby or stronger IV's like Tazocin so they borrowed them from another patient who didn't need them anymore) I got better and got out alive from there. It was the first and, hopefully, the last time I went there.
The next time I needed IV's I went back to the children hospital, where there is an actual CF clinic, and pleaded with my doc to take me back, which he agreed and I lived happily ever after. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Frustrated with
I had the same problem here in Romania. Two years ago it was decided that adult CF patients should move away from the children clinic to adult hospitals.
<br />I was transfered to a pneumology hospital and it was a nightmare. There were several problems, the biggest being tha complete lack of experience with CF. They only had one other CF case ever !
<br />
<br />They treated me like I had TB or asthma or whatever they were used to. They didn't have an isolation ward which I needed for my Pseudomonas. No knowledge whatsoever about the digestive problem and the diminished secretion of pancreatic enzymes. Or any other problems related with CF other than the respiratory ones. The medication was hilarious, they were giving the same weaker stuff I could have, and was, taking at home and I was amazed, amused and pissed-off at the same time. I went from bad to worse while in their care in the hospital, until finally, they decided to consult a "specialist", meaning me, and after changing with the medication I wanted (they didn't have specific CF meds like Toby or stronger IV's like Tazocin so they borrowed them from another patient who didn't need them anymore) I got better and got out alive from there. It was the first and, hopefully, the last time I went there.
<br />
<br />The next time I needed IV's I went back to the children hospital, where there is an actual CF clinic, and pleaded with my doc to take me back, which he agreed and I lived happily ever after. <img src="i/expressions/face-icon-small-happy.gif" border="0">
I had the same problem here in Romania. Two years ago it was decided that adult CF patients should move away from the children clinic to adult hospitals.
<br />I was transfered to a pneumology hospital and it was a nightmare. There were several problems, the biggest being tha complete lack of experience with CF. They only had one other CF case ever !
<br />
<br />They treated me like I had TB or asthma or whatever they were used to. They didn't have an isolation ward which I needed for my Pseudomonas. No knowledge whatsoever about the digestive problem and the diminished secretion of pancreatic enzymes. Or any other problems related with CF other than the respiratory ones. The medication was hilarious, they were giving the same weaker stuff I could have, and was, taking at home and I was amazed, amused and pissed-off at the same time. I went from bad to worse while in their care in the hospital, until finally, they decided to consult a "specialist", meaning me, and after changing with the medication I wanted (they didn't have specific CF meds like Toby or stronger IV's like Tazocin so they borrowed them from another patient who didn't need them anymore) I got better and got out alive from there. It was the first and, hopefully, the last time I went there.
<br />
<br />The next time I needed IV's I went back to the children hospital, where there is an actual CF clinic, and pleaded with my doc to take me back, which he agreed and I lived happily ever after. <img src="i/expressions/face-icon-small-happy.gif" border="0">
Frustrated with
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>labellavita</b></i>
Was not very pleased with any of them. So now (as in, TODAY) I am moving to NYC... without any health care set up.
Thanks!</end quote></div>
There are 4 of us from here (that I know of) who go to St. Vincents Hospital in Manhattan. They have pediatric & adult in the same clinic. The doctors cover for each other, but I feel totally confident in both of them. When we get admitted to the hospital it is "technically" on the Pediatric floor, but most of their patients are usually CFers.
There is also a clinic at Columbia Presbyterian Hospital where we have a member here go. My clinic works very closely with Columbia. That is where patients are referred to or they are consulted with for difficult cases and transplant evaluations.
I have been going there for almost 35 years & I adore everyone. St. Vinny's is know for their exceptional CPT Program....
If you want more info on that please give me a shout. If not I highly recommend seeing Dr. Patricia Walker (adult program) & meeting Dr. Maria Berdella (pediatric program) there!!!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>labellavita</b></i>
Was not very pleased with any of them. So now (as in, TODAY) I am moving to NYC... without any health care set up.
Thanks!</end quote></div>
There are 4 of us from here (that I know of) who go to St. Vincents Hospital in Manhattan. They have pediatric & adult in the same clinic. The doctors cover for each other, but I feel totally confident in both of them. When we get admitted to the hospital it is "technically" on the Pediatric floor, but most of their patients are usually CFers.
There is also a clinic at Columbia Presbyterian Hospital where we have a member here go. My clinic works very closely with Columbia. That is where patients are referred to or they are consulted with for difficult cases and transplant evaluations.
I have been going there for almost 35 years & I adore everyone. St. Vinny's is know for their exceptional CPT Program....
If you want more info on that please give me a shout. If not I highly recommend seeing Dr. Patricia Walker (adult program) & meeting Dr. Maria Berdella (pediatric program) there!!!
Frustrated with
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>labellavita</b></i>
Was not very pleased with any of them. So now (as in, TODAY) I am moving to NYC... without any health care set up.
Thanks!</end quote></div>
There are 4 of us from here (that I know of) who go to St. Vincents Hospital in Manhattan. They have pediatric & adult in the same clinic. The doctors cover for each other, but I feel totally confident in both of them. When we get admitted to the hospital it is "technically" on the Pediatric floor, but most of their patients are usually CFers.
There is also a clinic at Columbia Presbyterian Hospital where we have a member here go. My clinic works very closely with Columbia. That is where patients are referred to or they are consulted with for difficult cases and transplant evaluations.
I have been going there for almost 35 years & I adore everyone. St. Vinny's is know for their exceptional CPT Program....
If you want more info on that please give me a shout. If not I highly recommend seeing Dr. Patricia Walker (adult program) & meeting Dr. Maria Berdella (pediatric program) there!!!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>labellavita</b></i>
Was not very pleased with any of them. So now (as in, TODAY) I am moving to NYC... without any health care set up.
Thanks!</end quote></div>
There are 4 of us from here (that I know of) who go to St. Vincents Hospital in Manhattan. They have pediatric & adult in the same clinic. The doctors cover for each other, but I feel totally confident in both of them. When we get admitted to the hospital it is "technically" on the Pediatric floor, but most of their patients are usually CFers.
There is also a clinic at Columbia Presbyterian Hospital where we have a member here go. My clinic works very closely with Columbia. That is where patients are referred to or they are consulted with for difficult cases and transplant evaluations.
I have been going there for almost 35 years & I adore everyone. St. Vinny's is know for their exceptional CPT Program....
If you want more info on that please give me a shout. If not I highly recommend seeing Dr. Patricia Walker (adult program) & meeting Dr. Maria Berdella (pediatric program) there!!!
Frustrated with
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>labellavita</b></i>
Was not very pleased with any of them. So now (as in, TODAY) I am moving to NYC... without any health care set up.
Thanks!</end quote></div>
There are 4 of us from here (that I know of) who go to St. Vincents Hospital in Manhattan. They have pediatric & adult in the same clinic. The doctors cover for each other, but I feel totally confident in both of them. When we get admitted to the hospital it is "technically" on the Pediatric floor, but most of their patients are usually CFers.
There is also a clinic at Columbia Presbyterian Hospital where we have a member here go. My clinic works very closely with Columbia. That is where patients are referred to or they are consulted with for difficult cases and transplant evaluations.
I have been going there for almost 35 years & I adore everyone. St. Vinny's is know for their exceptional CPT Program....
If you want more info on that please give me a shout. If not I highly recommend seeing Dr. Patricia Walker (adult program) & meeting Dr. Maria Berdella (pediatric program) there!!!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>labellavita</b></i>
Was not very pleased with any of them. So now (as in, TODAY) I am moving to NYC... without any health care set up.
Thanks!</end quote></div>
There are 4 of us from here (that I know of) who go to St. Vincents Hospital in Manhattan. They have pediatric & adult in the same clinic. The doctors cover for each other, but I feel totally confident in both of them. When we get admitted to the hospital it is "technically" on the Pediatric floor, but most of their patients are usually CFers.
There is also a clinic at Columbia Presbyterian Hospital where we have a member here go. My clinic works very closely with Columbia. That is where patients are referred to or they are consulted with for difficult cases and transplant evaluations.
I have been going there for almost 35 years & I adore everyone. St. Vinny's is know for their exceptional CPT Program....
If you want more info on that please give me a shout. If not I highly recommend seeing Dr. Patricia Walker (adult program) & meeting Dr. Maria Berdella (pediatric program) there!!!
Frustrated with
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>labellavita</b></i>
Was not very pleased with any of them. So now (as in, TODAY) I am moving to NYC... without any health care set up.
Thanks!</end quote>
There are 4 of us from here (that I know of) who go to St. Vincents Hospital in Manhattan. They have pediatric & adult in the same clinic. The doctors cover for each other, but I feel totally confident in both of them. When we get admitted to the hospital it is "technically" on the Pediatric floor, but most of their patients are usually CFers.
There is also a clinic at Columbia Presbyterian Hospital where we have a member here go. My clinic works very closely with Columbia. That is where patients are referred to or they are consulted with for difficult cases and transplant evaluations.
I have been going there for almost 35 years & I adore everyone. St. Vinny's is know for their exceptional CPT Program....
If you want more info on that please give me a shout. If not I highly recommend seeing Dr. Patricia Walker (adult program) & meeting Dr. Maria Berdella (pediatric program) there!!!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>labellavita</b></i>
Was not very pleased with any of them. So now (as in, TODAY) I am moving to NYC... without any health care set up.
Thanks!</end quote>
There are 4 of us from here (that I know of) who go to St. Vincents Hospital in Manhattan. They have pediatric & adult in the same clinic. The doctors cover for each other, but I feel totally confident in both of them. When we get admitted to the hospital it is "technically" on the Pediatric floor, but most of their patients are usually CFers.
There is also a clinic at Columbia Presbyterian Hospital where we have a member here go. My clinic works very closely with Columbia. That is where patients are referred to or they are consulted with for difficult cases and transplant evaluations.
I have been going there for almost 35 years & I adore everyone. St. Vinny's is know for their exceptional CPT Program....
If you want more info on that please give me a shout. If not I highly recommend seeing Dr. Patricia Walker (adult program) & meeting Dr. Maria Berdella (pediatric program) there!!!
Frustrated with
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>labellavita</b></i>
<br />
<br /> Was not very pleased with any of them. So now (as in, TODAY) I am moving to NYC... without any health care set up.
<br />
<br />Thanks!</end quote>
<br />
<br />
<br />There are 4 of us from here (that I know of) who go to St. Vincents Hospital in Manhattan. They have pediatric & adult in the same clinic. The doctors cover for each other, but I feel totally confident in both of them. When we get admitted to the hospital it is "technically" on the Pediatric floor, but most of their patients are usually CFers.
<br />
<br />There is also a clinic at Columbia Presbyterian Hospital where we have a member here go. My clinic works very closely with Columbia. That is where patients are referred to or they are consulted with for difficult cases and transplant evaluations.
<br />
<br />I have been going there for almost 35 years & I adore everyone. St. Vinny's is know for their exceptional CPT Program....
<br />
<br />If you want more info on that please give me a shout. If not I highly recommend seeing Dr. Patricia Walker (adult program) & meeting Dr. Maria Berdella (pediatric program) there!!!
<br />
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>labellavita</b></i>
<br />
<br /> Was not very pleased with any of them. So now (as in, TODAY) I am moving to NYC... without any health care set up.
<br />
<br />Thanks!</end quote>
<br />
<br />
<br />There are 4 of us from here (that I know of) who go to St. Vincents Hospital in Manhattan. They have pediatric & adult in the same clinic. The doctors cover for each other, but I feel totally confident in both of them. When we get admitted to the hospital it is "technically" on the Pediatric floor, but most of their patients are usually CFers.
<br />
<br />There is also a clinic at Columbia Presbyterian Hospital where we have a member here go. My clinic works very closely with Columbia. That is where patients are referred to or they are consulted with for difficult cases and transplant evaluations.
<br />
<br />I have been going there for almost 35 years & I adore everyone. St. Vinny's is know for their exceptional CPT Program....
<br />
<br />If you want more info on that please give me a shout. If not I highly recommend seeing Dr. Patricia Walker (adult program) & meeting Dr. Maria Berdella (pediatric program) there!!!
<br />
labellavita
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labellavita
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thank you!
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labellavita
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Frustrated with
thank you!
thank you!
labellavita
New member
Frustrated with
thank you!
thank you!
labellavita
New member
Frustrated with
thank you!
thank you!