Anyone go to Penn, Johns Hopkins, Hershey or Hahnemann Hospital?

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EmilysMomma

New member
I'm looking for some advice on any of these hospitals. I live in Delaware and the only accredited center we have here is AI Childrens Hospital (which I totally miss although not too much due to the fact that my daughter is a cf patient there now). When I turned 21 I couldn't go there anymore for obvious reasons and had to move on to our states only adult cf program at the local hospital. The difference in care is remarkable and there is only twenty some patients. I actually have to beg for a piccline when I'm sick, also when I am in the hospital I have to share a room on the general floor so I am put put with any random person (such as the lady with a staph infection on her foot last time) so thats one of the many reasons I've become really fed up and am seeking better care like I got and my daughter currently receives at an accredited center.

I'm 27 and I have a 5 year old with cf also and I really feel like I could be getting much better care to help me be here as long as possible.

What I'm really interested in is what these centers care teams consist of and if any include an endo of some sort that knows about cfrd. Currently I have to see a regular endo who just has no clue about cfrd, it was so hard to get my insulin pump but thats another story....Also do any of these care centers have a section for cf patients do you have to share rooms when you stay in the hospital??
Any advice or info on any of these hospitals would be much appreciated. At this point I do not mind driving an hour every 3 months if it means better care, and actually my husband works for Amtrak so we ride the train free so I could even use that option for transportation. Thanks in advance!
 
E

EmilysMomma

New member
I'm looking for some advice on any of these hospitals. I live in Delaware and the only accredited center we have here is AI Childrens Hospital (which I totally miss although not too much due to the fact that my daughter is a cf patient there now). When I turned 21 I couldn't go there anymore for obvious reasons and had to move on to our states only adult cf program at the local hospital. The difference in care is remarkable and there is only twenty some patients. I actually have to beg for a piccline when I'm sick, also when I am in the hospital I have to share a room on the general floor so I am put put with any random person (such as the lady with a staph infection on her foot last time) so thats one of the many reasons I've become really fed up and am seeking better care like I got and my daughter currently receives at an accredited center.

I'm 27 and I have a 5 year old with cf also and I really feel like I could be getting much better care to help me be here as long as possible.

What I'm really interested in is what these centers care teams consist of and if any include an endo of some sort that knows about cfrd. Currently I have to see a regular endo who just has no clue about cfrd, it was so hard to get my insulin pump but thats another story....Also do any of these care centers have a section for cf patients do you have to share rooms when you stay in the hospital??
Any advice or info on any of these hospitals would be much appreciated. At this point I do not mind driving an hour every 3 months if it means better care, and actually my husband works for Amtrak so we ride the train free so I could even use that option for transportation. Thanks in advance!
 
E

EmilysMomma

New member
I'm looking for some advice on any of these hospitals. I live in Delaware and the only accredited center we have here is AI Childrens Hospital (which I totally miss although not too much due to the fact that my daughter is a cf patient there now). When I turned 21 I couldn't go there anymore for obvious reasons and had to move on to our states only adult cf program at the local hospital. The difference in care is remarkable and there is only twenty some patients. I actually have to beg for a piccline when I'm sick, also when I am in the hospital I have to share a room on the general floor so I am put put with any random person (such as the lady with a staph infection on her foot last time) so thats one of the many reasons I've become really fed up and am seeking better care like I got and my daughter currently receives at an accredited center.
<br />
<br />I'm 27 and I have a 5 year old with cf also and I really feel like I could be getting much better care to help me be here as long as possible.
<br />
<br />What I'm really interested in is what these centers care teams consist of and if any include an endo of some sort that knows about cfrd. Currently I have to see a regular endo who just has no clue about cfrd, it was so hard to get my insulin pump but thats another story....Also do any of these care centers have a section for cf patients do you have to share rooms when you stay in the hospital??
<br />Any advice or info on any of these hospitals would be much appreciated. At this point I do not mind driving an hour every 3 months if it means better care, and actually my husband works for Amtrak so we ride the train free so I could even use that option for transportation. Thanks in advance!
 
L

LouLou

New member
Hi Laura, My son and I (we both have cf too!) were cared for at Penn before we moved to CT. I highly recommend them. And yes you'll only have private rooms.
 
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LouLou

New member
Hi Laura, My son and I (we both have cf too!) were cared for at Penn before we moved to CT. I highly recommend them. And yes you'll only have private rooms.
 
L

LouLou

New member
Hi Laura, My son and I (we both have cf too!) were cared for at Penn before we moved to CT. I highly recommend them. And yes you'll only have private rooms.
 
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EmilysMomma

New member
Thanks Lauren, nice to meet you! you're the first cf mom w/cf child I've come across! Thanks for the rec they are top on my list.
 
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EmilysMomma

New member
Thanks Lauren, nice to meet you! you're the first cf mom w/cf child I've come across! Thanks for the rec they are top on my list.
 
E

EmilysMomma

New member
Thanks Lauren, nice to meet you! you're the first cf mom w/cf child I've come across! Thanks for the rec they are top on my list.
 
M

moxie1

Guest
I go to Hershey Medical center and I love my cf doctor.

I don't have any other problems beside lung issues, so I don't know how to advise you there, but during hospital stays, you are in a private room on a respiratory floor. If you have a bad bug, they gown up, etc when coming into your room.

I think the thing that I don't like is that in the hospital, exercise is totally ignored. I would like to be scheduled to have treadmill time, etc. I am so active at home, that I feel like I decline each day I am in the hospital just because of being sedentary.
 
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moxie1

Guest
I go to Hershey Medical center and I love my cf doctor.

I don't have any other problems beside lung issues, so I don't know how to advise you there, but during hospital stays, you are in a private room on a respiratory floor. If you have a bad bug, they gown up, etc when coming into your room.

I think the thing that I don't like is that in the hospital, exercise is totally ignored. I would like to be scheduled to have treadmill time, etc. I am so active at home, that I feel like I decline each day I am in the hospital just because of being sedentary.
 
M

moxie1

Guest
I go to Hershey Medical center and I love my cf doctor.
<br />
<br />I don't have any other problems beside lung issues, so I don't know how to advise you there, but during hospital stays, you are in a private room on a respiratory floor. If you have a bad bug, they gown up, etc when coming into your room.
<br />
<br />I think the thing that I don't like is that in the hospital, exercise is totally ignored. I would like to be scheduled to have treadmill time, etc. I am so active at home, that I feel like I decline each day I am in the hospital just because of being sedentary.
 
F

falbie13

New member
I have been going to Hopkins my entire life ( im 29 now). The pediatric team is wonderful for your daughters care. The physicians are well known in their field. They have PT, RT, nutrition just for peds that are at clinic. As for the adult side, the team is WONDERFUL! They are very comfortable with dealing with CFRD, they work hand in hand with the outpatient diabetes NPs who have taken charge of my CFRD and have it tighly controlled even though I eat like crazy. The nursing team is awesome. I always got a call back within a few hours for non emergent things and there is a way to get ahold of them immediately if needed. All CF patients go to a specific floor with private rooms. The floor deals with alot of CF patients and they are very aware of gowning up, washing hands, etc. PT is constantly on the floor getting you up and exercising or giving you CPT. The nutrition people on the floor make a point to get you food that you like, just not boring hospital food. In fact, the nurses will bring you homecooked cookies and brownies, pizza, whatever you want basically.
I guess you can tell, I am passionate about Hopkins. I no longer see the CF team because I am followed by transplant, but I see the team every now and then. In fact I saw my dietitian today and she ran up and gave me a huge hug and begged me to come visit. You are def. a person there not just a patient!
 
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falbie13

New member
I have been going to Hopkins my entire life ( im 29 now). The pediatric team is wonderful for your daughters care. The physicians are well known in their field. They have PT, RT, nutrition just for peds that are at clinic. As for the adult side, the team is WONDERFUL! They are very comfortable with dealing with CFRD, they work hand in hand with the outpatient diabetes NPs who have taken charge of my CFRD and have it tighly controlled even though I eat like crazy. The nursing team is awesome. I always got a call back within a few hours for non emergent things and there is a way to get ahold of them immediately if needed. All CF patients go to a specific floor with private rooms. The floor deals with alot of CF patients and they are very aware of gowning up, washing hands, etc. PT is constantly on the floor getting you up and exercising or giving you CPT. The nutrition people on the floor make a point to get you food that you like, just not boring hospital food. In fact, the nurses will bring you homecooked cookies and brownies, pizza, whatever you want basically.
I guess you can tell, I am passionate about Hopkins. I no longer see the CF team because I am followed by transplant, but I see the team every now and then. In fact I saw my dietitian today and she ran up and gave me a huge hug and begged me to come visit. You are def. a person there not just a patient!
 
F

falbie13

New member
I have been going to Hopkins my entire life ( im 29 now). The pediatric team is wonderful for your daughters care. The physicians are well known in their field. They have PT, RT, nutrition just for peds that are at clinic. As for the adult side, the team is WONDERFUL! They are very comfortable with dealing with CFRD, they work hand in hand with the outpatient diabetes NPs who have taken charge of my CFRD and have it tighly controlled even though I eat like crazy. The nursing team is awesome. I always got a call back within a few hours for non emergent things and there is a way to get ahold of them immediately if needed. All CF patients go to a specific floor with private rooms. The floor deals with alot of CF patients and they are very aware of gowning up, washing hands, etc. PT is constantly on the floor getting you up and exercising or giving you CPT. The nutrition people on the floor make a point to get you food that you like, just not boring hospital food. In fact, the nurses will bring you homecooked cookies and brownies, pizza, whatever you want basically.
<br />I guess you can tell, I am passionate about Hopkins. I no longer see the CF team because I am followed by transplant, but I see the team every now and then. In fact I saw my dietitian today and she ran up and gave me a huge hug and begged me to come visit. You are def. a person there not just a patient!
 
S

Solo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>moxie1</b></i>

I go to Hershey Medical center and I love my cf doctor.</end quote></div>

Me too. I drive at least 1 1/2 hours, but the drive is well worth it. When I was a child, I went to CHOP in Philly, needless to say they didn't exactly set the bar too high.<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
S

Solo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>moxie1</b></i>

I go to Hershey Medical center and I love my cf doctor.</end quote>

Me too. I drive at least 1 1/2 hours, but the drive is well worth it. When I was a child, I went to CHOP in Philly, needless to say they didn't exactly set the bar too high.<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
S

Solo

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>moxie1</b></i>
<br />
<br />I go to Hershey Medical center and I love my cf doctor.</end quote>
<br />
<br />Me too. I drive at least 1 1/2 hours, but the drive is well worth it. When I was a child, I went to CHOP in Philly, needless to say they didn't exactly set the bar too high.<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
S

Shelbyville

New member
Hello:

I'm new 2008 (?) and old 54 so a late bloomer with the genes 508/117 however much is going on and go to Penn who seem do do a wonderful job with my care. The question I have is what are the differences that I can not see? One thing that did concern me was that I brought my own sputum sample beings it's been brown with some green mixed at times. They found Citrobachter and now on 3 weeks of Bactrum. So kinda had a concern that I'm not on the big list but that's OK however cultures should be done?

Luck and heath to all!! Steve
 
S

Shelbyville

New member
Hello:

I'm new 2008 (?) and old 54 so a late bloomer with the genes 508/117 however much is going on and go to Penn who seem do do a wonderful job with my care. The question I have is what are the differences that I can not see? One thing that did concern me was that I brought my own sputum sample beings it's been brown with some green mixed at times. They found Citrobachter and now on 3 weeks of Bactrum. So kinda had a concern that I'm not on the big list but that's OK however cultures should be done?

Luck and heath to all!! Steve
 
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