New Hospital = dissapointment

[Printer]

At my age it is much easier to get results to problems but if you remain respectful, you should get results. I would ask for the ADMINISTRATIVE NURSE (title may vary) and tell her exactly what you whav written here. I would also email the Doctor at the CF Center, sending the same information. Explain that you are not upset because your ice cream melted but that your meds and treatments are not being handled in a PROFESSIONAL manner.
<br />
<br />You (via your insurance) are paying alot of money to be in their hospital and you should expect PROFESSIONALISM on their part.
<br />
<br />Good luck,
<br />Bill

 

[imported_Momto2]

Wow. You are patient. (no pun intended!) I think I would have unhooked and trotted off to another hospital after the second incident. I KNOW my husband would have raised holy h*ll and throttled someone by then too....
In reality, complain, make it known on many levels and venues, maybe give them a second shot if they have reasonable explanations. After that, see ya.........

 

[imported_Momto2]

Wow. You are patient. (no pun intended!) I think I would have unhooked and trotted off to another hospital after the second incident. I KNOW my husband would have raised holy h*ll and throttled someone by then too....
In reality, complain, make it known on many levels and venues, maybe give them a second shot if they have reasonable explanations. After that, see ya.........

 

[imported_Momto2]

Wow. You are patient. (no pun intended!) I think I would have unhooked and trotted off to another hospital after the second incident. I KNOW my husband would have raised holy h*ll and throttled someone by then too....
<br />In reality, complain, make it known on many levels and venues, maybe give them a second shot if they have reasonable explanations. After that, see ya.........

 

[JessG]

Hello!<div><br></div><div>Sorry to hear about your bad experience.  </div><div><br></div><div>I had a similar experience a few years ago when moving from Childrens Hospital to Brigham and Womens.  Overall the nursing staff had never dealt with CF patients before because we had all been inpatient next door at Childrens.  Pharm was confused by our meds, chest PT wasn't up to par etc etc.  It took a lot of hard work on the part of CF docs with educating the staff but eventually the nurses started becoming more and more familiar.  In addition the patients were extremely vocal (in a polite yet firm manner) about what they felt was lacking.  It can always help to complete those surveys the hospitals send you in the mail after an admission.  Another helpful option is to write letters addressed to management in the hospital addressing your concerns.  Now at the top of our chart is a laminated piece of paper labeled CF FAST PASS, detailing the precautions people need to use.  They also tape a schedule with the day and the hours on the front of our door so respiratory therapy, physical therapy, nutrition etc can sign up and come at a pre-arranged time so you dont get flooded with everyone trying to treat you all at once.</div><div><br></div><div>Hope this helps!  </div><div><br></div><div>~Jess 29 CF; on transplant list </div>

 

[JessG]

Hello!<br>Sorry to hear about your bad experience. <br>I had a similar experience a few years ago when moving from Childrens Hospital to Brigham and Womens. Overall the nursing staff had never dealt with CF patients before because we had all been inpatient next door at Childrens. Pharm was confused by our meds, chest PT wasn't up to par etc etc. It took a lot of hard work on the part of CF docs with educating the staff but eventually the nurses started becoming more and more familiar. In addition the patients were extremely vocal (in a polite yet firm manner) about what they felt was lacking. It can always help to complete those surveys the hospitals send you in the mail after an admission. Another helpful option is to write letters addressed to management in the hospital addressing your concerns. Now at the top of our chart is a laminated piece of paper labeled CF FAST PASS, detailing the precautions people need to use. They also tape a schedule with the day and the hours on the front of our door so respiratory therapy, physical therapy, nutrition etc can sign up and come at a pre-arranged time so you dont get flooded with everyone trying to treat you all at once.<br>Hope this helps! <br>~Jess 29 CF; on transplant list

 

[JessG]

Hello!<br>Sorry to hear about your bad experience. <br>I had a similar experience a few years ago when moving from Childrens Hospital to Brigham and Womens. Overall the nursing staff had never dealt with CF patients before because we had all been inpatient next door at Childrens. Pharm was confused by our meds, chest PT wasn't up to par etc etc. It took a lot of hard work on the part of CF docs with educating the staff but eventually the nurses started becoming more and more familiar. In addition the patients were extremely vocal (in a polite yet firm manner) about what they felt was lacking. It can always help to complete those surveys the hospitals send you in the mail after an admission. Another helpful option is to write letters addressed to management in the hospital addressing your concerns. Now at the top of our chart is a laminated piece of paper labeled CF FAST PASS, detailing the precautions people need to use. They also tape a schedule with the day and the hours on the front of our door so respiratory therapy, physical therapy, nutrition etc can sign up and come at a pre-arranged time so you dont get flooded with everyone trying to treat you all at once.<br>Hope this helps! <br>~Jess 29 CF; on transplant list

 

[dledwith]

Hey i live in Maryland too. I'm 19 so i'm still going thru the transition from pediatric to adult care, but I can tell you the CF Center at children's hospital in washington dc is just fantastic. great doctors, great care, great nurses. truly incredible team over here. I know you're probably thinking it's a children's hospital and they don't take care of adults but they do have an adult team for patients with cf. i'd give it a shot if i were you. the number for appointments is 202-476-2128. The director of the adult program is Dr. Peter Levit.

dan

 

[dledwith]

Hey i live in Maryland too. I'm 19 so i'm still going thru the transition from pediatric to adult care, but I can tell you the CF Center at children's hospital in washington dc is just fantastic. great doctors, great care, great nurses. truly incredible team over here. I know you're probably thinking it's a children's hospital and they don't take care of adults but they do have an adult team for patients with cf. i'd give it a shot if i were you. the number for appointments is 202-476-2128. The director of the adult program is Dr. Peter Levit.

dan

 

[dledwith]

Hey i live in Maryland too. I'm 19 so i'm still going thru the transition from pediatric to adult care, but I can tell you the CF Center at children's hospital in washington dc is just fantastic. great doctors, great care, great nurses. truly incredible team over here. I know you're probably thinking it's a children's hospital and they don't take care of adults but they do have an adult team for patients with cf. i'd give it a shot if i were you. the number for appointments is 202-476-2128. The director of the adult program is Dr. Peter Levit.
<br />
<br />dan

 

[nmkarn]

I am so sorry to hear that. I am from Georgia and when I transferred from the pediatric hospital to Emory I had a similar situation. I was informed that they did not have enough time or people to do CPT. Also when RT did come around it was just to deliver meds. and leave. I have had one RT that stayed in to room for a record 10 mins one time and actually came back to check on me. I hope things get better for you.

Nicole

 

[nmkarn]

I am so sorry to hear that. I am from Georgia and when I transferred from the pediatric hospital to Emory I had a similar situation. I was informed that they did not have enough time or people to do CPT. Also when RT did come around it was just to deliver meds. and leave. I have had one RT that stayed in to room for a record 10 mins one time and actually came back to check on me. I hope things get better for you.

Nicole

 

[nmkarn]

I am so sorry to hear that. I am from Georgia and when I transferred from the pediatric hospital to Emory I had a similar situation. I was informed that they did not have enough time or people to do CPT. Also when RT did come around it was just to deliver meds. and leave. I have had one RT that stayed in to room for a record 10 mins one time and actually came back to check on me. I hope things get better for you.
<br />
<br />Nicole

 

[Hardak]

Sounds like you hit a streak of negligence, I would poke around the hospitals web-sight there should be means of voicing such problems to the management staff. I would also bring this up with your CF clinic. Also when admitted to a hospital the squeaky wheal thing is some what valid.
An unattended allergic reaction is dangers. 5 days for an script is as well... Might want to consider dragging a friend long on your first day in, once your completely setup its a bit easier to just go with the flow but sounds like they really didn't get you setup in the first place.

Keith 30 /w CF

 

[Hardak]

Sounds like you hit a streak of negligence, I would poke around the hospitals web-sight there should be means of voicing such problems to the management staff. I would also bring this up with your CF clinic. Also when admitted to a hospital the squeaky wheal thing is some what valid.
An unattended allergic reaction is dangers. 5 days for an script is as well... Might want to consider dragging a friend long on your first day in, once your completely setup its a bit easier to just go with the flow but sounds like they really didn't get you setup in the first place.

Keith 30 /w CF

 

[Hardak]

Sounds like you hit a streak of negligence, I would poke around the hospitals web-sight there should be means of voicing such problems to the management staff. I would also bring this up with your CF clinic. Also when admitted to a hospital the squeaky wheal thing is some what valid.
<br />An unattended allergic reaction is dangers. 5 days for an script is as well... Might want to consider dragging a friend long on your first day in, once your completely setup its a bit easier to just go with the flow but sounds like they really didn't get you setup in the first place.
<br />
<br />Keith 30 /w CF

 

[nmw0615]

I just started to make the transition from the children's hospital to the adult one and am having to get used to a new way of doing things as well.

I've always been fine with RTs just dropping my things off and letting me do them when I can. I tend to sleep in late and it's nicer to wake up and find my stuff ready to go, than to be woken up and having to do it then. Shortly after I turned 16 (I'm 21 now), my RTs knew they could trust me to do my VEST and inhalers without supervision.

When it comes to things like the allergic reaction and waiting for a script, I have found constant reminders to work extremely well. If I don't get a response in a decent amount of time, I bring it up again and again if I have to. Sometimes, you just have ot keep repeating yourself in order for things to be done.

I've had the same thing said to me about getting a port, and I've always told them when *I* and ready for that, I will get one. Most nurses and docs listen, as long as I'm willing to listen to their reasoning for me getting one. It's pretty give and take on that point.

Good luck and I hope your stays improve.

 

[nmw0615]

I just started to make the transition from the children's hospital to the adult one and am having to get used to a new way of doing things as well.

I've always been fine with RTs just dropping my things off and letting me do them when I can. I tend to sleep in late and it's nicer to wake up and find my stuff ready to go, than to be woken up and having to do it then. Shortly after I turned 16 (I'm 21 now), my RTs knew they could trust me to do my VEST and inhalers without supervision.

When it comes to things like the allergic reaction and waiting for a script, I have found constant reminders to work extremely well. If I don't get a response in a decent amount of time, I bring it up again and again if I have to. Sometimes, you just have ot keep repeating yourself in order for things to be done.

I've had the same thing said to me about getting a port, and I've always told them when *I* and ready for that, I will get one. Most nurses and docs listen, as long as I'm willing to listen to their reasoning for me getting one. It's pretty give and take on that point.

Good luck and I hope your stays improve.

 

[nmw0615]

I just started to make the transition from the children's hospital to the adult one and am having to get used to a new way of doing things as well.
<br />
<br />I've always been fine with RTs just dropping my things off and letting me do them when I can. I tend to sleep in late and it's nicer to wake up and find my stuff ready to go, than to be woken up and having to do it then. Shortly after I turned 16 (I'm 21 now), my RTs knew they could trust me to do my VEST and inhalers without supervision.
<br />
<br />When it comes to things like the allergic reaction and waiting for a script, I have found constant reminders to work extremely well. If I don't get a response in a decent amount of time, I bring it up again and again if I have to. Sometimes, you just have ot keep repeating yourself in order for things to be done.
<br />
<br />I've had the same thing said to me about getting a port, and I've always told them when *I* and ready for that, I will get one. Most nurses and docs listen, as long as I'm willing to listen to their reasoning for me getting one. It's pretty give and take on that point.
<br />
<br />Good luck and I hope your stays improve.

 

[Havoc]

Going through much of the of the same BS at Shadyside in Pittsburgh at the moment (that's where they admit adult CFers). Some of it is due to a nursing crunch and them having to pull a lot of float nurses not used to the CF service and part of it is sheer laziness.<br><br>I had to speak with a floor supervisor to get what I needed, when I needed it.  It's sad that in our healthcare you have to know enough about the standards of care as the docs and nurses do.   <br><br>Not that just being sick is bad enough, now I have to do everybody else's job.<br>