• Profile photo of sunphilsunphil
    Member
    #171205157222

    I have two words for you—DITCH them.  I went to Hopkins when I first moved to MD, then realized that it was bad, you are not alone on that idea.  When you are seen in clinic, it is by CF specialists.  When you are admitted, you are on the “medical” floor (unless that has changed since 1998).  I had a nurse that had no clue about treating CF.  She would come in my room and hand me my meds, including my enzymes.  She wanted to see me swallow them before she would leave.  I told her that my breakfast had not arrived.  She did not understand what the problem was, “just go ahead and take them, your breakfast will be here soon”.  I refused to take them, and tried to explain the purpose of the enzymes (believe it or not, I was trying to be tactful).  She got all huffy and walked out, but did not return when I told them I was ready for my enzymes.  You are expected to stay in your room pretty much at all times.  Since I have been at Children’s National Med Ctr in DC, it has been MUCH better.  It is basically the same distance from my house (as Hopkins), since I live west of Frederick MD.  The doctors are great, and are the same ones that care for you when you are admitted.  The floor that you are admitted to are well aware of CF issues and treatments.  As an inpatient, you are given a bottle of enzymes to keep in your drawer.  You use them as you need them.  They have an exersize room that you are encouraged to use to keep up activity level (if in isolation, they will bring you your own bike).  They have computers to use, and you are allowed to go down to get food at the cafeteria.  You can wander around at the gift shop and get a good cup of coffee from the cafeteria or kiosk.  You can still get cabin fever, but it is a huge improvement over Hopkins!!! 

    Profile photo of sunphilsunphil
    Member
    #171205290051

    I have two words for you—DITCH them. I went to Hopkins when I first moved to MD, then realized that it was bad, you are not alone on that idea. When you are seen in clinic, it is by CF specialists. When you are admitted, you are on the “medical” floor (unless that has changed since 1998). I had a nurse that had no clue about treating CF. She would come in my room and hand me my meds, including my enzymes. She wanted to see me swallow them before she would leave. I told her that my breakfast had not arrived. She did not understand what the problem was, “just go ahead and take them, your breakfast will be here soon”. I refused to take them, and tried to explain the purpose of the enzymes (believe it or not, I was trying to be tactful). She got all huffy and walked out, but did not return when I told them I was ready for my enzymes. You areexpected tostay in your roompretty much at all times. Since I have been at Children’s National Med Ctr in DC, it has been MUCH better. It is basicallythe same distance from my house (as Hopkins),sinceI live west of Frederick MD. The doctors are great, and are the same ones that care for you when you are admitted. The floor that you are admitted to are well aware of CF issues and treatments. As an inpatient, you are given a bottle of enzymes to keep in your drawer. You use them as you need them. They have an exersize room that you are encouraged to use to keep up activity level (if in isolation, they will bring you your own bike). They have computers to use, and you are allowed to go down to get food at the cafeteria. You can wander around at the gift shop and get a good cup of coffee from the cafeteria or kiosk. You can still get cabin fever, but it is a huge improvement over Hopkins!!!

    Profile photo of sunphilsunphil
    Member
    #171205421327

    I have two words for you—DITCH them. I went to Hopkins when I first moved to MD, then realized that it was bad, you are not alone on that idea. When you are seen in clinic, it is by CF specialists. When you are admitted, you are on the “medical” floor (unless that has changed since 1998). I had a nurse that had no clue about treating CF. She would come in my room and hand me my meds, including my enzymes. She wanted to see me swallow them before she would leave. I told her that my breakfast had not arrived. She did not understand what the problem was, “just go ahead and take them, your breakfast will be here soon”. I refused to take them, and tried to explain the purpose of the enzymes (believe it or not, I was trying to be tactful). She got all huffy and walked out, but did not return when I told them I was ready for my enzymes. You areexpected tostay in your roompretty much at all times. Since I have been at Children’s National Med Ctr in DC, it has been MUCH better. It is basicallythe same distance from my house (as Hopkins),sinceI live west of Frederick MD. The doctors are great, and are the same ones that care for you when you are admitted. The floor that you are admitted to are well aware of CF issues and treatments. As an inpatient, you are given a bottle of enzymes to keep in your drawer. You use them as you need them. They have an exersize room that you are encouraged to use to keep up activity level (if in isolation, they will bring you your own bike). They have computers to use, and you are allowed to go down to get food at the cafeteria. You can wander around at the gift shop and get a good cup of coffee from the cafeteria or kiosk. You can still get cabin fever, but it is a huge improvement over Hopkins!!!

    Profile photo of CrunchCrunch
    Member
    #171205155621

    My advice is to let management know of this problem. if this happens to you, then then it’s happening to someone else. Is there a number to call if you aren’t being treated right? Does your main doctor know what happened?

    Profile photo of CrunchCrunch
    Member
    #171205288648

    My advice is to let management know of this problem. if this happens to you, then then it’s happening to someone else. Is there a number to call if you aren’t being treated right? Does your main doctor know what happened?

    Profile photo of CrunchCrunch
    Member
    #171205419920

    My advice is to let management know of this problem. if this happens to you, then then it’s happening to someone else. Is there a number to call if you aren’t being treated right? Does your main doctor know what happened?

    Profile photo of 006schol006schol
    Member
    #171205155584

    Profile photo of 006schol006schol
    Member
    #171205288618

    Profile photo of 006schol006schol
    Member
    #171205419890

    Profile photo of hockeygrl617hockeygrl617
    Member
    #171205155477

    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.

    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.  

    Not that just being sick is bad enough, now I have to do everybody else’s job.

    Profile photo of hockeygrl617hockeygrl617
    Member
    #171205288521

    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.

    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.

    Not that just being sick is bad enough, now I have to do everybody else’s job.

    Profile photo of hockeygrl617hockeygrl617
    Member
    #171205419795

    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.

    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.

    Not that just being sick is bad enough, now I have to do everybody else’s job.

    #171205155472

    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.

    #171205288516

    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.

    #171205419790

    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.

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