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Thread: New Hospital = dissapointment

  1. #1

    New Hospital = dissapointment

    I recently moved to Maryland and started going to Clinic at Johns Hopkins. I only had one appointment before I ended up needing to go into the hospital.&nbsp;<div><br></div><div>I really liked the people I met at my first appointment, and it seemed like they knew what they were doing. Going into the hospital has been ... well,&nbsp;disappointing&nbsp;-- to say the least.&nbsp;</div><div><br></div><div>I'm not sure if it's just because I'm used to a different system, or if it's&nbsp;truly&nbsp;as bad as it seems, but after 5 days I cannot WAIT to leave (and I am NOT one to rush out the hospital). Mainly it's simple things like having to ask for a Contact PreCaution sign on my door due to having 2 different MRSA strands. And then once I got one put up, having to remind nurses, doctors, people who draw blood, etc. to go back out and put on gowns and gloves!&nbsp;</div><div><br></div><div>Or that it took 5 days to get an albuterol inhaler -- after&nbsp;repeatedly&nbsp;telling each Dr. that I still didn't have one. I kept getting the same response "Oh we'll have to fix that. We'll put that order right in" ...5 days later. grrrr</div><div><br></div><div>I also see a lot of "Whatever makes my life easier is what we're going to do" going on here. Example: RT comes once a night for chest PT. PT's perform PT during the day up to 3 times. Well my RT came to see me, looked up my chart info in the computer and told me "Oh, well your order is only for PT twice a day... did Pt come tap on you already twice?"&nbsp;</div><div><br></div><div>"Yes... but I'm not sure where you're going with this." Clearly she wanted to leave. And I called her out on it, she &nbsp;told me that she can stay if I think I need it. &nbsp;I told her I did and she set her watch for 5 minutes. After that she was gone.&nbsp;</div><div><br></div><div>Or the IV nurse giving my my 3rd IV kept asking 'why I just didn't have a port yet' because 'she lovesss them, so much easier to access''. and when I told her I wasn't sure I was ready for a port she asked how often I was in this year (3 visits so far... in 3 months =\) and she said something along the lines of 'you should&nbsp;just&nbsp;get one'. (It's a very personal decision and it's one I don't want to make for a while! ugh. ) I said something along those lines but she wouldn't drop it.&nbsp;</div><div><br></div><div>There's also a lot of poor communication. I was having an allergic reaction to an IV med my nurse had given me so I rang out to the nurses station to let them know I needed benadryl for my allergic reaction. 15 minutes later PT came to take me for a walk and I told her I was waiting on my benadryl. She went to find my nurse... turns out she didn't even get the message that I wasn't handling the Vancomycin well and needed Benadryl. I never got any benadryl and was itchy/firey/and numb for the full 1.5 hours my med ran.&nbsp;</div><div><br></div><div>I've been trying so hard to give this place a second chance and continue to have an open mind, but they are making it so hard! I feel that the CF center is okay but as far as being in patient it's a horrible experience. Am I being overly critical? Is there something I'm doing wrong as far as being a patient?? Is this level of disfunction normal and should I just get used to it?&nbsp;</div><div><br></div><div>I figured going to the number one hospital I'd be in good hands, but I've been nothing but&nbsp;disappointed&nbsp;since I've arrived. I didn't have really high expectations, I'm only comparing them to the last&nbsp;hospital&nbsp;I stayed at. =\&nbsp;</div><div><br></div><div>Any advice? suggestions? comments? Reasons why you love Johns Hopkins? anything really?&nbsp;</div><div><br></div><div><br></div>

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  2. #2

    New Hospital = dissapointment

    I recently moved to Maryland and started going to Clinic at Johns Hopkins. I only had one appointment before I ended up needing to go into the hospital.<br>I really liked the people I met at my first appointment, and it seemed like they knew what they were doing. Going into the hospital has been ... well,disappointing-- to say the least.<br>I'm not sure if it's just because I'm used to a different system, or if it'strulyas bad as it seems, but after 5 days I cannot WAIT to leave (and I am NOT one to rush out the hospital). Mainly it's simple things like having to ask for a Contact PreCaution sign on my door due to having 2 different MRSA strands. And then once I got one put up, having to remind nurses, doctors, people who draw blood, etc. to go back out and put on gowns and gloves!<br>Or that it took 5 days to get an albuterol inhaler -- afterrepeatedlytelling each Dr. that I still didn't have one. I kept getting the same response "Oh we'll have to fix that. We'll put that order right in" ...5 days later. grrrr<br>I also see a lot of "Whatever makes my life easier is what we're going to do" going on here. Example: RT comes once a night for chest PT. PT's perform PT during the day up to 3 times. Well my RT came to see me, looked up my chart info in the computer and told me "Oh, well your order is only for PT twice a day... did Pt come tap on you already twice?"<br>"Yes... but I'm not sure where you're going with this." Clearly she wanted to leave. And I called her out on it, she told me that she can stay if I think I need it. I told her I did and she set her watch for 5 minutes. After that she was gone.<br>Or the IV nurse giving my my 3rd IV kept asking 'why I just didn't have a port yet' because 'she lovesss them, so much easier to access''. and when I told her I wasn't sure I was ready for a port she asked how often I was in this year (3 visits so far... in 3 months =\) and she said something along the lines of 'you shouldjustget one'. (It's a very personal decision and it's one I don't want to make for a while! ugh. ) I said something along those lines but she wouldn't drop it.<br>There's also a lot of poor communication. I was having an allergic reaction to an IV med my nurse had given me so I rang out to the nurses station to let them know I needed benadryl for my allergic reaction. 15 minutes later PT came to take me for a walk and I told her I was waiting on my benadryl. She went to find my nurse... turns out she didn't even get the message that I wasn't handling the Vancomycin well and needed Benadryl. I never got any benadryl and was itchy/firey/and numb for the full 1.5 hours my med ran.<br>I've been trying so hard to give this place a second chance and continue to have an open mind, but they are making it so hard! I feel that the CF center is okay but as far as being in patient it's a horrible experience. Am I being overly critical? Is there something I'm doing wrong as far as being a patient?? Is this level of disfunction normal and should I just get used to it?<br>I figured going to the number one hospital I'd be in good hands, but I've been nothing butdisappointedsince I've arrived. I didn't have really high expectations, I'm only comparing them to the lasthospitalI stayed at. =\<br>Any advice? suggestions? comments? Reasons why you love Johns Hopkins? anything really?<br><br>

    0 Not allowed!

  3. #3

    New Hospital = dissapointment

    I recently moved to Maryland and started going to Clinic at Johns Hopkins. I only had one appointment before I ended up needing to go into the hospital.<br>I really liked the people I met at my first appointment, and it seemed like they knew what they were doing. Going into the hospital has been ... well,disappointing-- to say the least.<br>I'm not sure if it's just because I'm used to a different system, or if it'strulyas bad as it seems, but after 5 days I cannot WAIT to leave (and I am NOT one to rush out the hospital). Mainly it's simple things like having to ask for a Contact PreCaution sign on my door due to having 2 different MRSA strands. And then once I got one put up, having to remind nurses, doctors, people who draw blood, etc. to go back out and put on gowns and gloves!<br>Or that it took 5 days to get an albuterol inhaler -- afterrepeatedlytelling each Dr. that I still didn't have one. I kept getting the same response "Oh we'll have to fix that. We'll put that order right in" ...5 days later. grrrr<br>I also see a lot of "Whatever makes my life easier is what we're going to do" going on here. Example: RT comes once a night for chest PT. PT's perform PT during the day up to 3 times. Well my RT came to see me, looked up my chart info in the computer and told me "Oh, well your order is only for PT twice a day... did Pt come tap on you already twice?"<br>"Yes... but I'm not sure where you're going with this." Clearly she wanted to leave. And I called her out on it, she told me that she can stay if I think I need it. I told her I did and she set her watch for 5 minutes. After that she was gone.<br>Or the IV nurse giving my my 3rd IV kept asking 'why I just didn't have a port yet' because 'she lovesss them, so much easier to access''. and when I told her I wasn't sure I was ready for a port she asked how often I was in this year (3 visits so far... in 3 months =\) and she said something along the lines of 'you shouldjustget one'. (It's a very personal decision and it's one I don't want to make for a while! ugh. ) I said something along those lines but she wouldn't drop it.<br>There's also a lot of poor communication. I was having an allergic reaction to an IV med my nurse had given me so I rang out to the nurses station to let them know I needed benadryl for my allergic reaction. 15 minutes later PT came to take me for a walk and I told her I was waiting on my benadryl. She went to find my nurse... turns out she didn't even get the message that I wasn't handling the Vancomycin well and needed Benadryl. I never got any benadryl and was itchy/firey/and numb for the full 1.5 hours my med ran.<br>I've been trying so hard to give this place a second chance and continue to have an open mind, but they are making it so hard! I feel that the CF center is okay but as far as being in patient it's a horrible experience. Am I being overly critical? Is there something I'm doing wrong as far as being a patient?? Is this level of disfunction normal and should I just get used to it?<br>I figured going to the number one hospital I'd be in good hands, but I've been nothing butdisappointedsince I've arrived. I didn't have really high expectations, I'm only comparing them to the lasthospitalI stayed at. =\<br>Any advice? suggestions? comments? Reasons why you love Johns Hopkins? anything really?<br><br>

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  4. #4

    New Hospital = dissapointment

    That level of care doesn't sound great... you shouldn't have to wait 5 days for a new scrip, that should be a same day thing. And waiting on benadryl for an allergic reaction, if it is serious, seems dangerously negligent.

    I would also suggest you be a lot more forthright and demanding in the hospital, anyway. Consider that everyone that is working with you is also working with X number of other patients - they are busy. You need to be a squeaky wheel. When I go into the hospital, I turn into an unreasonably demanding person, because that seems to be the best way to get results.

    If you aren't getting care that you think you need, ask literally everyone about it - doctors, nurses, people walking through the hall, everyone. And keep asking, until it is taken care of. If someone gives you attitude, like the RT person, ask who their manager is and complain. If you don't get benadryl, walk over to the nurses' station and demand they give you benadryl right then. Buzz the nurse every 30 minutes until you get albuterol. Etc...

    0 Not allowed!

  5. #5

    New Hospital = dissapointment

    That level of care doesn't sound great... you shouldn't have to wait 5 days for a new scrip, that should be a same day thing. And waiting on benadryl for an allergic reaction, if it is serious, seems dangerously negligent.

    I would also suggest you be a lot more forthright and demanding in the hospital, anyway. Consider that everyone that is working with you is also working with X number of other patients - they are busy. You need to be a squeaky wheel. When I go into the hospital, I turn into an unreasonably demanding person, because that seems to be the best way to get results.

    If you aren't getting care that you think you need, ask literally everyone about it - doctors, nurses, people walking through the hall, everyone. And keep asking, until it is taken care of. If someone gives you attitude, like the RT person, ask who their manager is and complain. If you don't get benadryl, walk over to the nurses' station and demand they give you benadryl right then. Buzz the nurse every 30 minutes until you get albuterol. Etc...

    0 Not allowed!

  6. #6

    New Hospital = dissapointment

    That level of care doesn't sound great... you shouldn't have to wait 5 days for a new scrip, that should be a same day thing. And waiting on benadryl for an allergic reaction, if it is serious, seems dangerously negligent.
    <br />
    <br />I would also suggest you be a lot more forthright and demanding in the hospital, anyway. Consider that everyone that is working with you is also working with X number of other patients - they are busy. You need to be a squeaky wheel. When I go into the hospital, I turn into an unreasonably demanding person, because that seems to be the best way to get results.
    <br />
    <br />If you aren't getting care that you think you need, ask literally everyone about it - doctors, nurses, people walking through the hall, everyone. And keep asking, until it is taken care of. If someone gives you attitude, like the RT person, ask who their manager is and complain. If you don't get benadryl, walk over to the nurses' station and demand they give you benadryl right then. Buzz the nurse every 30 minutes until you get albuterol. Etc...

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  7. #7

    New Hospital = dissapointment

    That's strange because I thought Johns Hopkins was one of the best CF centers in the country. I have only heard good things about them. But part of your disappointment I think is due the fact that it's different that what you've experienced before at your old clinic.

    That is what happened to me. I had a great clinic where I grew up. They have such a great way of treating their patients and really put the ball in your court as to how you want to handle your CF. So when I moved 5 years ago, I was very disappointed and confused at the different ways the clinic is run. The inpatient set-up is much different, the outpatient clinic is much different, and the doctors are very different. So that is part of where my disappointment came from - just wasn't what I was used to.

    Well, good luck with your inpatient stay and keep on them!

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  8. #8

    New Hospital = dissapointment

    That's strange because I thought Johns Hopkins was one of the best CF centers in the country. I have only heard good things about them. But part of your disappointment I think is due the fact that it's different that what you've experienced before at your old clinic.

    That is what happened to me. I had a great clinic where I grew up. They have such a great way of treating their patients and really put the ball in your court as to how you want to handle your CF. So when I moved 5 years ago, I was very disappointed and confused at the different ways the clinic is run. The inpatient set-up is much different, the outpatient clinic is much different, and the doctors are very different. So that is part of where my disappointment came from - just wasn't what I was used to.

    Well, good luck with your inpatient stay and keep on them!

    0 Not allowed!

  9. #9

    New Hospital = dissapointment

    That's strange because I thought Johns Hopkins was one of the best CF centers in the country. I have only heard good things about them. But part of your disappointment I think is due the fact that it's different that what you've experienced before at your old clinic.
    <br />
    <br />That is what happened to me. I had a great clinic where I grew up. They have such a great way of treating their patients and really put the ball in your court as to how you want to handle your CF. So when I moved 5 years ago, I was very disappointed and confused at the different ways the clinic is run. The inpatient set-up is much different, the outpatient clinic is much different, and the doctors are very different. So that is part of where my disappointment came from - just wasn't what I was used to.
    <br />
    <br />Well, good luck with your inpatient stay and keep on them!

    0 Not allowed!

  10. #10

    New Hospital = dissapointment

    I would NOT tolerate that kind of care what so ever. You or an advocate for you needs to get your CF doc involved into fixing this. And the nursing staff should have a head nurse that manages all the nurses. DEMAND to have that nurse come into your room and discuss ALL that his going on. If the hospital is any good at all that nurse will know what to do and FIX all this. I have had to do this before when a nurse gave me a wrong med and then that head nurse actually took care of me from then on..... DO NOT ACCEPT this!!!&nbsp; Good luck and sorry you have to go through this while not feeling well is even harder!<br>

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