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Author Topic: Navigating medical heck  (Read 3624 times)

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Offline wtfimpoz

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  • Posts: 418
  • Let's make biscuits!
Navigating medical heck
« on: August 10, 2010, 11:06:24 PM »
Had a killer sore throat for the last five days.  Ignored it, as I always do.  Last night, I noticed a tingling sensation in my middle finger.  Ignored it.  Woke up this morning, tingling had spread to both feet and both hands, in fingers and toes only.  I thought "I wonder if this is Peripheral Neuropathy".  I began to check around.  Called ID doc.  No answer.  Called ID clinic.  The machine told me to call back, then hung up (true story!).  Called different clinic associated with doc, got a machine which put me on endless hold and ultimately looped me into a different department.  Called The "nurse line" for my medical network, the one sponsored by the hospital I go to, not my insurance's nurse line.  She told me that my doc was on vacation, that I needed to go to the ER.  We chatted about whether or not my doc was an ID doc od primary care.  There is a bit of confusion about this.  I asked again if i should go to the ER.  I thought that was a little drastic.  I did however want answers as to what this tingling was, should I begin treatment immediately after all, etc.  I showed up at my ID clinic instead, explained the situation, asked if there was another doc who might be able to squeeze me in.  They said no, go to the ER.  I went to the ER.

The ER saw me.  I met with a nurse practictioner who was sufficiently vile that she by herself could compel one to defer treatment to the point of death.  She chastised me for going to the ER for HIV and explained that this was not an HIV practice.  I explained that I couldn't get in.  She chastised me for not starting to try until 4:30 pm.  I explained to her that I'd begun calling around at 12 pm.  Explained what I went through.  She told me that I needed to complain to someone about this, that I was wasting everyone's time in the ER.  I explained that I didn't go to the ER for fun, that this was basicaly a last resort and that I was here seeking medical help at what might be a critical time.  She pulled up my file, spent a good 5 minutes reading my charts and then, as though possed with malicious intent and a knowledge of my concerns in mind literally proclaimed (qupted phrases are made up of actual quotes that I recall)

Nurse Crazy:  "The drugs are really good.  The drugs will keep you alive long enough to die of something else.  The problem is, they don't penetrate the blood brain barrier.  You'll probably be in a nursing home in 30 years"

WTF:  THIRTY YEARS?!?!  I'm only 28?!?!

Nurse Crazy:  "Surely I'm no the first person to mention this to you"?

WTF:  Ummm, I dind't know that it was a given that I'd be developing dementia.  I thought...

Nurse Crazy:  "Ok, then 40 years.  Whatever.  I'm just trying to reassure you.  You've seen Magic Johnson, right?  People with diseases like this always think every symptom is a problem.  My brother has cancer, and he thinks a tingle in his nose means his cancer is acting up."

WTF:  Ummmm, do you know something about the trajectory of my illness that I don't know?

Nurse Crazy:  I don't know anything about HIV.  I told you, I'm not an HIV practioner.  I could get an HIV doc in consultation if you like, but they don't like it.  We rarely do it though.

they take my blood sugar to see if I'm having some diabetic thing. Swab my throat because, why not, I'm in there, we might as well see if we can figure out whats going on in there too. The nurse who takes my blood sits next to me, and I whisper "Is nurse crazy always like that?".  The nurse says "like what?"

***10 minutes later nurse crazy bursts into my room again***

Nurse Crazy:  Is something I've done not to your liking?

WTF:  Yes, uhhh, frankly, I found you a little dismissive.

Nurse Crazy:  I told you my brother has cancer!  I told you I'd even interrupt a doctor's dinner for a consultation!  And you...

WTF:  Don't you dare chastise me!  I'm the one in a vulnerable position here.  I'm the one coming to YOU for help.  I didn't come here because I wanted to use up valuable ER resources.  I came because I had no other option and I 'm seeking help!  What kind fo place is this?  What did hte other nurse tell you?  I just asked if you're always like this, and now you're yelling at me! 

Nurse Crazy:  Would you like me to get the doc's consultation?

WTF:  NO! Don't even bother.  I'd like to leave!  This is ridiculous!  I can't even believe I'm being subjected to this!  (sits up)

Nurse Crazy:  Stay there.  We need some time for your throat culture to come back anyways.

I sit, she comes back and tells me that the doc says not to take the drugs, to calm down.  She tells me she told the doc that I won't be able to calm down until I make myself calm down.  I'm rather appalled at the entire situation.  I ask if my tingling is something that can be dealt with.  Agian "I'm not an HIV practitioner".  I left the hospital...

*****

So obviously, its time to look at leaving my medical network in favor of greener pastures.  I've dropped veterinarians who exhibited more composed and professional behavior.  I'm a high strung person.  Unfortunately, the dicussion with Nurse Crazy proceeded pretty much exactly as I portray it, with the quotes being, well, pretty darn close to actual quotes.  I've never submitted a formal complaint about a medical practictioner before, but this woman basically takes the cake.  Short of prescribing medication which could make things worse, I can't imagine her being any worse.  Are there channells to do this that are more effective than complaining to the Hospital Customer Service Line?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline phildinftlaudy

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  • Posts: 2,975
  • sweet Ann what you think babe...
Re: Navigating medical heck
« Reply #1 on: August 10, 2010, 11:15:59 PM »
WTF -
Talk to the Patient Care Supervisor, then talk to the Chief Medical Officer of the ER, then tallk to CEO of hospital (when I say talk - with some it may require an email).  I had a similar type of situation a few months back whenn I took my ex to the hospital ER ---- I took it to every part of the chain of command.  Funny thing is, I am connected with the healthcare system where I took him, so it really blew me away.  But, I did get a response that the people who "dropped the ball" over and over would be talked to. 

It takes a lot of "stick with it." But follow through.

I never apologize for going to the ER and I would've asked for a supervisor the second she had gotten even slightly out of line or inappropriate with me.  One thing I don't tolerate is poor customer service - whether it be at a restaurant or more importantly an ER.

Make sure you follow up.  Might be a little early for PN to be developing, but you never know.  I have had severe pain in my feet and my doc said it looks to be beginnings of PN and has scheduled the appropriate tests.

September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline wtfimpoz

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  • Posts: 418
  • Let's make biscuits!
Re: Navigating medical heck
« Reply #2 on: August 10, 2010, 11:26:16 PM »
It seemed a little early...and fast moving...for PN for me as well.  The sensation started in one finger, and has moved into both hands and now both feet, into the ball of my feet.  Its most pronounced in my left foot.  This has happened in teh span of about a day, and honestly, my first thought is that its mental, but it certainly feels real and I wanted some sort of medical attention to see if there was anything that could be done.  Thanks for the suggestion.  My understanding is that if an MD is terrible and incompetent, the most effective thing to do isn't to complain or sue, but to go to the state medical board.    The most effective way to handle a lawyer is to comlain directly to the bar.  Any similar org for nurse practitcioners?
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline phildinftlaudy

  • Member
  • Posts: 2,975
  • sweet Ann what you think babe...
Re: Navigating medical heck
« Reply #3 on: August 10, 2010, 11:37:25 PM »
They get their license from the state also - here in Florida it is through Department of Health (I'm pretty sure) - you could also put a complaint in to them (or whichever state agency oversees them in your state).  I have no problem making a ruckus - I have high standards, as I said, when it comes to customer service.  I also give respect to those in positions and try my best to be a "good" patient with both nurses and docs, as well as other medical staff, so I expect them to treat me with respect. 

It may not be PN and like you said it might be more your mind expanding it, but still worth checking out.  Could be lack of circulation, etc.  I get horrible pains in my feet.  Needles, hot, radiates from the center and before you know it the whole foot (not just one either - they like to do it in sequence it seems) -- has made it hard to walk more then a few times - and nothing relieves it - not sitting, standing, elevating them, soaking them, massaging, nothing....

September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline wtfimpoz

  • Member
  • Posts: 418
  • Let's make biscuits!
Re: Navigating medical heck
« Reply #4 on: August 11, 2010, 12:25:31 AM »
Yeah, this isn't painful in the least. And although it started in my left fingers, that area is now free of the sensation, with most of it having migrated to my feet.  And thus far, it isn't worse in the mornings, which is supposedly another hallmark of PN.  And I feel nothing when I'm not actually on my feet.  It is most definitely a bizarre sensation though, and it feels likei should be doing SOMETHING about it, as it has just started and is generally getting worse.  Its hard to know where to begin though when medical help is outright dismissive.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline thankyoulilmijo

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  • Posts: 17
  • I've accepted the things I cannot change... :-)
Re: Navigating medical heck
« Reply #5 on: August 15, 2010, 07:55:23 PM »
Cause a scene because I sure as hell would... WTF!!!! Just remember a little tact goes a LONG way

Offline dvinemstre

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  • Posts: 96
  • hot in carolina
Re: Navigating medical heck
« Reply #6 on: August 16, 2010, 01:49:02 AM »
WTF, I find you continue to show your immature view of the world on this board...no, you should not have been dismissed, but I have to say 1) your story seems a bit BS to me...I mean are you really wanting everyone to believe that you more tenaciously called and griped than demanded a DR. I don't know where you live, but I live in a rural "city" in the South and even here, with great medical care  you can expect a 2 hour turnaround time for a call back from oncall Dr...if you were waiting for your ID Dr. he was probably doing final rounds at the hospital that day or seeing his patients. 2) As a counselor I would kindly and strongly advise you that spending time in counseling may be a better use of your time 3) I think people will say stupid and/or ignorant things about hiv/aids, even in the medical community. My non ID Dr was an idiot when she told me...she was so upset cause she is awesome and we have great rapport. I gently told her later she made some ignorant comments about hiv to me and that I think she should get educated if she is going to give her patients hiv+ diagnoses. All of this to say : get help to cope with what you mind is doing to you about your newfound status, and give yourself a break about it. My head was spinning for a long time. Z

Offline wtfimpoz

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  • Posts: 418
  • Let's make biscuits!
Re: Navigating medical heck
« Reply #7 on: August 19, 2010, 12:19:15 AM »
WTF, I find you continue to show your immature view of the world on this board...no, you should not have been dismissed, but I have to say 1) your story seems a bit BS to me...I mean are you really wanting everyone to believe that you more tenaciously called and griped than demanded a DR. I don't know where you live, but I live in a rural "city" in the South and even here, with great medical care  you can expect a 2 hour turnaround time for a call back from oncall Dr...if you were waiting for your ID Dr. he was probably doing final rounds at the hospital that day or seeing his patients. 2) As a counselor I would kindly and strongly advise you that spending time in counseling may be a better use of your time 3) I think people will say stupid and/or ignorant things about hiv/aids, even in the medical community. My non ID Dr was an idiot when she told me...she was so upset cause she is awesome and we have great rapport. I gently told her later she made some ignorant comments about hiv to me and that I think she should get educated if she is going to give her patients hiv+ diagnoses. All of this to say : get help to cope with what you mind is doing to you about your newfound status, and give yourself a break about it. My head was spinning for a long time. Z

1)  I'd been trying for close to five hours, exhausted every avenue and thought that I could be at a critical point where medical recommendation would be useful.  My action was also urged by the hospital's nurse line.  What tenacious griping are you referring to?  Your sentence is kind of confusing.  I haven't called and griped about anything yet.  The post was a question about which channel would be most effective.
2)  If my counselor ever suggests that its "immature" to seek out medical attention after following all proper medical channels, I will promptly fire him.
3)  This woman was f***ing ridiculous.  Maybe she suddenly develops a sense of compassion for issues which she deems "worthy emergencies", but I get the impression that those instances are few and far between.
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Joe K

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  • 31 Years Poz
Re: Navigating medical heck
« Reply #8 on: August 19, 2010, 12:46:21 AM »
Did it ever occur to you, that maybe she just lost her husband or child and was having a really bad day? I'm not making excuses, I was not there, however 30 years in ERs and I have never encountered a nurse as you describe her. If you believe she was being offensive, then follow the chain of command to get it resolved.

Offline wtfimpoz

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  • Let's make biscuits!
Re: Navigating medical heck
« Reply #9 on: August 19, 2010, 03:19:03 PM »
Did it ever occur to you, that maybe she just lost her husband or child and was having a really bad day? I'm not making excuses, I was not there, however 30 years in ERs and I have never encountered a nurse as you describe her. If you believe she was being offensive, then follow the chain of command to get it resolved.

did it ever occur to you that preceding a question with "did it ever occur to you" makes you sound like a condescending twat?  No, it didn't occur to me that I should overlook her repeatedly abhorrent and unhelpful behavior on the premise that her husband just died.  I expect the burger girl at mcdonalds to come to work ready to behave in a professional manner.  I see absolutely no reason why we can't expect similar composure from a highly trained and compensated medical practioner.  There is a reason places of employment offer leaves of absence.  It's great that you've never had a bad experience but clearly your personal experiences aren't universally applicable. 
09/01/2009-neg
mid april, 2010, "flu like illness".
06/01/2010-weakly reactive ELISA, indeterminant WB
06/06/2010-reactive ELISA, confirmed positive.

DATE       CD4     %     VL
07/15/10  423     33    88k
08/28/10  489     19    189k
09/06/10-Started ATRIPLA
09/15/10  420     38    1400
11/21/10  517     25    51

Offline Joe K

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  • Member
  • Posts: 3,877
  • 31 Years Poz
Re: Navigating medical heck
« Reply #10 on: August 19, 2010, 04:13:57 PM »
did it ever occur to you that preceding a question with "did it ever occur to you" makes you sound like a condescending twat?  No, it didn't occur to me that I should overlook her repeatedly abhorrent and unhelpful behavior on the premise that her husband just died.  I expect the burger girl at mcdonalds to come to work ready to behave in a professional manner.  I see absolutely no reason why we can't expect similar composure from a highly trained and compensated medical practioner.  There is a reason places of employment offer leaves of absence.  It's great that you've never had a bad experience but clearly your personal experiences aren't universally applicable. 

I'm responding just to lock in your words, so you can't edit them.

Offline Tim Horn

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  • Posts: 799
Re: Navigating medical heck
« Reply #11 on: August 19, 2010, 04:24:36 PM »
did it ever occur to you that preceding a question with "did it ever occur to you" makes you sound like a condescending twat? 

And a mere two days after rejoining the forums following your first time-out, you're now on a second one, this time for 30 days. Better luck this time.

Offline carousel

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  • Posts: 821
Re: Navigating medical heck
« Reply #12 on: August 19, 2010, 04:53:54 PM »
Joe,

I'm not quite clear why you had to enter this thread.

I can't help thinking that you chose to have a go at WTF.  Provoked, he did what he normally does, came back with some caustic comments. 

He's out of here for 30 days, but I just wondered what your motivation was?  I hope it was not to have a go at him.

 


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