Re: Odd Experience with Nurse

[Guest guest]

Ruth,

You are fortunate to have a doctor friend. Is this woman also someone who

treats you or is your primary dr the employer of the ignorant nurse? Sine

you have such a knowledgeable friend would she be willing to see you or

recommend someone who is also up on AIH?

We go through too much to have to deal with ignorance from medical

professionals. We go to them so they help us, not berate us!

Hope you can find some help for the itching!

Hang in there Patty

[ ] Odd Experience with Nurse

Hi Everyone,

I just needed to see what you think of an odd experience I had

with a nurse today. I called into my HMO to speak to an advice nurse

in the G.I. department. My new G.I. doctor is on vacation. I told

them that I was having severe itching that was keeping me awake at

night. The nurse asked me what my medications were, I went through

the long list. She jumped right in, and the first thing she said

was, why are you taking predisone? I told her I had AIH, and she

said that I shouldn't be taking predisone. I told her it was the

gold standard for treatment to AIH. She basically questioned why I

was taking a lot of the other meds. I told her what predisone was

used for and that I was on a tapering dose. She reported back to the

doctor on call. I told her I felt the itching was definitely related

to my liver. The doctor she spoke with relayed back to me, he didn't

think my itching was liver related!!! This is the same itching I

have had for 9 months before I was even diagnosed with AIH. The

itching is so bad I have made myself bleed. I have been allergic to

meds before and the itch is entirely different, and than I have a

rash with it which I don't have now. This nurse was rather rude, and

I felt very ignorant about hepatitis treatment. I called my doctor

friend who is a hepatitis expert, she was so sweet. She said she

didn't think the nurse knew much about hepatitis, but why would her

doctor not be better informed? She also said that when you taper on

predisone and itching becomes worse, it could mean that the liver

enyzmes could be climbing and need to be checked. She said on the

higher doses of predisone, it will mask symptoms, so you could have

something going on and not know it until blood tests are done or

symptoms become bad enough to show up. Anyway, it was very

upsetting, she was questioning my meds as if I was some kind of

hypochondriac. This is only nurse I have had problems with, the

others have been very kind and helpful. When the doctor she works

with relayed his response, they told me to call my primary physician

and have her help me!!! Last fall, I was so sick with the flu, I had

a cough for 2 months and one of the nurses told me I didn't need to

be seen, even though I have asthma, and I had all the classic

symptoms of bronchitis or pneumonia. Now they think the spot on my

lung could be from pneumonia that wasn't treated. Now if I get sick,

I have to be extra careful because I could get pneumonia really easy

now. Sorry this is so long, but I am frustrated with my HMO. I

would appreciate any thoughts you might have.

Love,

Ruth

[Guest guest]

Debby

What did you have a bone scan for? What were they looking for? What are the symptom of Sprue? Did they tell you that you were allergic to wheat? Thanks for these answers.

Chris

[Guest guest]

Jeanette,

You should talk to my family, they have to live with me, I have my

days like everyone does, especially on Predisone. lol I was

wondering did you get my e-mail about my doctor friend I sent you?

Thanks so much for your support, it really means a lot. Sending you

hugs. I think I may have made you think I have pneumonia now, I

don't have it now, but last fall I think I may have had it because I

had a bad cough that lasted two months after getting the flu. They

are thinking I may have the spot on my lung from a bout with

pneumonia.

Love,

Ruth

> > Hi Ruth,

> >

> > As far as the itching, what your friend said, " when you taper on

> > predisone and itching becomes worse, it could mean that the liver

> > enyzmes could be climbing and need to be checked " , that IS my

> experience. We had a discussion about this before in the group.

> Someone said it was allergy to the medicine. In my experience, the

> itching was more hive-like, and it happened when the enzymes had

> climbed out of range again. In either case, that nurse was

> definitely insensitive. I would submit a report about it, but

that's

> just me. I always say, I pay them, they provide a service, so they

> can't be rude.

> >

> > As far as HMOs, well, I don't really know what to say. Part of

the

> reason why I work 3 jobs is to pay for my organic food and my

> $260/month insurance which covers 100% and needs no referral, so I

go

> to whoever I want, whenever I want. I don't know how long I can

keep

> that insurance though because I am getting tired from working so

> much, but have no choice at the moment because I got laid off from

my

> primary job a month and half ago....they gave us two extensions

> already and I am praying for another one so that I can set aside

some

> savings. (Sorry, I digressed).

> >

> > I hope your doctor comes back soon and you get properly diagnosed

> for your lung problem. It is something we need to be extra careful

> of if we're on immunosuppressant drug - I had to cancel my trip to

> Dallas to visit my aunt because at the last minute she had

pneumonia

> and it's been on and off since, so can't take the risk.

> >

> > love, aisha

> >

> > [ ] Odd Experience with Nurse

> >

> > Hi Everyone,

> > I just needed to see what you think of an odd experience I had

> > with a nurse today. I called into my HMO to speak to an advice

> nurse

> > in the G.I. department. My new G.I. doctor is on vacation. I told

> > them that I was having severe itching that was keeping me awake at

> > night. The nurse asked me what my medications were, I went

through

> > the long list. She jumped right in, and the first thing she said

> > was, why are you taking predisone? I told her I had AIH, and she

> > said that I shouldn't be taking predisone. I told her it was the

> > gold standard for treatment to AIH. She basically questioned why

I

> > was taking a lot of the other meds. I told her what predisone was

> > used for and that I was on a tapering dose. She reported back to

> the

> > doctor on call. I told her I felt the itching was definitely

> related

> > to my liver. The doctor she spoke with relayed back to me, he

> didn't

> > think my itching was liver related!!! This is the same itching I

> > have had for 9 months before I was even diagnosed with AIH. The

> > itching is so bad I have made myself bleed. I have been allergic

to

> > meds before and the itch is entirely different, and than I have a

> > rash with it which I don't have now. This nurse was rather rude,

> and

> > I felt very ignorant about hepatitis treatment. I called my

doctor

> > friend who is a hepatitis expert, she was so sweet. She said she

> > didn't think the nurse knew much about hepatitis, but why would

her

> > doctor not be better informed? She also said that when you taper

on

> > predisone and itching becomes worse, it could mean that the liver

> > enyzmes could be climbing and need to be checked. She said on the

> > higher doses of predisone, it will mask symptoms, so you could

have

> > something going on and not know it until blood tests are done or

> > symptoms become bad enough to show up. Anyway, it was very

> > upsetting, she was questioning my meds as if I was some kind of

> > hypochondriac. This is only nurse I have had problems with, the

> > others have been very kind and helpful. When the doctor she works

> > with relayed his response, they told me to call my primary

> physician

> > and have her help me!!! Last fall, I was so sick with the flu, I

> had

> > a cough for 2 months and one of the nurses told me I didn't need

to

> > be seen, even though I have asthma, and I had all the classic

> > symptoms of bronchitis or pneumonia. Now they think the spot on

my

> > lung could be from pneumonia that wasn't treated. Now if I get

sick,

> > I have to be extra careful because I could get pneumonia really

easy

> > now. Sorry this is so long, but I am frustrated with my HMO. I

> > would appreciate any thoughts you might have.

> > Love,

> > Ruth

> >

> >

> >

> >

> >

[Guest guest]

Ruth, you bring up a point that a GI nurse SHOULD know better, but often they don't. One time, when I was first dx with Celiac Sprue, the nurse asked what I was in to see the doctor for. I told her that I had Celiac Spure (this was after I had the biopsy to confirm the dx). Anyway, since I am rather "fat" she looked at me, shook her head, and walked out of the room saying, "Sure."

Well, after the doctor read the report, etc., he ordered a bone scan. The nurse asked for the dx code for the scan so the insurance would pay for it. When he announced, "She has Celiac Sprue", I thought the nurse would just roll up and die! She was shocked! Well, not ALL people fit the typical mold of being stick thin with celiac....I am one. In fact, 5% are obese. Our bodies go into a starvation mode and save every ounce of nutrition becuase our bodies just seem to think we are going to starve.

Oh welll....that is another one of the "rare" diseases that I have. I have learned to be a fighter and won't let them intimidate me much any more. I KNOW what I have....they don't!

debby

[ ] Odd Experience with Nurse> > > Hi Everyone,> I just needed to see what you think of an odd experience I had> with a nurse today. I called into my HMO to speak to an advice nurse> in the G.I. department. My new G.I. doctor is on vacation. I told> them that I was having severe itching that was keeping me awake at> night. The nurse asked me what my medications were, I went through> the long list. She jumped right in, and the first thing she said> was, why are you taking predisone? I told her I had AIH, and she> said that I shouldn't be taking predisone. I told her it was the> gold standard for treatment to AIH. She basically questioned why I> was taking a lot of the other meds. I told her what predisone was> used for and that I was on a tapering dose. She reported back to the> doctor on call. I told her I felt the itching was definitely related> to my liver. The doctor she spoke with relayed back to me, he didn't> think my itching was liver related!!! This is the same itching I> have had for 9 months before I was even diagnosed with AIH. The> itching is so bad I have made myself bleed. I have been allergic to> meds before and the itch is entirely different, and than I have a> rash with it which I don't have now. This nurse was rather rude, and> I felt very ignorant about hepatitis treatment. I called my doctor> friend who is a hepatitis expert, she was so sweet. She said she> didn't think the nurse knew much about hepatitis, but why would her> doctor not be better informed? She also said that when you taper on> predisone and itching becomes worse, it could mean that the liver> enyzmes could be climbing and need to be checked. She said on the> higher doses of predisone, it will mask symptoms, so you could have> something going on and not know it until blood tests are done or> symptoms become bad enough to show up. Anyway, it was very> upsetting, she was questioning my meds as if I was some kind of> hypochondriac. This is only nurse I have had problems with, the> others have been very kind and helpful. When the doctor she works> with relayed his response, they told me to call my primary physician> and have her help me!!! Last fall, I was so sick with the flu, I had> a cough for 2 months and one of the nurses told me I didn't need to> be seen, even though I have asthma, and I had all the classic> symptoms of bronchitis or pneumonia. Now they think the spot on my> lung could be from pneumonia that wasn't treated. Now if I get sick,> I have to be extra careful because I could get pneumonia really easy> now. Sorry this is so long, but I am frustrated with my HMO. I> would appreciate any thoughts you might have.> Love,> Ruth> > > > >

[Guest guest]

Ruth,

What you need to tell ignorant nurses is I know what my body needs and make her listen. You could have gone to ER they have to check your blood levels and treat you. Makes me so sad that the education is so not there. We all need to go out and teach the world about who we are and what we need.

gayle/trans.6-99

galye@... @`

\I/

[Guest guest]

All this discussion just reminded me of once I had to go to ER middle of the

night because I had a severe breakout of hives and was worried if it might

be the liver enzymes climbing...and the ER doctor (who, by the way, was in

his late 40s or early 50s) asked me what kind of liver problem I had, and I

said, " Autoimmune Hepatitis " ... the next question he asked was, is it Hep A,

B or C? And I said no, it's autoimmune...and he insisted for a while that it

had to be one of the alphabet hepatitis.. UNTIL I explained to him what

causes Autoimmune Hepatitis! My hepatologist later surmised that the ER

doctor, being older, might have been used to the term " lupoid hepatitis "

(because AIH used to be misdiagnosed as lupus, having some overlapping

symptoms) or " chronic active hepatitis " , and also AIH is a relatively rare

liver disease. Oh well...

aisha

>From: " tdcc2000 " <tdcc2000@...>

>Reply-

>< >

>Subject: Re: [ ] Re: Odd Experience with Nurse

>Date: Fri, 12 Jul 2002 14:46:27 -0700

>

>Ruth, you bring up a point that a GI nurse SHOULD know better, but often

>they don't. One time, when I was first dx with Celiac Sprue, the nurse

>asked what I was in to see the doctor for. I told her that I had Celiac

>Spure (this was after I had the biopsy to confirm the dx). Anyway, since I

>am rather " fat " she looked at me, shook her head, and walked out of the

>room saying, " Sure. "

>

>Well, after the doctor read the report, etc., he ordered a bone scan. The

>nurse asked for the dx code for the scan so the insurance would pay for it.

> When he announced, " She has Celiac Sprue " , I thought the nurse would just

>roll up and die! She was shocked! Well, not ALL people fit the typical

>mold of being stick thin with celiac....I am one. In fact, 5% are obese.

>Our bodies go into a starvation mode and save every ounce of nutrition

>becuase our bodies just seem to think we are going to starve.

>

>Oh welll....that is another one of the " rare " diseases that I have. I have

>learned to be a fighter and won't let them intimidate me much any more. I

>KNOW what I have....they don't!

>

>debby

> [ ] Odd Experience with Nurse

> >

> >

> > Hi Everyone,

> > I just needed to see what you think of an odd experience I had

> > with a nurse today. I called into my HMO to speak to an advice

> nurse

> > in the G.I. department. My new G.I. doctor is on vacation. I told

> > them that I was having severe itching that was keeping me awake at

> > night. The nurse asked me what my medications were, I went through

> > the long list. She jumped right in, and the first thing she said

> > was, why are you taking predisone? I told her I had AIH, and she

> > said that I shouldn't be taking predisone. I told her it was the

> > gold standard for treatment to AIH. She basically questioned why I

> > was taking a lot of the other meds. I told her what predisone was

> > used for and that I was on a tapering dose. She reported back to

> the

> > doctor on call. I told her I felt the itching was definitely

> related

> > to my liver. The doctor she spoke with relayed back to me, he

> didn't

> > think my itching was liver related!!! This is the same itching I

> > have had for 9 months before I was even diagnosed with AIH. The

> > itching is so bad I have made myself bleed. I have been allergic to

> > meds before and the itch is entirely different, and than I have a

> > rash with it which I don't have now. This nurse was rather rude,

> and

> > I felt very ignorant about hepatitis treatment. I called my doctor

> > friend who is a hepatitis expert, she was so sweet. She said she

> > didn't think the nurse knew much about hepatitis, but why would her

> > doctor not be better informed? She also said that when you taper on

> > predisone and itching becomes worse, it could mean that the liver

> > enyzmes could be climbing and need to be checked. She said on the

> > higher doses of predisone, it will mask symptoms, so you could have

> > something going on and not know it until blood tests are done or

> > symptoms become bad enough to show up. Anyway, it was very

> > upsetting, she was questioning my meds as if I was some kind of

> > hypochondriac. This is only nurse I have had problems with, the

> > others have been very kind and helpful. When the doctor she works

> > with relayed his response, they told me to call my primary

> physician

> > and have her help me!!! Last fall, I was so sick with the flu, I

> had

> > a cough for 2 months and one of the nurses told me I didn't need to

> > be seen, even though I have asthma, and I had all the classic

> > symptoms of bronchitis or pneumonia. Now they think the spot on my

> > lung could be from pneumonia that wasn't treated. Now if I get sick,

> > I have to be extra careful because I could get pneumonia really easy

> > now. Sorry this is so long, but I am frustrated with my HMO. I

> > would appreciate any thoughts you might have.

> > Love,

> > Ruth

> >

> >

> >

> >

> >

[Guest guest]

Ruth,

I'm so sorry you had to deal with an ignorant, harsh person who was

supposed to be there to help you. I know we all have our bad days

but that still doesn't allow her to take it out on you. She

obviously doesn't know beans from apple butter about liver disease.

Doesn't sound like the doctor knows anything either. Do you have any

doc who would order blood work for you? I don't know how long your

doc is going to be on vacation but I think you need to have it done

as soon as possible. It may not be caused by your liver but you need

to rule that out.

Sorry if I sound harsh. I don't handle anyone treating my friends

badly. Want me to punch her out for you? LOL

Hugs & Scratches,

Debbie/FL

[Guest guest]

Ahhhhh...I am going to have to remember to tell the older doctors that it is Lupoid Hepatitis! They do know that term! Thanks for reminding me!

debby

[ ] Odd Experience with Nurse> >> >> > Hi Everyone,> > I just needed to see what you think of an odd experience I had> > with a nurse today. I called into my HMO to speak to an advice> nurse> > in the G.I. department. My new G.I. doctor is on vacation. I told> > them that I was having severe itching that was keeping me awake at> > night. The nurse asked me what my medications were, I went through> > the long list. She jumped right in, and the first thing she said> > was, why are you taking predisone? I told her I had AIH, and she> > said that I shouldn't be taking predisone. I told her it was the> > gold standard for treatment to AIH. She basically questioned why I> > was taking a lot of the other meds. I told her what predisone was> > used for and that I was on a tapering dose. She reported back to> the> > doctor on call. I told her I felt the itching was definitely> related> > to my liver. The doctor she spoke with relayed back to me, he> didn't> > think my itching was liver related!!! This is the same itching I> > have had for 9 months before I was even diagnosed with AIH. The> > itching is so bad I have made myself bleed. I have been allergic to> > meds before and the itch is entirely different, and than I have a> > rash with it which I don't have now. This nurse was rather rude,> and> > I felt very ignorant about hepatitis treatment. I called my doctor> > friend who is a hepatitis expert, she was so sweet. She said she> > didn't think the nurse knew much about hepatitis, but why would her> > doctor not be better informed? She also said that when you taper on> > predisone and itching becomes worse, it could mean that the liver> > enyzmes could be climbing and need to be checked. She said on the> > higher doses of predisone, it will mask symptoms, so you could have> > something going on and not know it until blood tests are done or> > symptoms become bad enough to show up. Anyway, it was very> > upsetting, she was questioning my meds as if I was some kind of> > hypochondriac. This is only nurse I have had problems with, the> > others have been very kind and helpful. When the doctor she works> > with relayed his response, they told me to call my primary> physician> > and have her help me!!! Last fall, I was so sick with the flu, I> had> > a cough for 2 months and one of the nurses told me I didn't need to> > be seen, even though I have asthma, and I had all the classic> > symptoms of bronchitis or pneumonia. Now they think the spot on my> > lung could be from pneumonia that wasn't treated. Now if I get sick,> > I have to be extra careful because I could get pneumonia really easy> > now. Sorry this is so long, but I am frustrated with my HMO. I> > would appreciate any thoughts you might have.> > Love,> > Ruth> >> >> >> >> >

[Guest guest]

Debbie,

You made me laugh so hard, I cried!!! Thanks for being such a

great friend, if I get anyone picking on me, boy I am going to get

you in my corner!!!! By the way, same goes for you, I love your

scrappy attitude, you know that is the kind of fighting spirit that

will help us get well!! I love you for helping me regain my sense of

humour and just showing me how much you care, what a jewel you are

friend!

Love,

Ruth

> Ruth,

> I'm so sorry you had to deal with an ignorant, harsh person who was

> supposed to be there to help you. I know we all have our bad days

> but that still doesn't allow her to take it out on you. She

> obviously doesn't know beans from apple butter about liver

disease.

> Doesn't sound like the doctor knows anything either. Do you have

any

> doc who would order blood work for you? I don't know how long your

> doc is going to be on vacation but I think you need to have it done

> as soon as possible. It may not be caused by your liver but you

need

> to rule that out.

> Sorry if I sound harsh. I don't handle anyone treating my friends

> badly. Want me to punch her out for you? LOL

>

> Hugs & Scratches,

> Debbie/FL

[Guest guest]

Ruth, I'm sure you are frustrated with your HMO. I would be too! A lot of

people have never heard on AIH-the nurse who I saw at the hospial when I had

my biopsy had never heard of it. They just don't know, they are human, yes

her doc should have educated her, maybe he did and she's just ignorant.

There are people like that, I'm sure you know. Don't let this experience

diminish your positive attitude! I'm sure the itching can be maddening, so

take really good care of yourself! Hopefully, someone on this group line

can give you advice for a good solution to that problem, barring the doc

adjusting your meds. When you get someone ignorant like that, don't take it

personally. Just ask for someone else! They'll get the message. I hope

you get this resolved. Keep positive! Cathie

>From: " hrby97111 " <hrby97111@...>

>Reply-

>

>Subject: [ ] Odd Experience with Nurse

>Date: Fri, 12 Jul 2002 09:23:39 -0000

>

>Hi Everyone,

> I just needed to see what you think of an odd experience I had

>with a nurse today. I called into my HMO to speak to an advice nurse

>in the G.I. department. My new G.I. doctor is on vacation. I told

>them that I was having severe itching that was keeping me awake at

>night. The nurse asked me what my medications were, I went through

>the long list. She jumped right in, and the first thing she said

>was, why are you taking predisone? I told her I had AIH, and she

>said that I shouldn't be taking predisone. I told her it was the

>gold standard for treatment to AIH. She basically questioned why I

>was taking a lot of the other meds. I told her what predisone was

>used for and that I was on a tapering dose. She reported back to the

>doctor on call. I told her I felt the itching was definitely related

>to my liver. The doctor she spoke with relayed back to me, he didn't

>think my itching was liver related!!! This is the same itching I

>have had for 9 months before I was even diagnosed with AIH. The

>itching is so bad I have made myself bleed. I have been allergic to

>meds before and the itch is entirely different, and than I have a

>rash with it which I don't have now. This nurse was rather rude, and

>I felt very ignorant about hepatitis treatment. I called my doctor

>friend who is a hepatitis expert, she was so sweet. She said she

>didn't think the nurse knew much about hepatitis, but why would her

>doctor not be better informed? She also said that when you taper on

>predisone and itching becomes worse, it could mean that the liver

>enyzmes could be climbing and need to be checked. She said on the

>higher doses of predisone, it will mask symptoms, so you could have

>something going on and not know it until blood tests are done or

>symptoms become bad enough to show up. Anyway, it was very

>upsetting, she was questioning my meds as if I was some kind of

>hypochondriac. This is only nurse I have had problems with, the

>others have been very kind and helpful. When the doctor she works

>with relayed his response, they told me to call my primary physician

>and have her help me!!! Last fall, I was so sick with the flu, I had

>a cough for 2 months and one of the nurses told me I didn't need to

>be seen, even though I have asthma, and I had all the classic

>symptoms of bronchitis or pneumonia. Now they think the spot on my

>lung could be from pneumonia that wasn't treated. Now if I get sick,

>I have to be extra careful because I could get pneumonia really easy

>now. Sorry this is so long, but I am frustrated with my HMO. I

>would appreciate any thoughts you might have.

>Love,

>Ruth

>

>

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