med advice

[bonnie38]

I'm an R.N. Why do you people waste your time on these sites asking non professionals questions?????
Go to the source. Ask your doctor. What a waste of time posting stuff here.

[alijee]

Mr. you havnt understood this forum utility. it is not for medical support but for psychological support.

[masim58]

I did post a question about a friend of mine being newly diagnosed and lister her serum levels to get an idea of the urgency of the situation.  I got a reply form a fellow group member, not from a person stating any credentials.  If this is the area to ask these questions ( I also asked about telaprevir ) but no reply from the credentialed.  Seems as though someone trained to respond to that post would have commented by now.  Having gotten a reply from someone who has been down the same road and most likely done some of their own research in the past is better than nothing.  Actually I believe experience is the best teacher.

[fretboard]

Being an RN yourself then you know already that there are alot of doctors, RN's and NP's who don't know didley squat about HepC.  Is it truly a waste of time, when most ppl who answer these questions advise the person asking the question, to check with their doctors anyways?  There has always been a disclaimer on this site, so what's the problem?  

Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum.  ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.

[Kristina538]

Why waste our time by bothering to post here at all?

Horses for Courses - different people get support from different areas and this is but one.

P.S.   I'm glad you're not my nurse.   Your lack of empathy and your blind faith in Doctors leads me to believe you may need some assistance.   I can only assume you are under stress.  Have you seen a psychiatrist?

[Kristina538]

Actually,  I have to say thanks.  "Venting" to you 4 hours after my 19th shot stopped me snapping at my family.    Thank goodness for this forum!!!

[pilgrim1951]

Yes, "thank goodness for this forum!!!"  Thanks Kristina.

Forum - Free

Advice - Cheap

Humor - PRICELESS

Pilgrim

[hope_for_my_dad]

are you serious? i have been registered on this site for a whole 9 hours now and i have received more knowledge and empathy than any of my dads doctors or nurses have ever provided. so with all due respect why don't you focus  your energy on something positive. do you know that my dad requested his bloodwork info from his doctor in key west so the doctors in Texas could get his medication ordered and begin treatment to SAVE HIS LIFE. that was was three months ago. he got jacked around by his doctor and "R.Ns" who were paid in full btw. we called every other day "where are his records?" he finally had to go get new blood work done in Texas it took all of three days.that was was last week. his shots arrived yesterday.  so if you want to talk down on someone start with your own.
The people here have done nothing but help me.
thanks
have a great day
please god don't let me ever have a nurse of this nature
Ross

[copyman]

Bonnie,
Perhaps you should spend some time here and become educated. You are exactly why patients feel compelled to come to these internet sites. Incompenent Doc's & RN's like you are why people come to these sites. I see why you would be upset, seeing how the knowledgeable people here can show your patients just how little you really know. Stick to getting the docs their coffee and changing bed pans.........

[charm27]

What a sad comment to make. Obviously you dont know what support we give to each other.....Being in the medical professional you should know better. I guess you dont.

Havent  you ever needed emotional support?
This tx we are on can be very brutal for some.

Hope one day when you find yourself needing help someone is there for you. Like these wonderful people on this forum! We are bllessed to say the LEAST to have each other.
CHARM27

[monkeyfro]

I can only add my comments to support the others, I post here occasionally, I have a forum I found that is a bit more personal, but for your comments...ugh!!!!! Do you even have HCV? your lack of empathy IS appalling....no where in any of these posts does a poster claim to be able to take the place of a doctor...I am sure you will not respond to these comments, maybe because  you see the error of your comment (NOT)!

[Isobella]

Kristina--Right On!!!  Thanks for reminding me why I love this place.

Bonnie-Nice job.wow.

All-Sadly, this is a perfect example of the "future" nurses I spend my time training with.

Izzy

[proud48]

I too am an RN but have gained more knowledge here. I got no help from the HCV nurse and minimum from my GI doctor that treated me. I know everyone here has had my experience and can give me emotional support and discuss problems we all share. It is a wonderful forum.  
proud48

[meakea]

Bonnie, you mean ask our doctors like I asked my doctor last week (without getting a response) and then I made 2 follow up phone calls and I STILL have not gotten a response from him or his nurse.  A freaking week later!  I better check to see if my doc's nurse is named Bonnie.

[Marcia2202]

I don't usually say this to people, but frankly, I think you're full of krap and ...  you are definitely wasting our time...

[jdwithhcv]

We do ask our doctors.  We also post questions, information, supportive messages and helpful citations to studies, data, etc.  Frequently we learn things from the experience of others.  Try opening your mind, you can learn a lot that way.  You may be an RN but unless and until you have walked in our shoes you have no idea what this disease and treatment do to a person's life.  

jd

[nygirl7]

What a great post.

If anything, it went to show why the people in here post on the forum perfectly:

Ignorance of this disease and it's treatments and the lack of understanding and support from medical "professionals".

Many of the old timer members in here have been acknowleged by leading Heptologists as having more knowledge and experience with this disease than most GI/RNs out there who still practice old, out of date, text book only treatment.

Plus - we understand what hep feels like to be treated, we understand the isolation of this disease and the stigma surrounding it more than any non-hepper ever will.

Had i listened only to my doctor and the nurses I would have failed treatment long ago. there were very NICE people but not current on the latest developments at all. Most likely you are not either judging by your question.

However, do to the fact that people in here knew of studies that the DOCTOR was not even yet aware of - I was able to get a second opinion on my treatment by Dr. Ira Jacobson ***********(who was one of the docs that acknowledged the impressive 'education' of the members in here as being superior to most GIs)********** one of the TOP doctor/researchers in the world in the field of heptology - and was able to follow the NEW DEVELOPING PROTOCOLS and have success.

My own GI admits without this forum I probably would not have gotten rid of this disease and he is a big NY based doctor!

So there you go.  We come here because of ignorance - a good case which you just proved pretty well.

[FlGuy]

I gotta wonder about a couple of things. First, she introduces herself as an R.N. which automatically gives her tons of credence.  At least she has a lot of confidence in her accreditation which probably very important to her, if no one else.  Second, she actually went to the trouble of resigstering on this site and then wonders why people come to this site. A waste of time posting here? Apparently, not for her. With that logic, she needs to get a government job.

[nygirl7]

Oh by the way thanks.....

We've been having some "family" type in fighting on the forum lately and this is the best thing anybody could have done to make us come together as a group.  WE can pick at each other but don't anybody else dare do it cause we ARE connected, each and every single one of us on here!

[susan400]

Breast cancer patients have a support system, Diabetics have a support system..., those of us who have Hepatitis B or C need support, too!   I think that you need to be in another field than nursing because you obviously do not have an understanding of what a patient goes through and don't have any compassion.

Susan400

[jdwithhcv]

Good point.  I wonder if she will spread her particular brand of sunshine elsewhere on MedHelp.  So far it has been confined to us heppers.  Makes me feel kind of special!

[jdwithhcv]

Hey, Bonnie, I have a great idea.  Head on over to the HIV prevention board and post something superior sounding there.  I bet those folks (Teak in particular) will give you an anatomy lesson - might even rip you a new one.  Then you can join the community on the Ostomy board where the subject matter is ALWAYS krap!

jd

[Willy50]

All the above and a few more things....

Since getting good care is paramount when you have a life threatening disease anything that one can add to ones care can likely have further benefit.

Since you are a nurse (although you don't say what type or area of expertise) you must be aware that all doctors are not equally proficient.  You must also be aware that some don't have cutting edge information, may not even be cutting edge hepatologists or gastros.  Some of the people who recieve "care" from doctors do not get state of the art treatments or doctoring.  Sadly some get inadequate care.

On the other hand..... many of the people here do have some of these leading edge doctors and they are good enough to share what their doctor does and WHY.  I'm afraid that many doctors don't bother sharing the "why" with their patients.

Unfortunately.....we are also aware that on occasion patients don't even get the proper care they should from doctors.  It is not typical..... but neither is it uncommon.  I can recall a number of gaffs that doctors have made simply because they are not up on correct treatment protocols, are just flat out wrong......or just in too big of a hurry.  Boards like this can at times actually save a treatment that is about to go wrong.

Boards like this can serve to educate those who are infected.  What better way to help fight an illness than to become a better patient.  If we learn about many aspects of the disease we can help ourselves and help our doctor help us.

One of my earliest on line friends phrased it quite well.  He said; "before I found this board..... not only did I not know the answer...... I didn't even know the question."

Ask yourself...... IF you wanted information.....a "second opinion" would you be happier with just on reply.....ot 30.  Keep in mind that each of the 30 replies might either add to the information..... or qualify what people had written or provide interesting sidebars...... or one might get information on what other different doctors did in a similar event.  One ends up with a banquet of information instead of a single reply.  Which would you prefer?  (and ...... how are you finding this in the way of these answers to your question so far?)

These boards also provide humor, company and support for the HCV infected folks.  Did you know that people who have a support base have better medical results than those who go it alone?

I hope that some of these answers serve to open your eyes a little.

best,
Willy

[Trinity4]

Echo what Nygirl says.  Had the people on this forum not given me information regarding the latest treatment protocols, I would have never known about extending treatment, henceforth, my chances of SVR would have been greatly reduced given the treatment protocols my current doctor follows.  I learned on this forum and sought out a doctor who confirmed exactly what all the generous and caring people here had already told me.  So where's your logic with that?  This forum is not only for psychological support.  There is a wealth of information for those suffering with physical side effects like myself.  
Really, you are clueless, and should not speak of what you do not know.  Because of your lack of knowledge and compassion about this disease, you gave us little jolt, a reconfirmation of how much we really need and appreciate each other on this forum. I thank you for that.  If you feel you have any more intelligent information to contribute, please feel free to do so.
Trinity

[charm27]

That staement was perfectly said. COuldnt of said it any better if I tried.

Take care
CHARM