Frustrated with DOCTOR

[HelloKelle]

I swear, I promised myself that if I didn't get some answers today, I'd switch doctors. I read these posts and most everyone is so informed about their HCV and I feel like a dumb a**. What is my VL?  I dunno. Are you SVR after 4 weeks? I dunno.

My doctor will NOT give me any pain medication, either. I'm not wanting to have a party with them, I just want some damn relief so I don't have to writhe around in bed and can function. I told the nurse a few minutes ago about wanting pain meds and she said, real snippy.."Oh no, we don't do that. Our patients dont require pain medication."  What's the big damn deal?? Do any of you have these issues?  When the nurse called with my test results, I said "Well, how's my test look. " She said "Fine. Everything's fine."  FINE? What does FINE mean??  Errggghhhh!

Aren't we supposed to get a test to see where our viral load is after four weeks? What else am I supposed to be getting that I'm not.

Please, someone who is educated on this, please help me. I don't feel good and I don't want to deal with this at all.

[IAmTheWalrus]

Great idea. Call the page "TX for Dummies"  :-)  Maybe you can get it into Barnes & Noble!

Happy rides!

Brent

[IAmTheWalrus]

WOW, do I feel your pain. The TX kind and the doctor kind. You HAVE to be your own advocate. Tell him you want a copy of every test result. That is the only you can become educated about your condition. Do not take no for an answer. It is very important you be an active part of treatment decisions, even though some doctors find it easier to keep the patient out of the loop. I had the same problem myself with the MDs. I have felt much better since getting all of my records and forcing them to keep me copied on all new test. I also changed doctors when I found out, through my investigation, when the nurse was saying everything was fine, they didn't even look at or record my test results. Things are better now with the ner MD.

I hope you can get on top of this as it will bring you a little peace of mind if nothing else, to have some knowledge about your status and treatment.

Best of luck to you in this fight. Hope you'll stick around here and be a part of the forum.
Brent

[Marcia2202]

Am looking forward to your list. What are you gonna call it? TX MILE STONES ??? Isn't that a good one?

Marcia

[Lady Lauri]

I started a health page on this. I'm in a rush so will re-vamp but also going to post on this. In over a yr. reading here.....I never even looked in the health pages! So we'll need to remind new people of them. I hate seeing a poster say "I dunno when I was UND" at about week 16!!!
  I saw your list. I am thinking of trying tramodol (sp). Not on AD's but good to see that.
I'll list what I think of, others can add to it or post on the thread and I'll add it.

Thanks girl....ashamed I never even looked there !!

LL

[Marcia2202]

Thank you, that is a great idea. Can you do it on the other forum. I have already started some other threads concerning tx and will make some lists to put them up on the health pages. I've put up a list on tx rescue drugs yesterday. Still working on the DO's and DON'Ts. Marcia

[Lady Lauri]

We really should make a list, have it available for all new forum members, new in Hep C, tx, etc. on what they need to ask, get done in this. I see way too many not knowing their VL until week 12 or not getting info. they should. I'll start the thread  and others can add to it?

LL

[Lady Lauri]

Not sure if I have welcomed you yet :) So many new members past few mths.

First of all, I was a total 'dumb a*s' when I first started reading here ! This is where you'll soon be so much more educated in this. We had no reason to know all about this disease, the meds, the UND's and SVR's before.

My Dr. is very tight on the pain meds. I tend to think this way after reading here on this subject and my Dr.'s attitude on them… (I have a very good Dr, BTW)......this disease is, no matter how we want the stigma to be gone, is very often gotten thru drug use, they do deal with many recovering addicts so I think they are very leery on them, He was okay with what little I did, he okay'd them as safe, just wouldn't prescribe much and he knows I have no past addiction history at all. I got them from GP and he knew that. NP said they have to many addiction problems with patients-backing up my previous comment. I don't even do the prescribed amount and I suffer long before I finally take one. That said, there IS often a lot of pain in this tx! The migraines, the muscle pain were very hard. For me (and varies with each) 1 pain pill made it at least tolerable-but never gone. The days of Riba insomnia, where your awake all night, even when you do sleep it's a half awake sleep. Xanax helped me with that and he would prescribe those (figure that out!)  Days with little sleep just magnify the sides, take what little strength we have.  11 weeks post, I still have a lot of pain, yet still use them very little.

You need to be a squeaky wheel! Make a list of the info. you want, tell them you want it! Call them, e-mail them!  I get so mad when a tx-er doesn't get a 4 week VL test, as stated, VERY important in this! Gives many hope to keep going! Helps many to know they need to extend tx. ALL Dr.’s doing tx should know this!

Hector…..really tired, brain dead right now but, I thought the ‘safe’ amount of Tylenol is 500mg no more than twice a day?
...."Does the U.S. health system treat smokers with lung cancer?  Former alcoholics with liver disease?.........

Exactly, smokers still smoking get treated. (and I am a smoker). My brother-in-law is being refused ANY follow up on his recent dx of Hep C because he tested positive for marijuana at the VA.  No VL, no bx, not even an app. with a liver Dr. He has to test clean for 6mths. first. Honestly, he smokes as he is very ill, can not eat, it helps him. His wife smokes as she's been in cancer chemo nearly all of past 8 years! She asked his Dr. why she hasn't been taken off of chemo as she smokes it-he had no answer for that. I don't use it, but I do understand some using it and don't feel that’s a reason to not treat a veteran (anyone). The man has too many health problems to treat but should at least get a bx to know where his liver is in all this. He has never been an IV user. Very frustrating!

Good luck Kelle, stomp your feet!

LL

[jmjm530]

I think asking for "pain meds" can raise a red flag. A better approach might simply be to discuss your symptons and let them make a recommendation. If you don't feel they are helping you enough, seek another doctor. As to getting information, always ask for copies of all your labs. That way you're able to fill in the blanks they may leave when explaining things to you. It also gives you something to bring to another doctor if things come to that.

-- Jim

[HectorSF]

Fret,

Thanks for pointing out that us HEP Cers have just as much right to be treated as anybody else in society. Does the U.S. health system treat smokers with lung cancer?  Former alcoholics with liver disease? etc, etc.. Of course we do! We are paying our taxes and our insurance premiums aren't we?

Others may disrespect us for one reason or another. There will always be narrow minded ignorant people in the world. We can't control how others think. But we can demand to be treated fairly. We are consummers of the medical and pharma industries. Without us they would be out of business. Remember in the 80s-90s when the healthcare industry didn't respond to the needs of people with HIV? Did they say "oh well, nothing we can do but die."??? No they demanded to be treated fairly and they ended up making the entire U.S. healthcare system more responsive and better for all of us. Ever wonder why there is free HCV tx meds available now?  Do you think the drug industry did that out of there own generousity? They were shamed into it by the AIDS activits who asked the question, do people deserve to be ill or die because they can't afford treatment? Besides it's good PR for the drug companies now. Ever see what the profits are for big pharma? They can afford it believe me. Who the biggest lobby in Washington. Well, I won't go on I think you get the picture...

I must admit I love living here in San Francisco were I have recieved world class medical care for my HCV and cirrhosis without anyone ever judging me. All my docs care about is how I'm doing. Period.
Hector

[GSDgirl]

The docs wrote me scripts for soma for the muscle pain and it also helped with the sleeping issues.  I was in the same boat as you with my first doc, unfortunately I didn't switch until the end of treatment (tx).  My new guy is nice and more knowledgable  but I wish I had been seeing him from the beginning.  Your GP should be involved in this also and he writes the muscle relaxors.  I asked all 3 of my docs if Soma would hurt my liver, they said no.  I am leary about pain pills, don't like them or the tylenol in them so the muscle relaxors were my choice and they helped, hubby does not like me on them but this too will pass.

Denise

[fretboard]

I don't know what your payment situation is and you wouldn't think that would matter, but it does to an extent.  I have a civil service job and I have very good insurance, I had to ask for everything, every little dang! thing.  I don't even get to see a Heptologist unless I want to go to a different address which I will be looking into, I think.  I have a GI and he was always acting, "like hey it ain't no big deal you have HepC, just don't ask questions".  Well, I started asking and ask away I did, finally he got on the computer and expained everything to me and answered all my questions.  You think like a regular or normal person, that the doctor will fill you in, but there's still a huge stigma with this illness and you will still be dissed by people in the medical profession.  With that said, I don't have any problems anymore with either of my doctors.  I get all my questions answered and I don't mind asking at all.  It's my health and I want to know everything I can.  If people are gonna dis-respect me cause I have a drug addicts disease well that's just not true and I will call them on it as far as I can.  Yes I am a former addict, but that's in the past so they shouldn't and they can't hold that against me.   God Bless

[Deb_c430]

ADVOCATE for your self!  They work for you, not the other way around, It is the law you can have copies of all labs, Doc notes, ect.

A lot of folks don't care or better to say they do not know what to ask for.   They are confused and  trusting. You should  hopefully be bale to trust your GI, but also  you have to take care of you too!  

I also suggest, getting a folder keep labs copies, and any questions you have!

Deb

[HectorSF]

Of course you are frustrated! You are being treated poorly. Refuse to be a victim. Assert you rights as a patient.

As far as pain meds:
What Stage of liver disease did your biopsy indicate? Inflammation?
I could take Tylenol up to 2000 mg per day. (I have cirrhosis so maybe you can take more). Yeah, I know. Tylenol? Not the greatest pain relief in the world. The fact is though pain meds and liver disease don't mix. Pain meds will put more stress on your liver. What affect that might have on your tx I can say not knowing all you medical details. The other thing is tx can be rough for some of us. There can be many side effects besides being bed ridden and feeling like cr@p everyday. What will your doctor do if you become anemic, get riba rash, get low platelets etc. etc. Unfortunately tx is no "party". There are some not so pleasant things you will have to live with. No pain pill is going to make you feel good or like your old self if you are one like myself who has a rough time with treatment. Wish I had better news but that's based on my experience anyway.
Other people here may have other options for you that I didn't have.

Test results:
Now this is something you can do something about.
Yes, you want to know how you are responding to tx so you need to know your VL. You want NUMBERS!!! For example: Maybe you were UND at 4 weeks. That means you have a 90% chance of SVR. Important? Absolutely!!!
Don't ask the nurse how your test results look. Just say "I'd like a copy of the test results, please". No need to say anything more. They have to give it to you.
You don't need her evaluation of "fine". Get it and post it up here. You'll learn alot more than "fine".
You have a legal right to have copies of all your medical records. It's the law! It your body. Your medical records belong to YOU, NOT your nurse or doctor. You're paying them right? They work for you. Remember that. Tell them you want a copy of every test you have had done to this point and every future test. They can't say no!!! This is their job they know you have a legal right to them. If they refused patients access to their records they would be out of business long ago. They are just trying to put you off. Don't let them. Be assertive. Not aggressive. They will comply. They have to.

Sadly I see these problems arise too often where the patient and doctor don't have an agreement BEFORE treatment (when you have the energy and clearness of mind) about how they will work together during tx. It takes both of you working together for the best results from tx.

Hang in there!
If you can't work some mutual agreement out with this doc you may need another.
Hector

[whitetigercubs2]

i dont have any answers for you except i am in the same boat. i was diagnosed a little over a year ago. i am just finding out what type of hep c i have and what stage. the only thing i can suggest is start throwing a little attitude back. let them know exactly how you feel, that you dont know what fine is, start asking specific questions. i have been reading these posts for about a week now and i dont know what vl or svr stands for. your not alone. and i know someone has the answers you are looking for

[Deb_c430]

Tell them you want more than a fine for an answer,   YOU NEED TO ADVOCATE for YOURSELF!  

Ask specific questions, where is my WBC, where is my RBC,   by law you can have copies of all your records. Period, labs everything.

Pain pills I dunno, I am on infergen , and have never used pain pills.  I also was in a terrible accident and have pain constantly.  I only take tylenol extra strength.Usually at night. There are others here who can you give you a better idea for that.

But truly do not let them sidebar you on labs,   Lots here will help you read them,   also sites.  

VL is what determines your progress. Call them back and ask them to mail you all labs,   EVERYTIME, and follow up on it, or they will forget.

Yes, you should of gotten a test called a PCR.

try and relax,   I know easier said than done,

Advocate for yourself!


Take care

Deb