My m.d. won't refer me to hep c specialist for 3 months plus

[cindyhamm]

Hi again.  Well,  Iwent for my hep a and b vaccines yeserday.  This place I go to is a residency program, a resident sees you 1st then consults with an M.D. then he sees you.  They told me over a year ago I'd need the vaccines and told me, on my first visit "if the hepatitis gets that bad, we could give you an ANTIBIOTIC to treat it".  (wouldn't that be nice)  I've only gone there to get a script for a mammogram, the essentials.  Other than that I do NOT trust them.  They knew I had hep c from day one and never sent me for my genotype/viral load bloodwork. I learned that I needed that specific bloodwork as a result of a phone call to an 800 hepatitis hotline.  So I'm there for my vaccines.  The resident, although I presented with no chest pain, etc., decided to do an EKG on me (said it's due to my age :49 till August).  They had me pretty scared. Then the resident asks me how I got the hep c.  I told her I used a needle once.  And that's the God's truth..when I told her I'm constantly fatigued, have constant stomach distress, she said it could be in my head cause I know those are some of the symptoms.  Ok, throwing up almost every morning, constantly running to the bathroom is in my head...i'm crazier than I thought :) BTY, I'm slow in alot of ways.  The same year I used a needle (once) Ihad the guy across the street (an amatuer tattoo artist) give me a tattoo.  I'm friends with his g.f. and she has hep c also but she never used drugs (she's an alcoholic).  Yesterday, I put it together, I could have gotten the hep from the tattoo equipment, somehow that seems more likely.  Either way, I've had it since 2005.  So the resident brings this Dr.in who treated me like some junkie scum off the street.  I cancelled my last appt. 2 weeks ago cause my ICM worker (who drives me to hard to get to places) from the Counseling Center was on vacation that week.  They told me they'd get another ICM worker to take me but 2 hrs prior to appt had no one.  Didn't feel good at all that day so I decided to cancel and reschedule  for a time when my ICM worker would be back from vacation.  The mean Dr. told me that I have to be committed to this treatment and that I'm not a reliable patient.  I tried telling him why I cancelled my last appt. but he kept talking over me.  He said I missed many appointments, which I know I didn't because I only go there maybe once a year for my mammogram prescription.  (ICM worker doesn'lt remember me making and then cancelling appts. and on last year's calender ...I keep them...I only had marked one appt with this resident last year).  He said he CANNOT refer me to a GI (I had 2 specialists names and #s with me...but I have to be referred...soonest appt was end of August). I got mad and asked why they told me they'd treat me with antiobiotics if it "got bad", why I didn't get the vaccines on my first visit there when they told me I'd need them cause I'm more likely to contract hep a or b.  Then I asked, why didn't  YOU send me for bloodwork for my viral load and genotype???  I received no response; just his stupid a.. telling me I wasn't a reliable  patient and they refer alot of hep c patients to specialists, only to have the specialists call them shortly thereafter to tell them the patient stopped showing for appointments.  (I deducted possibly the patient, if an addict, started getting high again or the treatment was too unbearable so they quit). The Bottom Line is that in order for them to refer me to the GI Dr. or anyone for hepatitis treatment, I would have to make and keep 3 monthly consecutive appointments at the Resident program office.  I was sooooo upset, telling him how much "homwork" I did on the treatment and how my anxiety would build and build waiting for the three mos to be over and then probably have to wait 3 more months before I could get an appt with a specialist.  I asked, "what are you gonna do during the next three appointments I have to make/keep here, you have no medical reason for needing to see me again?...you're just gonna test me and make sure I keep my appt. and then bill Medicare $60.00"  My hands are tied and I'm also very upset that by the time I get to see a GI it'll be around December. Oh,and he also said that the treatment causes depression and he has to speak with my Psychiatrist to "clear me" for the treatment and he's gonna call my pharmacy to make sure I'm actually picking up my Psych meds each month.  I'm gonna report this sob to the medical society when these upcoming 3 months are over.  I also asked him, "what did you want me to do when I had no ride here 2 weeks ago and cancelled, did you expect me to walk here, when I should have been vaccinated on my first appt.there, when they first told me I'd need to be.  I know I couldn't get an appt with another family M.D. anytime soon and so many do not accept Medicare so I'm stuck between a rock and a really hard space.  I'm sorry this post is so long but I'm just soo upset...I really wanted to get this show on the road, I'm apprehensive and stressed out as it is and now I have to wait and prove myself a "reliable patient".  And the way he talked over me and down to me made me feel like, well, really bad.  Thanks for "listening".  (sorry so long, I just had to vent)

[Bill1954]

Cindy, many of us wait months to finally see a specialist; I don’t imagine this is something directed at you personally. They’re often very busy, and HCV normally isn’t an urgent condition to deal with. Take a deep breath, relax and they’ll get to you eventually.

--Bill

[RobertBeWell]

I just got done waiting 3 1/2 months for my first appointment. It's not unusual.

Having said that, if your doc makes you uncomfortable, or treats you as inferior or stupid, I'd tell them "adios" so fast they wouldn't have time to respond.

I worked in a hospital setting for 10 years, and it's true - a lot of doctors have a God complex. Sometimes you have to slap them around a little to remind them of their true status.

Good luck.

[Trinity4]

Cindy,

Sometimes you have to work with what you have.  Under the circumstances best to suck it up until you get under the care of a GI because your resources are limited.

No harm will come by waiting a couple of months.

Trinity

[nygirl7]

Thank God hep c is usually a very slowly progressing disease - in the course of the disease three months or six usually doesn't make a damn bit of difference.

It doesn't matter HOW you get hcv only that you know you have it so you can do something about it. I don't know why they would ask you how you think you got it since it makes no difference at all.

Hepc treatment usually takes a while to get started, there are lots of tests first (EKG is normal testing to see if you have heart conditions, eye exam to get a baseline eye check, blood work, shrink clearance, biopsy, ultrasound) all pretty normal stuff.

The other side is you don't deserve to be treated meanly or unfairly.  If you do have an option too see someone else good. If you don't have any option at all then you'll have to continue to educate yourself and then treat (if you need to after the biopsy) using what you know. many of us have had to guide our doctors as they weren't up to date on hcv treatment. Chances are though you might be a low level of liver damage and not even need to treat yet.  Then you have time to get all of your ducks in a row.

You need to find that part out it will make all the difference in the world.

[cindyhamm]

Thank you all for responding.  I was just anxious to start treatment ASAP, well at least I had my EKG done.  I just on a thread that you should be in the best possible physical condition prior to beginning treatment.  So that's what I'm gonna concentrate on.  Getting this almost 50 year old body in prime shape.  Thank you, all and Trinity for letting me no harm will come by waiting a few more months.  I just hope my (over 7 million) viral load doesn't increase in the meanwhile.  God bless you all.  You are all such wonderful people.  I wish you all a happy weekend!!  This site is such a blessing :)

[cindyhamm]

I hear ya about the Doctor God complex.  I also worked in the medical field (as an office manager for 17 years.  Some do have quite a chip on thier shoulders :)

[RobertBeWell]

Heh, you bet they do Cindy. I remember one time a gastro we had at the hospital was working late one night, and forgot his key to the doctors lounge. Rather than walk to his car and get it, he kicked the door down, went in, and went to sleep.

Ever just wanna reach out and strangle the life out of someone?

[IAmTheWalrus]

Cindy,

Don't be too anxious to treat. It sounds like you do not even know your genotype, viral count and liver condition (from biopsy). I think it way too soon to be making that assumption or decision. Wait until you get all the facts. You may not want to treat right away.

Of course, it sounds like the difficulty you are having is in getting these facts. I empathize with you. Most doctors don't do a very good job of explaining to us the overview of our situation and the likely sequence and time frame of things.

I am very curious what antibiotic the doctor thought might be effective against a virus. Hard to believe an M.D. could be that thick.

I am also curious how you get on Medicare at the tender age of 49. I would like to know the secret so I don't have to work another 10 years before retiring. :-)

Good luck to you!

[cindyhamm]

OMG, how ignorant he was!!  When my SO was in ICU last July after his triple by pass surgery,yeah, those Dr.'s walked around so self-importantly, like they were better than anyone else.  The Cardiologist was nice though, great sense of humor and broke the newsw that he couldn't put in a stent, that he'd need the open heart surgery, in a very nice way, actually he made me laugh.  I remember saying to him, "my God, you're so funny".  And his assistant said, very blandly "his first 3 wives didn't think so" :)  I just really think it's frightening that I would never put my complete trust in any Dr.  Like I said, I worked as an offfice mgr for a dermatologist x 17 yrs and he did many office surgical procedures that weren't necessary, anything to hike up a bill to get more money from Medicare/Blue Shield/HMOs, etc.  Not good.  Enjoy the rest of your weekend!  Cindy

[cindyhamm]

Thank you for hinting that I'm young, I'll be 50 in August and not too happy about it,but we all get older...it's nice to "meet" you.  I have recently had my viral load/genotype bloodwork, at the suggestion of a Hep c hotline # phone call.  I had to call the Residency Program to ask for the bloodwork; when i told them in 2009 that I had hep c they just sent me for routine b.w., SGOT/ALT, etc. Both were just a bit elevated.  My genotype is 2b, my viral load over 7 million.  For the past few mos. I've been experiencing alot of stomach distress, extreme fatigue, nausea...not every day but too many days.  I didn't have a liver biopsy performed yet as I was told at the Dr.s office last week that the GI Dr. would order that if he thinks it's indicated.  I was just venting that they're making me "prove" at the Residency Program that I'm a reliable patient; making me go there July, Aug and Sept, making sure I show up for, just to make sure I show up (again, my calendar for 2009 doesn't show any cancelled appts. and my calendar is like a "diary", I keep everything written down.)  I've been on SSD for 3 years, I make "too much money"...not even 1/2 of what Iwas earning...to qualify for Medicaid.  So I have to have Medicare, 98.50 for the Medicare A/B premium comes off  the top of my check in addition to 42.00 for Part D prescription coverage.  It doesn't cover alot; I pay 62.00 in out of pocket expenses for 2 prescriptions each month.  Medicare itself, for Dr.s visits, MRI, Mammograms, bloodwork is billed a certain amount by the provider, approves an amount to pay (e.g.$200.00) and I'm responsible for 20% of that amount.  My medical expenses are high, and that's just for routine medical care.  I work part time, 20 hrs a month to supplement my income.  I'd love to go back to work someday, I miss it terribly.

[R Glass]

“ Oh,and he also said that the treatment causes depression and he has to speak with my Psychiatrist to "clear me" for the treatment and he's gonna call my pharmacy to make sure I'm actually picking up my Psych meds each month.”

I am not taking this guy’s side but I agree 100% with him on this one.
Tx. (treatment) put me in the darkest place I have ever been.
Suicide is one of the side effects of tx.
If you are already on Psych meds, he has a legitimate concern.

[Trish77]

" I remember saying to him, "my God, you're so funny".  And his assistant said, very blandly "his first 3 wives didn't think so" :) "

Now THAT is funny.

But seriously ... I concur that your doc actually sounds like he's doing due diligence and he's having to err on the side of caution.  Seems you can make good use of the waiting time to learn as much as you can so that you're ready with the right questions when it's time to see a GI.  I waited 10 months to see mine.  It's hard to wait when you're so ready but it seems to be part of the process.  Hang in there.

Trish