Bedside manner

[suezeeque]

Reading a few recent posts has me wondering what others experienced when they were diagnosed.  Who diagnosed you?  Was it your family doctor?  Did you get referred to a GI right away?  Were you left hanging without answers for any significant length of time?  

I had been seeing an internal medicine guy.  My endocrinologist referred me to him about a year ago, they were friends, and I'd been having some significant health issues.  I wasn't able to eat more than once every two days which meant, with type 1 diabetes, the ambulance was coming for me on a regular basis.

I'd had some blood work.  The internal medicine guy had me tested for everything under the sun and then made a few other referrals:  Infectious disease, GI and immunologist.  My symptoms were crazy and ranged from terrible rashes, swollen lymph nodes on the back of my head, crushing chest pain...

About 2 weeks after the blood was done I saw the infectious disease doctor.  I walked into the office, she pulled up my info on the computer and said, "I don't know why you're here.  You have hep c."

She got up, opened the door and told me to go back to the referring physician.

So I waited two weeks for that appointment.  I was terrified.  I knew nothing about hep c.  Nothing.  

[wtbleep]

I was at the dentist getting my teeth cleaned when she dropped the tool and poked herself when she picked it up.  I was asked to get tested for HCV and HIV since there was blood to blood contact.  I was mailed a copy of the test results which were negative for HIV but showed antibodies for the HCV.  I did not know the significance of the results and a year later (Oct 2000) when I was about 4 mths pregnant with my second child I got a call at work from the CDC asking me to enroll in a vertical transmisson study.  I was floored by this and very upset.  After the dust settled I did enter the study and my daughter did test positive in the end.  My family doctor told me to wait for new drugs as the research/studies were progressing rapidly and I was relatively healthy.  In 2005 I had a biopsy 0/1 and bloodwork was still within normal ranges so the GI specialist said I didn't qualify for tx.  Now 5 years later with all sorts of sx and a F3 severe fibrosis rating I finally got into a clinical trial.  In the meantime my daughter who is 10 has been seen at the Children's Hospital where they said her liver was "fine" and wait for newer tx options to come in the future.  Her AST was 56 and ALT 57.  They won't do a biopsy yet but we have asked for a fibroscan in addition to bi-annual bloodwork and annual checkups.  I can't stand the waiting game but tx right now is not an option for her.  

[working dog]

about 15 years ago i was into lots of exercise...biking long distance 3 or 4 times a week...working hard and lots of other stuff...i would get infections on my legs and other sx so every once in a while would go to get it checked out...did my blood sugar thing i had diabetes...always came up normal...why they didn't do a blood test i don't know...i use to give blood but since living way up north hadn't for some time...at about 42 i started having a drink once in a while ...over about 8 years that turned into 2 or 3 drinks a night...not as bad as some but too much...so i just stopped..well that threw me into alcohol withdrawals...i really didn't even know what was happening....that led to blood tests and finding out i had hep....we seem to be so uneducated about this...i've been through so much adjusting my life to be able to tx...feels great to be getting it done even though i'm having lots of sx.....billy

[researchmonkey326]

Finding out for me was a bit of a disaster as well.  After slightly elevated enzymes for years, my GP ran the Hep C test.  The office manager called me late on a Friday afternoon to let me know I needed to make an appt. to get my results.  I was headed out of town because my dad was in Intensive Care with varices so I pretty much forced it out of her.  She said I had both Hep B and Hep C and that combo was dire (ended up I had just the Hep C).  They were totally uneducated about Hep C and could just tell me "It's bad".  Sheesh.  I did get some satisfaction out of knowing that the office manager lost her job because of handling the whole thing unprofessionally.  Oh well, not my fault.  I immediately fired the doctor and started seeing a research virologist at an Infectious disease Clinic.  That was in 2007.  Tomorrow is my final day of treatment!

[suezeeque]

I live in Ontario, Canada and we aren't charged for anything.  ;)  Well, directly, anyway.  

My situation was quite dire at the time.  He didn't send me to the infectious disease doctor to give me the test results.  That was the problem!  All these doctors were in the same hospital and she just happened to be the first doctor I saw after the blood was back.  She just blurted it out and hoofed me out of her office.

The results were on the computer for all to see.  

I don't fault the internal medicine guy in the least.  He made a bunch of referrals to try to figure out what was wrong with me.  I lost 30 lbs very quickly and not being able to eat when you have an insulin pump strapped to you is a wee bit dangerous.  That was the reason for all the referrals.

[curiouslady1]

I was diagnosed in 1992 with non A non B (the former name for hepc) by a PCP (internal medicine) who sent me to a gastro/hepatologist for further work up.  I don't understand why your PCP sent you to so many people when he could read the blood tests for himself. Acute infections can bring on appetite loss and other dramatic symptoms but that is not usually associated with Hep C chronic I don't think.  Seems like the one doc was annoyed with the other doc and took it out on you!  Hope she didn't charge you.  

[hondapatches]

The doctor found mine by accident, She was my regular Dr. She refered me to a GI doctor. I have been through three of them. The first one was a man, I didn't like him he just brushed me off. The second on was a woman, she put me on treatment but did not monitor me very closely at all. So I didn''t think much of her either.  The one I have now is very good, he does research with hep c. He knows all about everything new that comes out. He is good and his nurse Ann is very very kind and helpful. But yeah you gotta be freaking out, I know I was when I was first diagonsed in 2000. They were looking for something about my overies and then called me and told me about the hep c. I knew that my girlfriend had it and had went through really really rough treatments. God I know I didn't want this desease. But we cope get treatment and go on. I just leave it all up to God, and the new meds.  

[summer7799]

I went to give blood for the first time ever back in may of this year. Week later they called and said my blood was positive for hep c and to go see my Dr to follow up. Well I didn't have a Dr and no health insurance. Luckily it was open enrollment at work for health insurance so I signed up. I never thought I could afford it before, but I don't have a choice now. So I found a primary care Dr, she sent me for a blood test to confirm the hep c. After that was confirmed she sent me to a gastroenterologist. He sent me for a ultrasound of my liver and the tests to find viral load and genotype. Viral load was 6.2 million. And they can't find my genotype. Ran the test twice, and no genotype. It's now Sept and I am stil waiting. Now the gastroenterologist is sending me to a hepatologist at a hospital in Baltimore. He's hoping they will know what to do with me. More and more waiting....

[hrsepwrguy]

I was dianosed by a NP I was seeing for fatigue and headaches, she was all over it, she had me diagnosed, PCR ran and genotype within 3 weeks, then she refered me to a GI, but before she sent me she sat me down and told me exactly what procedures I needed to follow from there.(get biopsy, see what it shows and then make a decision of whether to treat or not). I am so glad that she did that, because the first GI I went to tried to scare me away from treatment, told me my liver was fine and got mad when I requested a biopsy anyway. He set it up and I went for the procedure, got the results back and dropped him and found a GI as was comfortable with. I am being treated thru a study at UC and he is actively involved with my treatment thru them.