Called Hepatology at U Miami

[sunqueen]

I hit my tolerance point. I posted that I had started treatment on July 4th recently. Was having some concerns regarding my ability to keep up my work pace. Before leaving the country, my GI said I was going to be fine. I was worried about the 60 hour on-call shift that I would have to do the weekend of my 3rd shot. I already work more than 40/wk out in the field on the weeks before and after my on-call weekend.  

I saw my PCP that week. He did not want to do documentation for my job because he said it was the responsibility of the person treating my HCV. I ended up not being able to urinate after my second shot and had a flaming UTI. That cleared up. My GI's office had to covering doctor see me. I went in with a list of side effects that are hammering me. He basically tossed it down and asked what he was supposed to do about it. I was worried about how much Tylenol I could take between the joint pain and a migraine that wouldn't quit. He said he's a GI and that my PCP should refer me to a neurologist. I also asked about any special diet or exercise and he basically said they should be the least of my worries right now.

I was peeved when I left. NO ONE in that office ever bothered to tell me that there was a negative relationship between body weight and positive tx outcome. I read about it here after following threads of one weight-obsessed individual with curious interest. I could stand to loose about 60 pounds. I also asked what would happen if my blood levels tanked and how we would handle rescue medications. Was informed that they do not use them. They reduce tx or discontinue it.

I want this thing out of my body. I'll put up with anything they want to put me through but doing next to nothing is just not acceptable to me. Work adjusted my schedule a little. I'm still operating at normal productivity levels with the exception of not having to take call for the time being.

My two week VL was 326,000 IU/ML. I'm scheduled for my four week labs this Thursday. The nurse at the GI's office said they're interested in my week 12 labs and that if I was UND then, I would have a 99% chance at SVR. That just didn't sound right to me. I'm GT 3 / S2 / G2.

I called UM/Miller School of Medicine/Hepatology today and got an appointment to see a Dr. there on Aug 12th. They just had a cancellation. It was my lucky day. I'm not sure what to do at this point? My regular GI won't be back in the country until Aug 11. I see my PCP on Wednesday because he wants to check my urine again. It's hard to drink a gallon of water a day when you can't let it out. I plan to tell him that I'm underwhelmed by my HCV tx and care. Not sure if I should let my GI's office know, or wait until I see the doc in Miami.

Yeah, I'm a little long-winded, albeit short of breath.

[jmjm530]

As to your labs, as a geno 3, don't know where the nurse came up with that number -- but I'd make sure you definitely get those four week labs. The blood should be drawn for the week 4 labs either the day before your fifth injection or the day of your fifth injection but before the injection. Also make sure you get a very sensitive viral load test. One good one is "Heptimax" by Quest Diagnostics that goes down to 5 IU/ml. If not available, ask the Nurse what is the sensitivity of the test they use. If it's more than 50 IU/ml, I'd ask for a test that is 50 IU/ml or less and preferably sensitive down to 10 or 5 IU/ml.

[jmjm530]

An unfortunate story all too familiar with many treating with GI's. Hopefully you will have better luck with the liver specialist at the new hospital and do make sure it's a liver specialist (hepatologist) that you will be seeing and not another GI.
.Can't advise on when you should tell your current GI but personally I'd wait until you made a decision to switch before telling your current doctor you're shopping around. Meanwhile, if you have a UTI, by all means get to a urologist as August 12th is a very long time to be holding that urine in!!!

[DragonSlayer45]

Sorry to hear about your ordeal. First of all, I would definitely look into a 2nd GI as I would not tolerate any doctor who's stance is we do not give rescue drugs we reduce or stop treatment. Most good doctors, including Dr. Dietrich who is on the Hepatitis C expect forum here, will tell you that you need to stay on treatment, not reduce or stop if you want to have success. They will give you rescue meds to help you stay the course before having to resort to lowering dosages.  I also would not be real happy if my PCP was so uncaring although chances are he does not understand hep C real well anyway, most PCP's don't. I also would not be real pleased if the covering doctor tossed my paper away that I wrote my sides down on. I think you are making a good call by going to U of Miami. Remember this is your body and your treatment if you are not happy with the current level of care you are getting then I would definitely change it. You are in charge! Good luck!

Also while they may say that being overweight can reduce success rates do not let that deter you because it does not mean you will not have success, just that they see increased rates with people who are closer to their ideal weight.