Serious Issues As To How My Tx Was Handled.

[Carlhcv]

I was diagnosed by my general practitioner in 9-2012 through routine blood work. I am genotype 1a with no symptoms. I have no insurance. The gastroenterologist to which I was referred ordered a full abdominal CT scan and additional blood work which I paid for. He then indicated that tx (interferon, ribavirin, victrelis) would cost in the neighborhood of $170,000. He offered no further assistance or advice. Through the internet I discovered that I could get the meds for free through a compassionate care program by Merck. Now the search for an affordable Dr. began. I found a local gastroenterologist who offered to treat me for $20 per visit. He let me get the blood work done directly through the lab so there was no mark-up there. The CBCs were only $15. My biggest expense were the VL test at +$500 each. Ok, good, tx was started 2-1-13. First red flags were no instruction on how to inject myself or that the first injection could make me very sick. This forum got me through that. Next problem, when I mentioned to his nurse that I had some skin rash I was ordered to stop all meds. I told her that the rash was not bad and I would continue meds against his advice until I could see him. He did not know that incevek, not victrelis, causes the dangerous skin rash. He saw me and I was good to continue tx. My viral load was way down at week 4 and almost und at week 8. Next problem; No VL test was ordered at week 12. Next problem; When my white blood cell count dropped I was told to skip two shots. I was not informed about Neupogen. I found out about that on this forum. By the time I applied and got approved for free Neupogen I had already skipped some shots and taken some reduced doses. I feel that this could be the reason why my VL count was back up at the week 24 test. Now I got a bill for $80 for every visit to this Dr. from his "employer", Oakland Medical Group. It appears that he made arrangements with me that he had no authority to make. Now I sit here out about $10,000, still with hep C, two loose dental bridges, a lot of hair gone and what's left is white and stands straight up so I cut it real short, my skin is red and blotchy and I look 10 years older. My energy is coming back and I'm slowly getting back to "normal" though. I am considering consulting an attorney. Malpractice suits are expensive and difficult to prove. I feel that the skipped interferon most likely sabotaged my tx. Any opinions on this? Thank you. Carl.

[Dee1956]

Dear Carl, to say I am sorry would be too little though I am so sorry.
It would almost appear as if the doctor or his nurse was not aware of how important the tx was nor how to tx it when you got in to trouble. That could be malpractice if they did not have the knowledge to tx you.  Of course I am not a lawyer so don't know your rights in the state you live in.  There are lawyers who will talk to you for free during a consultation and tell you if you have a case.  You can search for them on internet.
As far as the deal between you and the doctor, his company could eat the loss.  Did you mention to this company billing you that he had made this deal with you?
I am so very sorry. I wish I had an answer for you.
Take care
Dee

[dontworry_behappy1]

Call the billing agency and tell them the billing is incorrect.  This does and has happened to me.  

[HappyByChoice]

This sounds a lot like my first TX... I had a very incompetent dr!!  I had only three VLs...one before TX, one at 24 wks, and one three weeks post.  I was negative at 24 wks but it was back with a vengence at 3 wks post.  I was offered no instructions, no rescue meds, and no dose reductions.  I was forced to just endure.  My first reaction after relapsing was to go after the doctor, but I decided that my energy was better spent recovering and figuring out what to do next.  That was 10 years ago and there were no other options at the time... no such thing as a protease inhibitor!

There were a few cracks that I could very easily have fallen into this time around had it not been for the wonderful people on this forum!!  Love these people!!

Relapse is a real kick in the teeth!!  I remember very vividly telling the doctor, "NO!!",  "UH-UH!!",  "I DID NOT JUST WASTE A YEAR OF MY LIFE FOR NOTHING!!" and then crying all the way back to the office.  

I'm very sorry that you didn't get what you paid so dearly for!!  Take some time to regroup and then do what you have to do!!  We are all here to support you!

[Advocate1955]

Correct me if I'm wrong, but Carl didn't relapse, he had a viral breakthrough. This could potentially be important in terms of future treatment. Everything mentioned is a concern and indicates that this doc was not experienced in treating w Incivek and didn't monitor you closely or inform himself about protocol w Incivek. Whether to dose reduce or use meds like Neupogen or Procrit seems to vary quite a bit with triple tx. It seemed to be more the norm with previous txs, and dose reducing seems to be more the norm w triple tx. The biggest problem I see is not having a 12 week PCR. Without that, you won't really know if you became UND and then had a breakthrough, or if you never attained UND. Right? Regardless, we now know that you are a "difficult to treat" case. Did the doc's mismanagement of your tx cause you to fail treatment (whether you never attained SVR or had a breakthrough)? Based on my hubby's three failed treatments despite his doc doing everything according to protocol, I would venture to guess "no". Unfortunately there is a percentage of people for whom triple tx will not work. I'm not advocating for people to disregard protocol, I'm just opining that your strand of virus and your alleles are likely combines in such a way that triple tx was not going to work for you. Yes, it's devastating, and yes, that doc should be following protocol to improve people's chances of completing successful tx, especially since failed treatments inform future treatments. Does it add up to malpractice? Poor quality care, yes. I don't know about malpractice, but a good attorney could answer. Give it about 6 mo. Your hair will probably fill in, although it might be a different color/texture, your skin will probably improve, and try (I know it's easier said than done) to focus your energy on physical and mental recovery from this treatment. Focusing on negative feelings may slow down your body's recovery. I read in here one time, a long time ago, it doesn't pay to worry and stress about PCR results because in reality, the end result is already determined, we just don't know what it is until we get that lab result back. Carl, you did your best. The end result was probably already decided (by strain of virus and your genetics) way back at the beginning of treatment. But what can we do? We can only keep trying every reasonable good option when it becomes available. We were devastated w the news of hubby's breakthrough too. I was upset W the lab because his blood hemolyzed and I didn't know if it would invalidate the results, I was upset W the substitute NP because he made the decision about stopping tx while hepa and her NP were out of town. I was upset that he had to dose reduce for 5 days due to anemia. But for me, that was all just anger and frustration and denial: not wanting to believe that it didn't work. Hubby was smarter about it than me: he said, "if it's not working then why keep.taking it?" We all process feelings differently.

[Advocate1955]

Oops, pushed post before I was done... Not trying to excuse the doc, just saying, you are probably just in the group for whom it wasn't going to work. I can't recall your stage of liver damage, but if it were me, I would focus on recovery and getting insurance so you can find a good hepa to treat w next time, when a good option becomes available. You will want ins anyway even just for the routine imaging, colonoscopies, and endoscopies, that you may need, let alone any other things that may come up.

[Carlhcv]

I apologize for starting this thread and waiting so long to respond. Truth is that the weather has been great in Michigan and I'm starting to feel pretty good again and enjoying life! I'm trying to put this behind me for awhile. All of my side effects are improving. Some are gone, the skin and hair issues just seem to take a little longer. Hopefully the dentist can remove and re-cement my two loose bridges. I got the billing problem straightened out. I do think that the doctor made some errors but that I would never be able to prove malpractice in a lawsuit. I will not be pursuing that. You are all so wonderful and like a family to me. This is the only hep C forum/support that I have used once I found it. The doctor said that now I wait for new meds. I will be around but not so much while I recover and take a break from this whole hep C thing that turned my life upside down and consumed me for nearly a year!! Thank you everyone. I love you all. I wish you all the best. :)