PreTreatment Decisions

Hi all, I just got diagnosed HCV positive by my PCP. It took 3 days for me to get over the shock & accept responsibility for getting things going. My family Doctors office refrred me to a gastroent and my appontment isnt for 7 weeks! I have many symptoms and had elevated LFTs plus I suspect I am 18 years into this. I am usually very patient but this seems a little long to wait. Heres the problem, this all came about because I wanted to get my doctoring in for the vaunted 50th and I just got a job offer. The new job would require traveling 3 out of 4 weeks a month and of course the stress of OJT for the 1st 6 months.

Weird timing huh? I am thinking that I may want to stick with the old comfortable job that keeps me close to home during Peg/riba treatment which I bet is in my near future. But the new job is a chance of a lifetime, what I have been working for all along. However, I am starting to see things differently (lifes priorities) that so many here speak of, and its obvious that life health and spirit is more important than vocational fulfillment

Can I have my cake & eat it too? I am otherwise completely healthy

Thanks in advance - everyone ere seems really cool

[strator]

Welcome, though it still feels strange to say welcome to the hep c community, this is a great place for help. Also stinks that life's timing isn't always that great. It is good to hear that your being proactive about this. It's a very personal decision either way, and it sounds like you still have some info needed that could sway your decision, like liver damage if any and the stages and grades of it as well as your genotype. . Your gastro may not even suggest you treat immediately, but that also is something you need to have a strong hand in deciding. I'm not always real good at making decisions like that, because I can play the both sides of the fence too much. You'll need to look at all the pros and cons and talk to others here who may have treated while doing a lot of traveling. Talk to family and your dr, listen to what you feel in your heart as well.
Maybe you can talk to the gastro's office and see if they can move the appt up some.
When I was preparing for treatment I got an offer to illustrate a children's book. I was pretty hesitant cause they can be risky, but I really like the book and the author was so exuberant i just wanted to say yes so bad. I hadn't told her about the hep and did some preliminary sketches taht she seemed excited about. When I finally met her again and told her about my hep and plans to go on what could be a rough treatment, she seemed in shock. It turned out she and her husband had recently finished treatment and she knew how tough it could be. She suggested I wait and take care of my health first. I'm only a few months off the neds and not sure what will happen with the offer. For me i think that was the best decision, and I thank her for her understanding. Ironically I ended up doing construction all through treatment, very physical, but I also had a pretty flexible schedule. Maybe it will all work out for you, but one thing you have to remember is that no one can predict how you will react to the meds, and even after you start things can go up and down as far as how you feel.
Sounds like you have a pretty good attitude. That will help carry you through this either way. Others here may be around to help you more in the morning.
Be well,
Don
Don

[Magnum]

Did the doctor order a biopsy? Having been through this a lot, I found that since this is a very slow moving disease for the most part, you should have your doctor know just what shape your liver is really in. The only definite way to know is a biopsy, of which I've had three and it was no big deal.

If you can afford to wait, I would. That's my opinion, based on what I've been through retrospectively. If you are in the very first stages, I would wait. There is a very promising treatment we are all waiting for. The Vertex's VX-950 Protease Inhibitor. As your doctor if you can wait for that.

You may decide to do the treatment anyway. If you do, you should keep in mind that some people miraculously float through treatment with minimal side effects, while others experience a debilitating and torturous gaggle of side effects that are hard to ignore and may put you in bed. That's the extreme possibility, but a possibility none the less.

Again, I'm stating a possibility, not a fact of what you may go actually go through. At any rate, it all starts with your Gastroenterologist. He should be a knowledgeable doctor who is patient and truly concerned for your well being. The only way to know, is to feel comfortable in what he tells you needs to be done, and the approach he plans to use.

I would ask him the question of your job responsibility and possible adverse effects that would prevent you from doing it 100%. He should at that point, tell you some facts and present some various scenarios according to what his other patients have experienced.

Good luck to you and keep a positive attitude...

Magnum

[Steelerbot]

Thanks very much. Like I said, this forum is inhabitated by good folks. I appreciate everything & it helps to form a positive feeling I can work from

The problem I have is one of timing. I have to make a decision in a week. My first visit to the Gastro isnt for 7 weeks. I dont want to start badly with the gastro by appearing impatient like a scared HepC rookie who wants what he wants when he wants it. The secretary allready came off to me like yeah yeah thats what they all say when I asked for a move up. She did say she would put me on her cancellation list. She kept saying to me

"we dont even know you yet" To which I said "precisely, I want to get to know you now instead of 7 weeks from now, so I told her a bit of my dilemma. I also told her that I am feeling nauseous tired a lot itching and have had digestive problems for several years now and that did get her attention somewhat. It appears the handoff from PCP to gastro was vanilla. The gastro didnt have any of my labs or anything

I do see where Vertex has a promising protease inhibitor and so does Roche, I think Vertex with Schering Ploughs is further along.

Thanks folks. What to do what to do. I gotta get ahold of my primary I guess and ask him to grease the wheels for me. hate to do that. dont want special treatment

Thanks again. let me know if a rookie can do anything, Ill do it

Steeler fan forever

[orphanedhawk]

I don't know if this will help but I am impressed by how fast you are moving. When I was diagnosed in Sept. 2005, I was in Thailand and had no intention of returning to the U.S. until the following June. I was in mental paralysis for at least a week. I have cirrhosis and that limited my food intake, i.e. no salt. The only other change it made was my moving a bit slower and being more careful with eating off the street ( not so much in Thailand as in Burma). This is quite different than your situation but perhaps it will somehow help. Now over a year later I am looking at starting tx.   Good luck with whatever choice you make.

[hepcD]

We all start out with the shock of having hcv. You seem like a smart person with good common sense. The ultimate choice of going on treatment is your own.  I would suggest a biopsy sooner rather than later. If your doc tells you a biopsy isn't required . Find another doc that will do a biopsy. It is the only way you will truely know if your liver is damaged. If you have minimal damage you can wait for new drugs to treat. If you have a large amount of damage you will want to treat sooner rather than later. Don't over whelm yourself with this. Relax and enjoy life. Remember that over 5 millions americans have hcv and live a long health life and die of something other than hcv. This forum is a great place. There are alot of wise and knowledgeable people here to support you .

[jmjm530]

When it rains it pours, huh ;)

Tough decision because like other have said you may or may not have to treat. And even if you do decide to treat, you don't necessarily have to start right away. In my case, I put my treatment date off for over a year due to some social and business issues.

Unfortunatly, you have to take things one thing at a time. Did they genotype you yet? Genotype is a simple blood test that tells you what strain of Hep C you have. If you're a genotype 1, you should have a biopsy to tell you how much damage there is. In fact, even if you're a geno 2 or 3, you also might want to have a biopsy. How much damage you have will help determine whether you should treat sooner or later. As you may or not be aware, newer drugs are now in trial that could potentially result in shorter treatment times with fewer side effects and better results.

Sounds to me the only answer you will find in the next seven days is in your heart and soul. How important is this new job and how much do you want to gamble that you can wait awhile to start treatment. Chances are you will be able to wait but no guarantees.

That said, if you're a compulsive Type "A" with some resources and time on your hands, you might try and fast track the whole process:) That would mean getting on the phone Monday to your GP and getting your genotype test that day if you don't already have it. Then, calling up several hepatologists (liver specialists) and talking your way in for an expedited appointment due to your special job circumstances. A very good clinician might be able to
give you some indications as to liver damage although nothing definite.

You should also be aware that there are there or four doctors in the U.S. testing a device called Fibroscan for FDA approval. Two locations that I know of are Boston and New York. Fibroscan is like a non-evasive liver biopsy. I doubt if you could get an appointment within a week but nothing ventured, nothing gained.

Fibroscan aside, the ideal scenario would be if you could put off deciding on the job for another 3-4 weeks, see a liver specialist (hepatologist) and then get a biopsy if required. Even then you might have to push it a bit to get all done in time.

Good luck.

-- Jim

[FlGuy]

A lifetime opportunity and one which you have been working for. Don't let hcv take over your life. If the new job is what you've been pointed at for a long time, not taking it because of the possible treatment shadow is sort of giving in.  Although you don't have the full hcv scoop, you know enough about the opportunity.  Think of the regrets you might have 6 months from now.

[Steelerbot]

Thanks everyone. I am sure I am not the only one who has had to make this type of decision before having all requisite tests are done or even scheduled. I can see that genotype & biopsy are needed to make this determination so all I can do is what I can do one step at a time. Maybe I can ask for more time from my prospective employer. I will let you know how the doctors responded

[dog_lover]

Someone may have already suggested this but I cannot find my glasses so I am giving my new voice activation software some up time.  I don't think I would add the stress and uncertainty of a new job to the stew right now.  You have enough uncertainty in your life right now.
Peace
Dog_Lover

[sfbaygirl]

Hep C seems to have a lot of waiting involved. IT especially drives you nutz before tx. I agree with Flguy, you should take the job of your dreams. You may not even need tx. Perhaps you can ask your PCP or GI for a lab slip for a CT scan or ultrasound to see what stage of damage you have. The PCP can usually do the ultrasound slip with out issue, especially if insurance is involved. If NOT then tell him you need to know your stage of damage and can you pay for the CT scan. Perhaps he will do it.