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Medical Forum / Diseases and Disorders / Hepatitis / December 2007Offshore work and treatment
Hi to everyone, and the regular posters. I hope to become active in the NG, as it is not only informative, but entertaining too! Ok, Here's my situation. I am geno 1A, most likely contracted in 1993 and diagnosed in 1998. I have not started treatments due to my job. I work offshore, on a six week on, six week off rotation. During my six weeks at sea, there is absolutely no chance to go ashore, unless it's a medevac. My work schedule on the ship is 12 hours on, 12 hours off, seven days a week for the six week swing. The good news, when I'm on shore, I'm off work 24-7 and can catch up on everything that's been neglected for the last 6 weeks! Since a lot of you are intimately familiar with treatment, side effects, how it can affect your mood (the riba rage I've read so much about), and the rest I'd like to ask for advice. Are the physical tolls something I could work with on the ship? How frequently do you need monitoring/testing? I'd like to start treatment, but my job has some pretty different requirements than most. I'll look forward to any replies! Thanks to all, Dirk >Hi to everyone, and the regular posters. I hope to become active in >the NG, as it is not only informative, but entertaining too! [quoted text clipped - 18 lines] >Thanks to all, >Dirk Greetings, Dirk. And welcome to our cave ;-) As you're likely aware, g1s require at least 48 weeks of treatment to have a good shot at success. This lengthy duration tends to bring out the worst of the combo-induced side-effects - of which the so-called "riba rage" is one of least significant. While some people get through that duration without major incident(s), there are others that get hammered pretty thoroughly, and at one time or another - or even often - need to get to the doc's office to deal with side-effects. Anemia is the obvious concern wrt carrying out any physically oriented vocation. Again, some folks get through without significant anemia, but others (such as myself) hit rock bottom with roughly half the hemoglobin as a healthy soul. I can assure you, rough necking with HGB at 8g/dl is simply not feasible. If you want to simulate that experience, hold your breath for 30 seconds out of every minute while you're working on the rig. If you think you can handle *that*, you're good to go ;-) Thrombocytopenia (platelet suppression) poses a significant risk should you be injured on the job, as does Neutropenia (depressed WBC count) should you become exposed to infection. For now, I would recommend you get a full workup to understand what the state of your liver is at this time. Liver Function Tests (aka LFTs) and a full CBC, for a start, and if the LFTs are significantly elevated, an ultrasound and probably a liver biopsy are in order. If the level of liver injury is modest, you could consider putting off treatment for a couple of years while drugs in the pipeline reach maturity, which will raise the odds of success for g1s (which, at this point, are somewhat less that 50%). Otoh, if you have significant liver damage, you might want to consider taking a year off to do the treatment now. Bottom line, and rationally speaking, being out-of-touch with the medical world for extended periods during treatment is not something I could recommend - particularly for g1s. It's too much of a crap-shoot as to whether you might experience significant side effects to take that chance... Cheers - and good luck. /greyhackles Thanks for the info, Greyhackles! Fortunately for me, I'm not on a rig but a navigator on a seismic survey ship. Sometimes it can be pretty physically demanding, but most of the time it's desk work. The reason I've held off on treatment so far is mostly because of the possibility of new treatments becoming available. I'm awaiting results on a liver function test done last Friday, and I had a biopsy done in 2002, PCR the whole workup prior to starting treatment (or not, in my case). At that time, the damage wasn't pronounced. I watch what I eat, I don't drink alcohol (anymore, since 1993) and every 2 years I get a physical, ALT and AST are on the tests. They have both been higher than the norm, which is expected but not through the roof. I'm anxious to see the values on the recent test. Thanks again for the reply, and the warm welcome! >>Hi to everyone, and the regular posters. I hope to become active in >>the NG, as it is not only informative, but entertaining too! [quoted text clipped - 60 lines] > >/greyhackles > Hi to everyone, and the regular posters. I hope to become active in > the NG, as it is not only informative, but entertaining too! [quoted text clipped - 18 lines] > Thanks to all, > Dirk IF Can you be taught to draw your own blood, IF you can get those blood samples to a lab where they can be analyzed WHILE you are working, IF you can talk regularly via phone or email with a Dr., and IF you can bring the various medications with you to deal with the most common sides (EPO, Neupogen, pain meds, sleeping meds)---or have them sent to you...I think it would be tough...but doable. You would need to find a really good, smart, flexible and accommodating Dr., methinks. The bad news with tx is this---many people experience sides which require additional meds. Because my tx caused anemia and neutropenia, I'm on Procrit and Neupogen. Because Neupogen caused severe bone pain and insomnia, I'm also on Vicodin and Restoril. The good news is---most of these sides are predictable. >> Hi to everyone, and the regular posters. I hope to become active in >> the NG, as it is not only informative, but entertaining too! [quoted text clipped - 35 lines] > >The good news is---most of these sides are predictable. Drawing my own blod wouldn't be a problem, but getting the samples off the ship would be. From what I've read so far, it seems like my best bet is to wait for new drugs to make it past the trials. If I can get to a point financially where I could take a year off, then I'd try the current pegylated interferon-ribavarin route, but I'm convinced it's completely incompatible with working on the ship! I'm also curious how long it takes to find out if I'm in the non-responsive group once treatment is began? >>> Hi to everyone, and the regular posters. I hope to become active in >>> the NG, as it is not only informative, but entertaining too! [quoted text clipped - 44 lines] > long it takes to find out if I'm in the non-responsive group once > treatment is began? Well, if you're looking to rationalize delaying treatment, the job is sufficient for that. If money's more important than your health, rock on. And good luck to you. >>>> Hi to everyone, and the regular posters. I hope to become active in >>>> the NG, as it is not only informative, but entertaining too! [quoted text clipped - 48 lines] >sufficient for that. If money's more important than your health, rock on. >And good luck to you. I don't enjoy editing folks here, but that's way too harsh, WS. We know precious little about this person, any dependents or dependencies, to leap to the conclusion that he is either in denial or looking to hide from his illness. Don't take this as a wrist slap, but as a plea for a bit less judgment and a bit more compassion. It is the season for the latter, after all... Cheers /greyhackles >>> On Sun, 2 Dec 2007 22:18:48 -0800 (PST), TX-012 >>> <withbacon@aol.com> [quoted text clipped - 101 lines] > > /greyhackles Hi Grey Thanks for your response -- I felt the same. I had HepC for at least 30 years before they found out I had it, and my liver damage was not that bad (stage 2). I understand what Spidey is saying, but I think as long as Dirk discusses this with a good doctor and makes some educated decisions, he'll do fine. There is always the chance that he won't be one of those who respond so harshly to TX, and maybe his doc would be willing to make any meds available to him that he might need on down the road.... You just never know what the possibilities are until you research them and find out what your doc is willing to do to work with you (and 6 weeks between dr appts is not that unreasonable -- I saw my doc once a month or so, sometimes longer between appts depending what was going on) Is there a doctor on board who can supervise the tx? I think the younger one is, the easier the treatments are too, so Dirk just might be able to pull it off and work through it all. "Riba Rage" can usually be controlled with a good anti depressant, and xanax is wonderful for anxiety AND sleep problems. And so on :) Dirk, find and talk to a good doctor, ok? Let us know what the doc has to say Sara >>>> On Sun, 2 Dec 2007 22:18:48 -0800 (PST), TX-012 >>>> <withbacon@aol.com> [quoted text clipped - 131 lines] > > Sara Forgot to say the main thing I meant to say, d'oh. Maybe, just maybe, the doctor will say it's fine to wait a few years before treating. 14 years really isn't that long a time to live with HepC (compared to my 30 yrs for instance!) and if Dirk is basically healthy with little or no real damage done to his liver yet, he might be ok waiting. S >>>>> Hi to everyone, and the regular posters. I hope to become active in >>>>> the NG, as it is not only informative, but entertaining too! [quoted text clipped - 58 lines] > a > bit more compassion. It is the season for the latter, after all... No offense taken, Grey; I have too much respect for your knowledge and opinions for that. Perhaps you're right, and perhaps I read between the lines where I shouldn't have, and perhaps I'm over-reacting because I'm watching a friend die of liver failure caused by hepatitis c because she waited too long. Spidey >No offense taken, Grey; I have too much respect for your knowledge and >opinions for that. [quoted text clipped - 3 lines] > >Spidey Thanks, WS. Your heart is in the right place... Cheers /greyhackles >>>> Hi to everyone, and the regular posters. I hope to become active in >>>> the NG, as it is not only informative, but entertaining too! [quoted text clipped - 48 lines] >sufficient for that. If money's more important than your health, rock on. >And good luck to you. I've read the replies after this one, and thanks to all for your input. WS, I'm not trying to rationalize delaying treatment, I'm trying to see if it's worth putting my family through hell for a year by taking the sole breadwinner out of the mix for a debilitating treatment. If it works, and I'm cured, "rock on", as you say... if not then two years really suck for everyone, for nothing. My health is more important to me than money, but my family's welfare is actually more important to me than my health. Still, not an easy choice to make. And no mail ship, no any kind of ship except fuel and provisions on a very irregular basis. While I'm out, we're towing a hydrophone array that is 8km long by 1.2km wide. No one can get near us, and it takes a week to get it back out if we have to pull it in for any reason, hence port calls very seldom. Sara, I have talked to two doc's about treatment, and being offshore and neither of them recommend it, but they both urge starting treatment asap. I am pretty healthy aside from the hep-C, and I baby my liver as much as possible (no alcohol, as little dietary fat as possible, no oily or greasy foods). Soon we'll move from podunk NW Florida to Toronto, which will increase my wife's earning power immensely, thereby increasing my likelihood of taking time off. I do realize it won't go away or get better over time! Greyhackles, I like your idea about the interval of testing.. I'd still like to have at least a trip off to avoid any surprises in weeks seven through twelve! Suds, Guy, CJ and TX-012, I feel for you guys and your stories just underscore the magnitude of deciding to go for it regarding treatment. I'll definitely keep your experience in mind and you've convinced me that it's not until I CAN take time off, at least for the initial 18weeks. One thing I can say is that all of your posts have helped me decide that it's not IF I start treatment, but WHEN. Thanks to everyone! >One thing I can say is that all of your posts have helped me decide >that it's not IF I start treatment, but WHEN. Thanks to everyone! Treatment is a hurdle for most of us I think. In general it requires seeing a doctor every month and more frequently sometimes. One thing I hope you'll understand is that these Liver Funtion Tests aren't of much use in assessing liver damage. Maybe a Fibrosure type test would be of some benefit. That biopsy is a bit old. I do understand the difficulties sometimes and hope your liver is holding up well. Don Fyi, the earlier you undergo treatment, the better your chances of success. If you contracted hep c in 93, you're getting pretty close to that 20 year mark where liver damage is generally severe. Alson be aware that it takes years for new drugs to be accessible to the patient, and that there is nothing on the horizon that's not in the category of adjunct to current peg-ifn & ribavirin. It would be great if, say five years down the road, there's an easy magic bullet tx on the market, but that's highly unlikely. Dirk: Listen to greyhackles. And just to underscore the warning about Anemia. It's not something you can rough out. How'd you like to be up high with big rollers, and you have to stop and rest because, if you didn't you will fall down. You're talking about not enough oxygen to your WHOLE body. I'm 6 weeks into Tx with geno 1b, and am really f.cked up from positional vertigo, aching muscles after barely exerting myself, and short term memory loss (as in forgetting what I crossed the room to get), and balance problems, to name only a few of the sides. I've been on rough water, but nothing like an ocean, and I strongly suggest that you not temp fate. Stay ashore while taking Tx. I am working with Dr. on best way to treat the sides. What you are contemplating is a good way to get dead. Stick around especially if you have a sense of humor. Suds >Drawing my own blod wouldn't be a problem, but getting the samples off >the ship would be. From what I've read so far, it seems like my best [quoted text clipped - 4 lines] >long it takes to find out if I'm in the non-responsive group once >treatment is began? I think your assessment of the compatibility of treatment and life on the high seas is the most likely to be correct under practical circumstances... As for determining "responsiveness" to treatment, frequent and early testing are key. A viral load test performed at the end of 4 weeks would shed light on whether you were an "early responder" - or even a "super-responder"; at 12 weeks would determine if you are a "responder"; at 24 weeks would determine if you are either a "non-responder" or a "slow responder". While VL testing at 4 weeks is not currently the standard, it is something I recommend (recognizing, obviously, that counts for pretty much nothing ;-) but if you insist up-front on having VL tests performed at the 4/12/24/48 week points, and using one of the more sensitive tests (down in the 5 or 10 IU/ml range) you'd be doing about all that can be done to track your progress. If you cannot get the doctor to agree to that plan, I'd recommend finding another doctor... With respect to drugs in the pipeline, the essence of Waterspider's response to that question is correct, there's nothing out there that replaces the combo drugs yet. The best candidates are adjuvants (a better word than adjunct in this case, imo) to the combo drugs, and which, at this point, we're all hoping will significantly enhance treatment success without adding significantly to the list of potential side-effects - which we already have in spades ;-) Cheers /greyhackles > >> Hi to everyone, and the regular posters. I hope to become active in > >> the NG, as it is not only informative, but entertaining too! [quoted text clipped - 44 lines] > long it takes to find out if I'm in the non-responsive group once > treatment is began? So there's no mail ship that comes to visit you? Okay, in that case, You could: 1) Tell your Dr. everything you've told us 2) Start treatment as soon as you arrive on dry land 3) Get weekly blood tests on days 7, 14, 21, and 28 after you start tx to seek how you feel, and how your red blood cells and white blood cells respond, and then 4) If you don't have any problems & feel okay (lucky you!), and your doctor is cool with it, you could continue treatment, getting blood tests every 6 weeks... > Hi to everyone, and the regular posters. I hope to become active in > the NG, as it is not only informative, but entertaining too! [quoted text clipped - 18 lines] > Thanks to all, > Dirk Hi Dirk, I am into my 46th week of 48. I do tech support for a living and there are days I can barely even type let alone drag my a.s in to work. I can't even imagine what it would be like if I had a job where I have to exert myself physically. Luckily I had 160 hours vacation time I could use as of Sept 1 and I am on intermittent FMLA ( Family Medical Leave of Absence ). You might want to look in to FMLA or Short Term Disability. Make no mistake about it, this sh.t is going to kick your a.s. My suggestion is prepare for the worst and hope for the best. Good Luck Bro Guy Dirk, A little cold water: - Don't even think about doing the combo treatment while you're out on your job. - Your treatment may take a year (48 weeks) and it may take another year or more to recover from it all. That is not unusual. Recovery includes brain fog which may result in some rocky landings. It also could include psychiatric issues (10%) - Unless you have multiple redundancies in ship's crew ratings, if I was the chief of the boat, you would not be allowed on it while treating. - At best, you would be a net drain on the rest of the crew and functioning of the ship. You don't want that, do you? - Wait for the earliest you could take this poison ashore. I had to retire early from operating freight trains in order to take it, and it was a good thing I did. Not that it helped sincerely cactus jammies >> Hi to everyone, and the regular posters. I hope to become active in >> the NG, as it is not only informative, but entertaining too! [quoted text clipped - 35 lines] > > Guy |
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