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Medical Forum / Diseases and Disorders / Hepatitis / May 2005Week 43/48
Hi All, Somehow I have made t to week 43 and have just a few weeks to go before I'm done with TX. It has indeed been an interesting ride, but what concerns me is not so much getting my SVR,(almost a sure bet), but not having a legitimate excuse for my behavior :-). I will no longer have TX to blame for me being me. I know that out of the group of seven people that started TX on Aug 3rd, only two are still with the program, and I'm one of them. I guess thats a good thing. The others have all had to drop out for one reason or another. One had a serious accident that precluded further treatment . Two were so affected by the sides so much so that they had to discontinue, and I'm not quite sure about the others. I guess that says something about my being a stubborn hard headed Italian. It will be interesting seeing how things may change regarding my energy level, I hear that should improve,(I hope). I'm quite anemic now. In Feb. 2004 Readers Digest, there is an interesting article called the 10 diseases that doctors miss most, and guess which one is number one. Yup, you guessed it HEP C. There is an example there that parallels mine, this gal had the virus for 19 years before she was diagnosed with HCV. She had been suffering from exhaustion, and chalked it up to just getting older(60 yrs). I remember the last 2 or 3 years before I lost my job,(reorganization), that I was also exhausted, and sometimes fell asleep at my desk, and had a hell of a time making it through the workday. I also thought it was attributed to getting older,( I'm 53 y/o now). Surprise, surprise. My primary care physician ran a blood test, and it came up positive for HCV. At that time,1999, I was still somewhat in denial, and refused TX. I was a fool. I had read about some of the worst case scenarios, and wanted no part of that. Last year, my VA doc here in Honolulu convinced me that It would indeed extend my life and I could think of no reason to refuse Tx, and so here I am, about to finish. The last two viral load tests could not detect any virus in my blood. Yay. Now if I could only lose some more weight, I may be able to get my hip replaced, and get off the pain killing drugs, and go back to work,(doing what I'm not sure yet), but at least it's something to look foreward to. It's important to me to have a goal. It does kinda suck having S.S. disability insurance as my sole source of income. Maybe I should take advantage of some of those get rich quick schemes that keep coming my way via the Internet. Hah. The end of this week I get to see my daughter graduate from H.S. here in Honolulu, and I'm so excited about that. I am amazed at the number of folks who have been newly diagnosed, and are either in TX, or thinking about it. I truly hope that we all beat this damned virus, and get on with our lives. I'm trying like hell to do just that. T.T.F.N. and thanks for the support. John in Honolulu, AKA Red Dwarf. Way to go, John! You sound like a brand new person. Yes, there is light at the end of the tunnel. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum Congrats! 5 weeks...a walk in the park! ;-) You're quite anemic? Are you on EPO? I was hoping that after being on EPO for a while (I had shot #1 yesterday with a hemoglobin of 112 [from 147]), that I'd no longer be anemic. Too optimistic? Congrats again, David > Way to go, John! You sound like a brand new person. Yes, there is > light at the end of the tunnel. [quoted text clipped - 3 lines] > > http://community.webtv.net/elmoemerson/TheFamilyAlbum What kind of a pharmacare plan are you on David? Some third party supplementary? Out in BC, they still reduce the dosage of your ribavirin before they would ever consider procrit (EPO) for anaemia. And Nuepogen? Whoa, you must be really sick to have your doc prescribe you that stuff. $12,000 for seven days, I think it is. Its not an option for me, in any case because I have fairly normal white cell count. IFN daily doses to keep fibrosis at bay after failed combo tx is not an option yet, unless you have a cirrhotic liver, then you can get into physicians studies and the like. I have also been told that INFERGEN is not an option for my case, either. I am wondering if its your plan or supplementary or mine that seems a bit out of whack. You don't even want to know about my supplementary Blue Cross to reclaim the deductible on the BC pharmacare. It doesn't even list Pegetron treatment but out in BC they say everyone lists it. Hmmm go figure. Also, I have not cleared since the last test I got at xmas which showed a more than 2 log drop at week 12. I was refused the 24 week PCR "...because my case seemed to be headed in the right direction..". I wonder if that is just an educated and experienced guess on the part of my spec doc. Otherwise it would be torture and I would be contacting Amnesty International about it next message. Please advise if you can and thanks cactusjammies BC ////////////////////////////////////////////////////////// > Congrats! 5 weeks...a walk in the park! ;-) > [quoted text clipped - 13 lines] >> >> http://community.webtv.net/elmoemerson/TheFamilyAlbum David, sorry I misposted and this messge wound up on the wrong string. If John (Red Dwarf) is reading this, sorry I messed up your string, congrats on the improvements and sunny days ahead. Week 35 of 48 for me, did not clear but got more than two log drop at week 12, cruising ever since. Ha! about rashes 8-) scratch scratch, bathe in Gold bond gluten glop, use cortisone and some other topical steroid on any open lesions as well as polysporin to keep any hint of bacterial skin infection at bay at larger open wounds, like where my watch ate my wrist. I have a cross between a leather welt and rash on most of my injection area. So managing that in order to keep open an injection site has become a chore. Keep your fingernails trimed the rash is supposed to slough off the dead layers of epidermic stuff. It does in my case. My skin is compromised because of the continued assault of Psoriasis which has thankfully subsided for the duration. But anyways great news, guy! other stuff to do with making it this far:. My lips have been chapped for six months Mary Ann. But at least I can breathe though my nose today after all the gasping trying to clear my lungs last night. Thank goodness I realized I was enough of a garretted monk to grow a wild man beard. boooo----hhhhhoooooo! I look like I feel now. ha ha ha ha But no more spread of the (I call it) radiation burn to the beard area, so gentle washing and no preparations seems best to keep that at bay. Certainly not astringent or de-oiling cleansing, not on my old without a trace, (face) anyways... I find pillow damage the worst because of the routine posture which is face down 3/4 prone, so all the chafing effects happen that way, I think. cactus jammies ////////////////////////////////////////////////////////// > What kind of a pharmacare plan are you on David? Some third party > supplementary? Out in BC, they still reduce the dosage of your ribavirin > before they would ever consider procrit (EPO) for anaemia. And Nuepogen? > Whoa, you must be really sick to have your doc prescribe you that stuff. etc > What kind of a pharmacare plan are you on David? Some third party > supplementary? Out in BC, they still reduce the dosage of your ribavirin [quoted text clipped - 13 lines] > more than 2 log drop at week 12. I was refused the 24 week PCR "...because > my case seemed to be headed in the right direction..". Hey cj. Last week at my doc visit I asked about the 24 weeks test(coming up soon) and he told me I didn't need it because I was undetectable at 12 weeks.Protocol. I told him that I've heard tale of folks who are clear at week 12, skip the 24 weeks, then at 48 the virus is still there. He fed me a line about it being an expensive test...I became agitated and he said well, if it will give you peace of mind we could do it. Take care, Mary Ann > I wonder if that is > just an educated and experienced guess on the part of my spec doc. [quoted text clipped - 23 lines] > >> > >> http://community.webtv.net/elmoemerson/TheFamilyAlbum >> What kind of a pharmacare plan are you on David? Some third party >> supplementary? Out in BC, they still reduce the dosage of your ribavirin [quoted text clipped - 24 lines] >Take care, >Mary Ann Yeah, baybeee! Kickin' a.s and taking charge! I love it! :-) Cheers /greyhackles Mary Ann, it's very uncommon for someone who was clear of virus at 12 weeks to relapse while still taking the combo drugs. It's also uncommon for someone who had a 2-log drop at week 12 to relapse before end of tx. It's not all that important to get the 24 week test, in your case, other than to get you some piece of mind (very important). On the other hand, if I wasn't clear by week 12, I'd want to see some week 24 test results. Elmo ///////// Hey cj. Last week at my doc visit I asked about the 24 weeks test(coming up soon) and he told me I didn't need it because I was undetectable at 12 weeks.Protocol. I told him that I've heard tale of folks who are clear at week 12, skip the 24 weeks, then at 48 the virus is still there. He fed me a line about it being an expensive test...I became agitated and he said well, if it will give you peace of mind we could do it. Take care, Mary Ann I wonder if that is just an educated and experienced guess on the part of my spec doc. Otherwise it would be torture and I would be contacting Amnesty International about it next message. Please advise if you can and thanks cactusjammies BC ////////////////////////////////////////////// "Canadave" <yeahright@noway.com> wrote in message news:FL-dnXQHU7oFcAnfRVn-tA@rogers.com... Congrats! 5 weeks...a walk in the park! ;-) You're quite anemic? Are you on EPO? I was hoping that after being on EPO for a while (I had shot #1 yesterday with a hemoglobin of 112 [from 147]), that I'd no longer be anemic. Too optimistic? Congrats again, David <elmoemerson@webtv.net> wrote in message news:7273-42947202-14@storefull-3254.bay.webtv.net... Way to go, John! You sound like a brand new person. Yes, there is light at the end of the tunnel. Elmo http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum http://community.webtv.net/elmoemerson/DocElmosHepFile http://community.webtv.net/elmoemerson/TheFamilyAlbum John, I'm a couple of weeks ahead of you. I'll be done 3 weeks from tomorrow. Glad to here your doing good. Congrats to you and your daughter :) Life is good Mark > Hi All, > Somehow I have made t to week 43 and have just a few weeks to go before [quoted text clipped - 42 lines] > that. T.T.F.N. and thanks for the support. > John in Honolulu, AKA Red Dwarf. > John, > Life is good > Mark I'm glad someone else thinks it's good! Here I am, widowed, sick as a dog, and with a questionable future, but life IS good. I've got too much to celebrate to waste time crying. Let's hear it for life! Thanks Mark. Darned nice of you. John > John, > I'm a couple of weeks ahead of you. I'll be done 3 weeks from tomorrow. [quoted text clipped - 48 lines] >> that. T.T.F.N. and thanks for the support. >> John in Honolulu, AKA Red Dwarf. > Somehow I have made t to week 43 and have just a few weeks to go before I'm > done with TX. It has indeed been an interesting ride, but what concerns me > is not so much getting my SVR,(almost a sure bet), but not having a > legitimate excuse for my behavior :-). I will no longer have TX to blame for > me being me. John, good to hear from you! I know that I had all sorts of plans for everything for when I finished tx and I had a huge burst of energy right after I quit but now, six months later, I feel like I'm finally getting back to normal. So if you can, don't pressure yourself too much to be all OK right away cause you probably won't be. Gordo Well I appreciate the thought Gordo. I guess I wasn't expecting miracles, but any improvement is a good thing. :-) John >> Somehow I have made t to week 43 and have just a few weeks to go before >> I'm [quoted text clipped - 12 lines] > > Gordo The difference between the day I took my last dose of Riba and a week later was like night and day. You should get a LOT of improvement quickly. It's just that I realized months later that even though I felt a lot better, mentally I was still sort of screwed up. > Well I appreciate the thought Gordo. I guess I wasn't expecting miracles, > but any improvement is a good thing. :-) [quoted text clipped - 17 lines] > > > > Gordo Wow! I remember when you first came into the group. You don't even sound like the same guy. Way to go!!!! > Hi All, > Somehow I have made t to week 43 and have just a few weeks to go before [quoted text clipped - 42 lines] > that. T.T.F.N. and thanks for the support. > John in Honolulu, AKA Red Dwarf. I assure I am the same schnook, just with a slightly improved attitude. Also, perhaps I'm not quite so lonely. It is nice to know that I can weather some difficult times. I remember a corny saying that goes,"what doesn't kill makes you stronger". Thanks. John > Wow! I remember when you first came into the group. You don't even sound > like the same guy. Way to go!!!! [quoted text clipped - 45 lines] >> that. T.T.F.N. and thanks for the support. >> John in Honolulu, AKA Red Dwarf. Conga-rats John....light at the end of the tunnel. I didn't have to take the big bus...got to do the shorter version...but I still remember how exciting it got towards the end. Actually started looking forward to the shot just so it would be one less to go. Then you have that post tx euphoria where you feel so much better you think you can do anything...then reality sets in and you realize you're healthier...happier... but still human <g>. I'm really happy for you and glad that you were able to tough it out. AG > Hi All, > Somehow I have made t to week 43 and have just a few weeks to go before I'm [quoted text clipped - 41 lines] > that. T.T.F.N. and thanks for the support. > John in Honolulu, AKA Red Dwarf. Hi AG, yes naturally if there a choice of contracting one that is easily gotten rid of, and one that is more difficult, of course I would get the more difficult version. Must be some weird kind of Karma. The story of my life,:-) John > Conga-rats John....light at the end of the tunnel. I didn't have > to take the big bus...got to do the shorter version...but I still [quoted text clipped - 76 lines] >> that. T.T.F.N. and thanks for the support. >> John in Honolulu, AKA Red Dwarf. > Hi AG, yes naturally if there a choice of contracting one that is easily > gotten rid of, and one that is more difficult, of course I would get the > more difficult version. Must be some weird kind of Karma. The story of my > life,:-) Aint that the truth. I often say me and old Murphy are blood relatives. One way to look at it is you probably have a lot of really good things coming your way down the road as these things have a way of evening out. The really good news is that it gets better fast. Even immediately after the last shot I felt better just knowing it was the last one. Then within about a week after the last pill I felt 100% better. So just hold on to that thought...this too will pass. Speaking of Karmic pay-back. After all the grief I got from my employer about 2 months ago they finally promoted me to the head of the dept. Ironically I had to let the guy go that had me written up for being emotional when I was on the meds. Karma AG Wow AG, that IS karma. He who laughs last laughs best. Say hello to Murphy for me. Congrats on your promotion. John >> Hi AG, yes naturally if there a choice of contracting one that is easily >> gotten rid of, and one that is more difficult, of course I would get the [quoted text clipped - 17 lines] > > AG >> Hi AG, yes naturally if there a choice of contracting one that is easily >> gotten rid of, and one that is more difficult, of course I would get the [quoted text clipped - 17 lines] > >AG BWAAHAHAHAHAHAHA! SACKED! What a great story! That is effing AWESOME! Cheers! And thanks for making my morning ;-) /greyhackles Priceless, absolutely priceless. John >>> Hi AG, yes naturally if there a choice of contracting one that is easily >>> gotten rid of, and one that is more difficult, of course I would get the [quoted text clipped - 25 lines] > > /greyhackles > Hi All, > Somehow I have made t to week 43 and have just a few weeks to go before [quoted text clipped - 42 lines] > that. T.T.F.N. and thanks for the support. > John in Honolulu, AKA Red Dwarf. John, Great to see you post. It is wonderful that you are so close to finishing treatment. You may be amazed by what a difference it may make in your outlook when you finish. You may actually be a really sweet guy under all that gruff exterior. : ) I am still amazed, sometimes, by how happy I am some days.....and nothing else has really changed. Getting on with ones life is something to look forward to. I just had out-pt. knee surgery today. Miniscus tear that has bothered me for almost two years now. I wouldn't have thought about trying to have surgery while on treatment. Maybe I can start with some gentle exercise now....hadn't been able to walk much, let alone exercise for a long time. I think it is like getting car tune ups. When something in your body starts to fall apart, you try to get it repaired well enough to last longer. Getting rid of the hep c was a big repair. Major over haul that helps all systems....outlook, endurance, inner workings of organs....reduction in the chance of getting fatal errors...such as liver cancer or cirrhosis. I'm going to be going thru Hawaii July 4th with a one night stay. E-mail me at home and give me your phone number and I'll call you while I'm their. I don't know where I'm going to be staying yet. I need to figure that out. It is just that it is a long trip from here to Texas and I thought it would be better to break it up with an over night stay. You will be finishing up treatment and won't feel like doing anything, I wouldn't think, but we could visit on the phone for a while...if you like. Take care, Hugs, Susie Hi Susie, Yes I'd like that very much. It's kind of late at night now, and I've got Dr. apps tomorrow, but I will send that e-mail with the phone #. If I had more time, I could have done background on hotels. If you will be in Waikiki, mostly you cant go wrong on the major hotel chains. They are all expensive, but I think it's the off season. Hotels.com could be a help. I've used them before when I had to be in SFO. Their rates are definitely somewhat less expensive that just going to the hotel directly. You'll love Waikiki beach. Bring a bathing suit, even if you're not a great swimmer. The beaches are marvelous. John >> Hi All, >> Somehow I have made t to week 43 and have just a few weeks to go before [quoted text clipped - 85 lines] > ----= East and West-Coast Server Farms - Total Privacy via Encryption > =---- Susie, You said July 4th, and for some reason I read June 4th, and panicked. That actually leaves plenty of time to make plans. You should love the fireworks show they put on here. Last year I just went into town by myself with a blanket, spread it out on Magic Island,(part of Waikiki, and not an island, actually just a small peninsula), and just grooved on the music and a spectacular fireworks show. Perhaps this year I may have some company instead of doing everything alone? That's a pleasant thought.Talk to you soon. John p.s. What gruff exterior? :-) If I was any sweeter, I'd melt in the water. > John, > Great to see you post. It is wonderful that you are so close to finishing [quoted text clipped - 38 lines] > ----= East and West-Coast Server Farms - Total Privacy via Encryption > =---- |
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