It is a good idea for you and the kids to get tested. But rest easy as most, and I mean a very high # of most end up being negative. I don't know why but family contraction seems to be very, very low. Good Luck
It would be a good idea for you and your daughter to both be tested for HCV. It's unlikely that either of you have it, but you'll never rest easy until you know for sure. The test is a simple, quick way to get the concrete answer you need.
Sorry to hear you are worried and totally understandable but chances are very slim,,,,Both my hubby and I had hep c and treated last year and cleared but we have 3 daughters and all tested negative. Get your daughter and also yourself tested for peace of mind.
Sorry to tell you guys, you probably get more iron in you system from taking a shower than you would from eating the whole iron skillet. Did you ever see water deposits turn orange, thats iron that has rusted; right from our water supply. Some parts of the country worse than others.
Jim we need the build bubbleland and who knows what we can use to cook with, since the pos/neg of all can be found. Did you ever read the warning on a gas pump, breathe the air in L.A. When I was a hairstylist I would have clients caution me not to put conditioner on there hair with animal products, all the while wearing leather shoes.
Most reports I've read states that the amount of iron ingested would have to be quite substantial to cause toxic ferritin levels unless you had some type of genetic disposition. This of course would be based on your iron levels, including bx reports were all healthy.
Let's not get carried away. Peace
Crushed, I have never seriously looked into treatment, as my PCP hopes I can wait until the better drugs come out, so the thal. minor hasn't come up. I think I asked him once about starting treatment, and as a PCP, he does treat some in his office, and told me the treatment might actually be worse than I feel, and he has seen some nasty sides.
I never asked about treatment with that, but obviously, he knows about it. I was kind of speculating that someone like us would have a tougher time with riba, and if you are any indication, that would certainly seem true. One of the big problems with current treatment is, you don't "just take riba and interferon". You might end up with neupogen, epogen, an antidepressant, taking aspirin, etc. Next thing you know, you are talking to your pharmacist more than your spouse. I also never thought to raise the thal. minor issue in here, as I am not sure how many have it. But yes, major would be a big problem. When people would post that the riba would knock their counts down to 12 or so, I would be thinking that that is actually normal for me. Thanks for speaking up though, as I am interested in your experiences with that.
yea you pretty much summed it up. because i've had the disease for quite some time and there is some liver damage they recommended i treat before my health deteriorated to the point where i couldn't tolerate the treatment. i'm still not really satisfied with the decision because of the limited success, sides and possible long term negative effects but i did have a healthy 4 log drop @ 12 wks. i'm really not sure i can hack the whole 48 right now i'm 21 wks in. like you my hgb has been running 13ish but when wacked with the riba dipped to 9.4 even though i had started on 40,000 IU of epogen, now doing 2 x 40,000 IU it has recovered to 11.2 on my last test. the new drugs in trials sound very promising but as i understand are still 2-3 years at least if they're accepted.
Sorry, I was shouting. Sometimes I wish I could leap through the monitor screen and escort people to their doctor's office to play the Woopie Goldberg character, getting all crazy on them to do the right thing for the patient who's not getting heard. But oh well, we live in an imperfect world LOL. So, can you butter someone up (doctor, nurse?) so that you also do a bloodtest tomorrow or the next day? I'd like you to get your procrit back up, too. Best of luck, and give 'em hell. (-:
Honey chile, your doctor is being an ass. You should have been put on Procrit already. I know it's tough going up against a doctor and it's even harder firing one even at the best of times, but you're getting some bad doctoring here. YOU NEED PROCRIT, just like others have said. Procrit stimulates the bone marrow to make red blood cells; it has no impact whatsoever on platelets. Unless there's a blood thinning issue at work here which I don't know about. (INA? do you know the answer to this one? Any other RN?)
S/he_never_ should have lowered your riba dosage like that.
The stabbing pain could be from liver stress from all the processing of toxins--mine went away after I got off treatment--but there's also a possibility it's your gallbladder. Is it sudden onset and unbearably sharp? Can you locate the area of tenderness on the lower left side edge of your right ribcage? Gallbladder inflammation is not uncommon on treatment, unfortunately. Do you have access to pepperment oil or peppermint oil in gels? That could help ease the pain, seriously. But I really hope you'll be looked at tomorrow.
10-4 on your comments, i was down to 9.4 even after 2-3 wks of 40,000 IU epogen (same as procrit). got PO'd so i gathered copies of all my bloodwork from the PCP and hospital found some troubling oversights. nurse and Dr. had agreed to stop riba till hgb recovered...problem is they never informed ME of this decision so i kept pumping 1200 MG a day. fortunately after going up to 40,000 IU twice a week it sterted to recover. also found other issues that i intend to raise at my next appointment, don't want to alienate the Drs but your right about the "experts". from now on i'm learning as much as i can and keeping an eye on things.
Can't loose the bejeweled sandals, don't have any other shoes here! And a guy is coming from a company to show us this software and how to use it w/ half this dept, half another dept...ought to be pretty entertaining! I have to keep the wings or the outfit wouldn't be complete!
I just ran into the VP of the hospital and anointed him w/ my wand...he said he needed a good anointing...another head of the hosp asked which one of us was out of costume and I told him he was! It's Halloween! I was taking a message to someone in the auditorium filled w/ Medicare speakers and about 100 people...I said I was the 'message fairy'...I'm having a good ol time today!
Procrit stings, for most people. Some feel it a little and some too much. I tried warm, and cold, slow and fast, buttocks or thighs, IT STUNG ME the same. I ended up shooting it fast just to get it over with. I remember there was ONE time it did not sting, but even when I tried to replicate the circumstances, it stung the next time. Then, you get people who said they felt nothing! Reinforcement that everyone reacts different.
Hi Everyone, I am new for this website. I just foundout that my father is Hep.C Positive with 30,000 count in his blood.( I don't Know what that mean)My dad lives with me and I have two little girls. Can anyone expolain for me how is this disease transmited to the other person also he will start his treatment in 2 weeks and Is there any thing i need to know about the treatment.
Welcome to the discussion group. It's hard to say what the 30,000 "count" means but if it reads 30,000 IU/ML then it means he has less virus in his blood than most people with hepatitis c. This is relatively good news going into to treatment. Do you happen to know what his "genotype" is and what "stage" liver disease he has. The genotype would be found in a special blood test everyone gets before treatment. He would know his stage if he had a liver biopsy.
As far as transmission within a family is concerned, it doesn't happen very often. That said, you should keep his personal grooming aids (toothbrush, razors, hairbrushes, nail clippers) away from the rest of the family. There is a small possiblity that the hep c could be transmitted from a small droplet of blood. But stuff like hugging and kissing and eating together -- no problem.
As far as what you should know about the treatment, the most important thing is that you dad will need a lot of love, support and understanding while on treatment. The medications not only affect the body but also the emotions. So, if starts to get mad or angry in an inappropriate way, try and give him the benefit of the doubt. It really is the medications talking.
As you're a first time poster, you should be aware that there are no doctors here. We're all Hep C patients either treating or have treated our selves or thinking about it. I'm in my 35th week of 48.
What week are you on? I am waiting to hear waht my latest RBC test result says. My nurse seems to remember that there wasn't anything significant about my test but walking across the room leaves me out of breath. I don't know how much more anemic I can get. I'm on week #9
I'm really glad you popped back in. Nothing more to be said.
I hope you'll work with your DRs to decide whether you can take the prescribed meds or something else. You shouldn't force yourself to go without. And you're right. Sometimes life isn't fair. Sad, but true. Our job is to get through those troughs. Hang in there.
PS Thanks for turning off the CAPS key -- it really does make it easier to read.
One thing that is important I learned in here ... educate yourself and before you go to your doctor (mine was a bit of a hard butt too) have all your valid points ready
a. b. c. why I need Procrit. why I need more Riba. why blah blah yippedity do.
If you sound TOO much a know it all they won't ever agree with you so just try and sound really naive but make the valid points.
Having all my documentation has REALLY helped big time - cause I can say look on 9/21 I was at this number and at 10/21 I am HERE.....you know?
People like Jim helped walk me through it and well = it's really working out well for me. knowldge = power.
Forget about anything I said to you too. I admire you for coming back here under your original name. I have been here for a long time and I've seen much much worse than the other day so don't give any of it another thought. The bottom line is that we're all in this crazy hepatitis thing together and we all know it's rough and cross words will get exchanged and we'll just agree to forget about it and let it all pass. Welcome back fresno. Mike
I didn't get to write you a condolense either. I am SO sorry for you. I just love my dog so much and I can't imaginethe heartbreak you are going through. They truly are little people I think in our hearts.
I did read that rainbow poem last week and it made me cry buckets. I hope you can think of it that way and find some comfort.
Yeah for you! Asserting yourself and asking questions! There is nothing wrong with it and oftentimes I've found the people in HERE to have better information than my doc. REALLY.
I do really believe that the knowledge we learn in here can give us peace of mind that we are doing all we can for ourselves. And in this riba world....peace of mind is something we dont have to often LOL.
PS Never just decide to go off of your Paxill. HOLY COW what a MESS I was...I can now say that stuff is completely addictive. But I'll deal with that later. ;-) I ain't ready to do that again right now no WAY!
Cuteus put it on the NOSE as always...WATCH THEM LIKE A HAWK!
THAT is the most valuable thing I learned here.
GI Bloopers...that is the most understated kind thing I've ever heard worded here. ;-)
If I didn't force them to do my CBC INSTEAD of just my hep panel and keep calling and calling and arguing they would never have even realized I went down to 9. He kept saying "oh you look great" like that was some big indicator.
From now on...no makeup, big baggy sweats and hair in a ponytail. Then I'll change for work.
What you LOOK like is NOT indicative of what is going on - but those GI Bloopers don't SEE that.
Oh that is exactly how I feel! Just to get from the parking lot to my desk winds me so much I have to stop and lean and rest....huffing and puffing!
I just did 6/48 on Friday. Tonight I start the 2x a week epogen. The once a week wasn't cutting it (it stopped my number from going lower but really...I think I'd be transfused if I felt any weaker than THIS ;-)
This was my third week shot of the epogen on Friday...still waiting for SOME relief but as everyone says it's a slow battle to get those suckers back!
While this sucks...at least we aren't alone. NOBODY in the outside seems to understand that "anemia" is NOT the same as when the doctor told them they were a little anemic you know? Ooooh drop to what 13?
i did lash out the other day. i have done nothing but rack my brain and try to figure out what happened. i have felt alone for a few days now. i pop in and read the comments but have been nervous to post. i do appreciate you asking for me. i do have a few things to say.... i am truly regretful for what i said, especially about the comments on losing a pet. i should have known better...i lost a 9year old pit 2 years ago and it tramatized me. i am sorry for that comment. my mind was so brain fogged that i posted comments about what other people hadn't even said. it's all like a big blurr to me now. i even considered staying out and logging in under another name just so i could stay, annonymously, but decided against it. after everything had past i saw that the ones that had left were already back and here i was, still out with the door still stuck in my ***. as far as my hysterectomy recovery is concerened i am doing better now just not sleeping more than 4 hours a nite which is taking it's toll on me. i was taking seroquel to sleep but i read that it is filtered through the liver and that scared me to death so now i'm not taking anything to sleep and it has worn me down. i continue to loose weight and i look soo yellow. i'm just really depressed right now. doc prescribed anti-depressant for me but i'm scared to take it cause it is also filtered through the liver. i'm scr***ed either way. life is so unfair. anyway...thanks for asking for me. it's good to see everything is back to normal with everyone here. see ya
Procrit definetely is worth its sting! I don't think I would have lasted as long as I did without it. I still have 4 vials in the fridge that I was going to donate. I can not believe how low some members here have gotten in their hgb and still function.
hepc in LA;
careful when they tell you; "everything looks good", look at the blood work yourself. if the hgb is in the out of range column, you are anemic. I found that any drop in the hgb would give me shortness of breath. My PA kept saying all looks good until 3 months into tx, I started getting a chest pain and I then learned the hgb was at 10.2. No wonder. When were they going to tell me, beats me. I started collecting my copies of bloodwork after that. I can't believe they kept saying "everything looks good"! That's what I mentioned to NYgirl when I heard that said to her, but in her case, they forgot to do the hgb, so of course all looked ok in that area.
All these experts, need our help, I believe.
sorry for my comment on the pain meds, it was out of line. I should have realized that something was going on with your emotions, I am glad Chev was more perceptive and addressed it.
Whatever was blurring your perception needs to be taken care of. PLEASE do not refrain from taking effective meds due to the liver filtering thing. The latter is an amazing organ, it can handle more than we give it credit. Heck, it handles hcv for decades without major damage. I took pain meds(I don't think it interfered with my perception of things or hope it didn't ;-}) and it did not interfere with the tx or svr. I had dental work with novacaine, antibiotics, etc. You have to take what is need it, or not doing it can jeopardize your finishing the tx. Whatever it takes, go for it.
Thanks for the advice. I will try to wrestle my RBC # out of my doctor. I'm guessing that my RBC is in the 12 range (from a starting value of 15.3). If that's the case, I wonder how crappy you feel when your RBC goes to 10. I'm already out of breathe and winded. Any deep breathe or a gulp of air just leaves me coughing.
NYGirl.. I can't believe you went down to 9 so quickly. What was your starting RBC #?
Cuteus..I'm in a study and they follow strict protocol. No way I can get my hands on Procrit til I drop to 10. Til the, I'm just going to take it a bit eaiser.
That's a good one! I wouldn't mind havin' those pumpkins! Funny thing, I forgot I have a meeting this afternoon and here I am w/ my bejeweled sandals and glittery wings! Oh well! One day a year ya gotta let it all go!
Finally talked to NP at Docs. Gonna do some blood today. Thinking pain might be gall bladder as some suggested. Will get results tomorrow I believe.
Also, mentioned my concern about reduced dosage. Well, come in and talk to Dr. Next opening is Nov. 29. ??? Well, it will be up to Doc if he wants to double book himself, will leave him a note. I am going to look for a second opinion now. Three weeks on reduced dosage is ticking me off. Shucks! Not quit enough Riba to form a rage today, tho I would like to right now! lol
It just goes to show you that you never know where the "better treatments" we're waiting for just might come from. Here's a short blurb from last Friday:
"Vanderbilt University researchers found that secretions from the skin of some Australian frogs were effective in the test tube at killing HIV, the virus that causes AIDS. They hope their findings will lead to the creation of a topical ointment containing synthetic secretions that will help cut the spread of the deadly worldwide pandemic."
I gotta run because I just dont want to hang around here too much today, miss my doggie a lot, but I just wanted to say for my part that I'm okay about everything. I've learned the hard way, ha ha, that I shouldn't read too much into statements made in anger when someone is on tx. I want to have more compassion for my own suffering and other;s too, I just feel better that way. One of my best friends was on it while having to take AIDs drugs at the same time and had a helluva time...he used to singe my hair he'd yell at me so hard sometimes...but I mananged to just take in stride for the most part...and when he was completely unbearable, I'd just screen my calls, he he. (Sorry for gigling about this rather serious issue but sometimes I think if you don't laugh sometimes your mud.)I think his dogs would make themselves scarce when he had his shot night, he he he.
Fortunately, he cleared and he's okay now. Guess my point is we only know certain aspects of each other anyway on these boards, unless we get to know each other offline, and I'd just like to take the high road and give people the benefit of the doubt if I can. That's not to say that I want to routinely take anyone's abuse, but the disease alone is tremendously stressful and/or depressing and a huge mind****....I can't even imagine how tx would be on top of all this. And you had a hysterectomy to boot, gheesh. When and if I take the stuff and have meltdowns, whatever, I'd like at least some people to give me the benefit of the doubt and realize that I'd probably be doing the best I could under the circumstances. Hope you feel better soon.
Chev, that was good of you to make a reach out call. Mending fences is nice when it happens, especially around here, he he!
Oh boy! I see the extinction of some Australian frogs in the future as folks begin squeezing the juice out of them> argh!
foresee; I did not get a chance to comfort you at the loss of your dear friend. When my pets die, writing a farewell poem helps me. There are some sites for memorial postings of our unconditionally loving friends. The first time I read the Rainbow Bridge poem, I was at the library and my pet was very ill, it was hard to finish reading it at that time. Later I found out that is never easy to read it.
do you have any other pets?
OMG! lol< they decide things and don't tell the patient? typical. that is what is so sad.
In my case they lowered it to 800 from 1000mg and forgot to tell me to increase it after hgb normalized. they told about 3 mo later. I used that one to insist on longer tx, though. Their mistake could have cost me a SVR.
we can fill volumes with GI bloopers, some quite scary.
Glad to see you popped back in! You do need the forum as you are going through tx. It does make sense like cquest mentioned,,,that you were thrown into menopause on top of it. Everything you have been through,,,,Take the anti depressent,,,You need it now to get your through this period and then when you have recovered more so,,,,you can think about getting off of it!
My own experience w/hysterectomy and still keeping your ovaries:
I went crazy for 2 weeks after the surgery...no joke...I would wake up in the morning, before I could make it to the bathroom, be in a puddle of tears on the couch sobbing like a baby, suddenly stop and say "where am I?" and realize it was morning, not lunchtime or whatever...very freaky! Never in my life had I been so out of it! The doc said it was a 'mini-menopause' ie your body is freaking out....since my doc was a male I don't think he realized how serious the situation was...what do men know about how women feel? Nada! So anyway, be careful and don't worry, I been there too and so have lots of other women unfortunately...
Take the anti depressent. I have been going through menopause for 2+ years now (I'm 49). I was put on Paxill in the beginning which seemed to help until I had a complete breakdown in my doctor's office. I got on the scale and I had gained 15 lbs. I started to cry like a baby and all my emotions came rushing out, making no sense whatsoever. I remember screaming at the top of my lungs, "Oh God, I'm a fat woman now..." (actually, I'm rather thin). This was prior to starting tx. When they finally got me into a room and away from other patients, the Dr. told me that clearly the Paxill was not working anymore. He put me on Effexor. I have been on it ever since and it really helps. I still have mood swings, hot flashes etc. There are times I am not sure which side is coming from the tx and which is the menopause. Hormones or Anemia..........gee.......which is it today?? Havin' some fun now! Seriously, I strongly advise you to take the ad's for now, it will help.
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