Concerned

How can you contract Hep. C?  Is there an immunization for it?

[Tony-z]

Welcome to the Forum!
Just to inform you we are not Dr here.
Hepatitis C is a blood to blood transfered Virus. You cannot get it by kissing, drinking from a glass from an infected person,
Things of that nature. It has to be Blood from an infected person to another person.
There is no vacine, for Hepatitis C.

Here is a link to a web site that can answer most any question you may have.

Cut and paste

http://www.hepatitisneighborhood.com/default.aspx


              TonyZ

[couchpotato]

Hey ringading, hoping you can help me out or point me in the right direction. Don't know what it is like in Quebec but the B.C. government will pay for only one course of tx. (this is for people like me who have no health ins. through work or or other types of private ins.) I know that in U.S., the drug companies offer assistance but do you know if it is available in Canada also? My husband was pulled off peg-intron and I am wondering if pegasy's might be easier for him but at this point we cannot shell out the thousands and thousands of $$$$$$ needed. We have appointment in Vancouver on Monday with transplant docs. and at this point I don't know if it is an option they would want us to explore but thought maybe I would at least explore the monetary hurdle before I even bring up the possibility. Any thoughts????? Thanks, Couch  Ohhhh, sorry for breaking into the thread!

[derail]

I think now is the perfect oppurtunity to raise hell about this the lying liberals are currently looking for reelection and try to bribe us with new money for our health services the very same money they cut from the health budget to provinces some 10 yrs ago. and they padded thier payroll and benefits to absurd levels  if we dont go after them about tx now, it will continue to worsen these idiots cant see the forest for the trees Ithink this procedure is also applicable to our American friends its their election year also. voter apathy, such as my vote wont matter ;will only enable therighteous few? to continue to dictate to the many :remember they work for us and if we arent part of the solution we are part of the problem  ;sorry for the political rant but i really get pissed about decisions by govts that impact people like this back in the 60's ilike to think we influenced changes by this method and it may be time for all of us to start again power to the people woops another flashback
as  well i currently am trying to interest  wealthy former clients of mine to set up amedical trust fund to assist those without private ins. for their expenses if they contribute to a charity like this ,a tax reduction is available so they really arent out anything ..no taxes for a tax credit any want enough ranting love to all

[ringeding]

hey there....well, actually i may have some info for you.  i was recently at the hepatisis c conference in vancouver and have some numbers, but have yet to follow up on anything..let me do a bit of checking. Health Canada, just approved the use of pegasys here FINALLY!! there is i am sure some support for tx espeacially now, with pegaysys being approved here. as for the insurance issue, i will also find some contacts for you.  although it is a frustrating process, there is funding for your husband,(for meds) its just a matter of figuring out who and what to channel you through.  let me make some calls to someone who will have more info for you, for B.C.

....also, what is his geneotype? biopsy results? how long did he tx before being removed from pegetron? i imagine like me, he was not given any additional med. support when his numbers dropped really low.  also, was he given a PCR at any point through tx????.....or after????....you mention the appointment with transplant doc's coming up in a few days....i assume he is not doing well then.  also, could you give me his age, and is he over weight?  just a few questions dearie....and i will get back to you asap!!!


DERAIL....never apoligise for your political 'rant'...we are experiencing some very frightening changes in this country and more people need to rant and rave about it.  at this rate there will be no health care and no old age pension within 15 or 20 years...i have a quote i used in my book from a friend, who said, "If your not angry, your not informed" (murray angus, 1990)....so start raising hell and writing the globe and mail and the national post !!!!

cheers
kimmy

[couchpotato]

Thanks Kimmy, I only hope with my brain fog, I don't miss answering any of your questions. He is 52 (birthday in Sept), genotype 2 and not overweight. He was on tx for 3 or 4 months but kinda spuradically(?) as his platelets were a constant worry. He missed quit a few shots because docs wanted his platelets to recover and when they finally went down to 20 he was pulled off. He never had a bx or PCR and it was with a total calculation of blood counts that he was dx with cirrhosis and his specialist in Victoria made the arrangements for him at transplant center for evaluation. They said last year he was a 6 on the Pugh score so while he is not on a waiting list they are monitoring him yearly. He has no symptoms his condition is worsening (once in awhile he has puffy ankles, so all in all he is doing well. The hep c must be stopped to avoid further damage, he quit drinking 2 years ago. I am currently on tx, genotype 2 also and praying my WBC and RBC's don't drop any further as Procrit and Neupogen are "unavailable" for cost reasons! Pricks!!!!! Fine mess eh?  Thanks for any info you come across, Ringy.  Couch

[cuteus]

after reading on the woes of your health system, and even though it probably won't affect anything, I feel the need to apologize for some fellow US friends who abused (and posibly still are)your health system.  back in the 70's they crossed the border from VT to score Rx for narcotics and crossed back into VT with bottles full of them. I don't know how many years it went on, since I left in 78, but they thought Canada had a "free" health system.  How naive, everyone seem to be paying for the abuses of many.  Sorry for my contribution, since I drove the car.

[audreywald]

Hi there hon.  Long time no chat. I caught your hello to me but the thread was closed.  How are you doing?  

I am doing ok, 2 months post tx - still some residuals but I think they are improving slowly. Tx was very rough for me, and the 13 shots probably will not have done me any lasting good, but it does not look as if they have done me any permanent harm and for now that will do.

How are you feeling?

[honey1616]

Wow....My heart goes out to you guys struggling to get meds,,,stay on meds,,,and then grief of any needing anything else while on tx,,,sounds like that is out of question so you suffer in your home afraid if blood work drops,,,you will be pulled off.  Tough System!

Cuteus,,,Well, well , well,,,aren't we the little rebel! haha  Just kidding with ya! Actually,,,you just never realize at times how you maybe effecting someone else down the road and we all do all the time..You better believe it..

[cuteus]

HE CALLED! I almost had a shock, never was expecting it to happen. It was a wonderful weekend.
Yea, rebel...you are right about the snowball effect. how ignorant can we be at times. I rebeled against the church, the system, the "man" and the darn bra...that last one I'm paying for.  be well.

[honey1616]

LOL  Great news!!  What more could you ask for.....48 week showdown and the guy back in the picture! I know you have said before but couldn't remember,,,,you are going 52 weeks right?  And because???  You didn't clear at 12?  Did you use the heptimax test at 24 weeks?  viral load is low if I remember correctly,,,And not sure on your bx either?

[Showboat]

I just read that you are extending to 52 weeks.....I am sending good vibes to you.  

Glad to hear about the phone call too!!!!!!
:>)

[ringeding]

hey couch, sorry, i had a huge long reply all typed for you and had to take off for a few hours...and it seems i just lost the whole post...so i'll try and re-word....first off, how was it determined he had cirrosis (cirrhosis) without a biopsy?  was he ever a heavy drinker?...also i guess i would question his doc as to why he kept him on and off tx so often....it is not nearly as effective if not strickly adhered to...ie: no missed shots or riba if at all possible....i am wondering if maybe the doctor was treating for the first time and paniced when he saw the blood counts drop..thus pulling him off tx than back on...repeatedly..it is entirely possible to treat and continue, even with the drops, (i did)without interruption.  you just need to seriously adjust your life in most cases.  being that we do not get ANY extras here,(to compansate for low counts) it is than a matter of will and determination.  and questioning closely your doctors thinking/motives in wanting to take you off tx. at any given time.

  i also wonder why the doc is sending him to the transplant clinic at this stage than, without even a biopsy and not considering other options first, as it appears he certainly wasn't given a very good fighting chance the first time around, and seemed to lack doctor, or GIPA assistance.(unless there are other circumstances)...Health Canada has just approved pegaysas for use and i am sure that he could be covered for this, it is 'said' to be somewhat gentler than the pegetron, which i just finished and which he would have been on)  being a 2 or 3 we have the best chance to clear....

who is your doctor there? and is he/she located in vancouver or victoria??? G.P. or specialist?? there are some wonderful specialists in vancouver doing great work. i have sent out a few e-mails to enquire for you re coverage etc. to people i know that would be more aware of B.C. legislation/health care/programs etc. okay...i am sure i am forgetting some stuff here, but i'll post again if i have.....take good care sweetie and give him my best as well....
stay cool!
kimmy

CUTEUS.....aka BONNIE...get away driver!!!! hahaha you wild girl you.  thank you so very much for that but i think the health care system here has been in turmoil for sometime now, and while you would, and we, think it is 'free' on some level, there has never been anything 'free' about it...we pay for it as we are highly taxed to compensate for this, sadly, the level of care in most cases is bare minimum, with NO frills!!!

hugs

[cuteus]

Yes, 48 wk showdown and love, I will take that combo and savor it.

  I am doing 52 and then re evaluate at next appt. I showed clear at 24+ wk test.  the test went  to  <50iu. I think I will ask for a new vl now and try to use the heptimax since I do use Quest for my lab.  I only started with 374,000 vl and figure must be slow responder since i did not clear at 12 wks. it was a 1.8 log drop per Willing's calculation, and you know his math skills.
If I do the  36 to 40wk extension beyond clear date, it should be Sept when I end it. The bx showed mild damage ( mild periportal inflammation grade 2 and mild periportal fibrosis stage 1).  The fact that there was some fibrosis, did not sit right with me.  and to think the first GI did not want to do anything, not even a biopsy until the enzymes showed abnormal.  I guess since it is not HIS liver, what does he care?
48 wks seem so far ago, so far I could not fathom getting through it. Thank God I have been able to manage the bad as it comes and continue.  
How are your sides? and how is your hubby these days?

[ringeding]

hey girlie....so glad to see you here....i have been away for a time from the board. a self imposed time out hahaha!!! i am so glad you are beginning to feel better, i know you had a really rough go of it dear, but glad that things are becoming better for you.  i am now exactly a month...wow...is that all?...post tx and i feel wonderful, actually i noticed a marked difference almost right away. i find it hard at times to remember just how horribly weak i was.AHHH NO I DON'T...but i am thrilled to feel as well as i do now....won't have any indication of whether or not i have cleared til around xmas or after, they will only do a PCR here 6 months post tx...and then the longgggggggg wait for those results....could be in the new year!  my only woe is that once i COMPLETED tx....my hair REALLY started falling out.  its shocking and uncomfortable as i have always had a huge head of very long thick curly hair.....identity crisis!!!!!....just looking into some custom made real human hair systems to pump up whats left til it grows again....other than that, my spirits are as usual really good in general.  i hope the same for you my friend. if i remember correctly, which i may not... your grand child must be about 3/4 mo. old now, how is all that going now...i think of you often and wish good things for you!!!

huge hugs girl
love kimmy

[ral]

That is great news. Sometimes being calm and nice will get more than ranting and raving. I am sure it will work out

Good Luck

Bob L

[cuteus]

now see what you have started? bonnie and now clyde?  and if Indy gets hold of this one, he can carry it real far...maybe send the badger as a messenger to the hep world..Bonnie is back and she is riba mad...
i guess this side will also pass...i hope..lol

honey...hand numbness was what finally got the rheumatologist to test for hep c.  bless her wisdom.  night splints help tremendously,  so  much so that I even tested negative for carpal tunnel after 5 years from first test. I got 3rd test and it is still there and might need surgery in the future.
It is hep c in my opinion.  No one could figure out why I had it, no typing in my work or repetitive motion.  I can't do push ups, palms on the floor hurt.  good excuse not to do them...heh heh

[couchpotato]

Hope you are still up, it's getting later in the east. From our understanding you can be dx with cirrhosis without a bx by a calculation of your bilirubin, albumin, PT, platelet etc. levels. I suspect it is not as reliable as a bx but because of his platelet probs, this is the only route they will dx by. He has a specialist in Victoria who seems very knowledgeable and we tend to trust him. Also believe that he got hubby into Van. sooner rather than later and although it is a terrifying prospect we are happy the "big guys" are on his case. Specialist Man is the one who kept asking him to skip his shots, all in the hopes his platelets would recover. Although we know success of tx is determined on completion of meds, we felt we had no choice but to believe in the "professionals" (Me, I'm going to pretend to forget to get blood drawn, if it gets to that, thanks for the idea). Anyway, now I am hoping pegasy might be the way to go, with Vioxx, if we can get funding. Thanks for the help Kimmy, and the ear.   Couch

[hepcgetlost]

Cuteous...your story is so much like mine it's uncanny. I too began with what I thought was a fairly low viral load...738,000 (although I've known it to fluctuate the past 11 years from 350,000-1,700,000...still not terribly high) and stage 1 fibrosis, mild inflammation. I was totally disappointed at 12 weeks, not to clear...although I did go down by just about 2 logs...but still, it was such a bummer. I tested undetectable at 19 weeks, and, as you know, am also wanting to extend tx if at all possible. First I have to figure out how I'm going to pay for the next 6 months. Which brings me to a piece of  potentially VERY GOOD NEWS.

This is to you, Chevy and everyone who has been so kind and concerned and eager to help in any way possible. I believe that all of your good vibes have caused this latest potential positive twist to my story. I've been on the phone for the past 4 days trying to find a solution to my insurance problem.  Even if the copegus pills are taken care of by some of you beautiful angels, six months of pegasys alone costs something like $8000. I don't know about you, but that's pretty daunting for me.  Make that damn near impossible at the moment.

Until this afternoon, I was having no luck anywhere, and I was working the phones like you wouldn't believe. Well, it was definitely worth it, because today I found out that Pegassist might actually be able to help me...it's not for sure yet, but when I told the reimbursement analyst that I'm completely maxed out on my Rx benefits and still require at least 6 months of tx, she had me hold on for a long time, and when she came back to the phone she said she might be able to help me. Maybe it was because I was really being very nice and I must have sounded scared or desperate because I could tell she felt sorry for me...I don't know, but I'm just so happy that there's a chance.

She faxed several forms for me and my doc to fill out and I have to pull together the last year and 1/2 of medical bills, tax returns, and get my doc and insurance company to write letters, and IT JUST MIGHT WORK!!!!

I'm thinking good thoughts, filling out the forms, nudging my doc to do his part, and hoping and praying that this may really happen.  Thank you all for trying so hard with me to find answers. If I'm not mentioning you by name, it's only because I'm going to be up half the night going through last year's medical receipts. I am grateful to every one of you who have sent good thoughts and ideas my way and made me feel more supported than anyone has a right to feel. Love and hugs to everyone and I'll keep you posted on what happens next. What a great day it's been so far!!!!! Chevy, how are the extra brain cells doing? I think you're just getting smarter by the minute! Judi

[fsplink]

I haven't had treatment yet and I've notice a lot of numbness when I lay down at night too. It also happens when I'm on the phone a lot. I really think this is the Hep C. The doctor gave me splints too but I haven't use them much cause they really bug me!




Hoping everyones sides will be tolerable!

[honey1616]

Judi,,,Great news!! Hope everything works out for ya!

Fsplink,,,Yes I have heard people complain about it like you said before treating.  I guess its just weird that I never had this happen before tx.  I'm hoping that tx isn't bringing on some extra baggage for me and its just a side that will go away after tx.  Are you going to start tx or undecided at this point?  Good Luck to you!

[Showboat]

Chev:::: Yes, thank you....I still would like to know about it.

Hepgetlost;::::; Hip hip hooray!!!!!I am praying that this works for you.  Way to go.....sometimes it takes a lot of "leg work" to get things done, but it looks like you may have done it.  You must definitely keep us posted........:>)  I've got my fingers crossed for you too.

[honey1616]

Wow,,,You have a very low viral load.. I would think by you extending,,,that this should definitely do the trick and your bx looks good so you should definitely clear.  We have so many people just finished or finishing up soon,,,it will be interesting to have everyone report post tx next.  My sides have been ok,,,past 2 days after shot,,,I have been getting some bad headaches but other then that,,,I can't complain as I know some have really bad. Something I just noticed past 2 weeks is sometimes when I'm laying down at night,,,my fingers or sometimes my wrist goes numb??  My hubby,,,has been doing so good (fingers crossed) He does notice of course that he tires more easily and its getting really hot here so we both notice the heat zaps you more.  But other then an occassional headache or fatigue,,,He seems to be moving right along.  Thanks for asking!

[cindee]

Hi, We haven't spoken to each other in quite awhile. Remember we live very close to each other. I just wanted to know if you are going to my "new" doctor in Charlotte? His name is Dr. Reindollar. If you have any doubts about the doctor you are seeing or will be seeing, I recommend him 100%. He also has some trial studies going on and if you qualify...everything is FREE! He is one amazing man. And another plus is that he has his blood lab right there in his office. As many of you know, running from here to there can be very hard on you, when you are on tx. His office is @ 900 East Blvd. It's called Carolinas Center for Liver Disease. Hope you are feeling well these days. I just thought you might like to check him out. Prayers, Cindee

Cuteus.....I'm so glad he called!!!! See there, PRAYERS do work! Hope this post finds you well. Love ya, Cindee

Audrey, Hey woman! It's been a while since I've spoken to you. I am so happy to hear you are feeling better! You are always in my prayers.....continue to get back to your "old self" very soon. I'm still pullin' for ya girl! I love ya very much, Cindee

Everybody, Hey family. Just wanted to let you all know I have horrible numbness in my left hand...starts above my wrist and goes all the way to my pinky @ into my ring finger. I was so taken back w/ all the wonderful news w/ my new doctor, that I forgot to mention it. I will next time I see him and I'll let you all know what his thoughts are on this aggrevating problem. (((((HUGS TO ALL)))))  Much Love @ Many Prayers, Cindee

[honey1616]

That would be great if you could get some comments from your dr on what causes that....You and your neighbors have been in my prayers! Good neighbors sometimes are so hard to come by so when you have some like you that mow, cook for you, and even make gifts,,,That is a true Jewel! I know it must be so hard on their whole family and will send some extra ones their way!!  Take care!

[derail]

ring thanks for the rant encouragement it sure feels good to unload about those useless minions.spent this am (early working in the garden and greenhouse .it will bea treat to enjoy the fresh veggies soon  i wonder tho, when the feds will try to tax that as well....regards to all keep the faith... daryl

[fsplink]

I've been trying to start for a couple of months now. My
insurance doesn't pay but 80%. And we just can't afford the other 20%. My husband has it too. I start the application for Pegassist but now I've changed doctors so I've got to start over. I'm now going to Dr. Reindollar (Cindees Dr.) I thought I could qualify for one of their clinical studies but now they say they have to find out where the anemia is coming from first.
What a wild a strange trip this has been. Anyway, I've been reading this forum since December so I feel like I know everyone.
Aren't you and your husband treating at the same time? If so, how is that working out? We were told by my other doctor not to try that but, I don't know. It seems like it would be better to get it all over with at once. (If we don't kill each other from RIBA rage).

[fsplink]

Sorry to post twice I didn't see your comment before I sent the last one in. Yes, I am going to see him. We just got to see the PA this week. My husband goes back in to see the Dr. in 4 weeks and I have to find out about the anemia first. They are scheduling a colonostopy(spelling?) for me. Anyway, the people there were real nice and they found stuff the other Dr. never even mentioned! Go figure. I guess he would have started me on treatment anemia or not. That would have been trouble from the beginning.
Okay, I shut up now. Hope everyone has a good day.

[honey1616]

Yes...I do remember now about you getting into see Cindee's dr.  I'm sorry that it has been difficult for you to start meds and yes the 20% alone can put you in the poor house.  How anemic are you or do you know your blood count?  Yep,,,My hubby and I are both treating at same time and there is another couple that both have it,,,Couch and her hubby so this will be a great place for you guys to come for support as it helps so much!  Alot of people here did say when I first came in beginning,,,not for 2 in household to start at same time because it would me wild! When going to our dr for first time and discussing this with him,,,he said he had some other couples that went through and same time and also mother/daughter going through and they were doing it.  So yes,,,then you have to decide what is best and really not even knowing a whole lot about all these sides that everyone is talking about haha  Soooo,,,,its a decision, But,,,we decided we both wanted to jump in and do since we had the year treatment and decided we didn't want to one do yr and then start another yr out of her lives.

Honestly,,,its not that bad,,,its as workable as one in house going through,  Actually we both have such an understanding of how the other one REALLY feels that we just know and don't have to ask questions.  Its worked out for most part when he has bad day....mine is good and I take up slack, and vice versa.  Since starting we have had total maybe 3 very bad days that fell together.  I guess like both having bad flu and my mom came out and brought food.  Honestly,,,other then that,,,not bad and you will work it out no matter what you guys decide to do for the best of your situation.  Good Luck to you both and my prayers are with you!

[derail]

wow 5 canucks i guess we will have to stop having so much fun welcome aboard to you too