Aa
Lots going on but how bad is it?
My fiance who has Hep C began to experience facial swelling. A trip to the ER at the VA Hospital came back with a DX of CHF. TX was Laxix and low salt diet. He had already spoken with a Liver Dr. about taking TX with Interferon/Ribaviran but was told they needed his Genotype. After another month passed he was told he is Genotype 1 but since he has CHF they could possibly give it to him 1/2 dose at best. His liver is cirrhotic, he has already had two bouts with Hepatic Encephlopathy (mild to moderate), he just had an upper GI which showed 3 Esophogeal Varicies with only one being a bit large, his feet, legs, and face continue to swell even with the use of Lasix. I am beginning to feel the DX of CHF was in error and it was the liver disease presenting instead as his Ejection Fraction was 65 and the last time we went there was no detectable heart murmur. The liver Dr. we spoke with was very abrupt and seemed displeased when I asked about the possibility of using Ridlin for fatigure and even when I suggested he had experienced the encephlopathy. However he did prescribed Lactulose and it seems to be helping. I feel with all of these symptoms he should be close to the point of being put on a transplant list. Can you tell me what else they are waiting for? They said he is an 8 but transplants are done when you are around a 21? Is this just them blowing smoke since we are dealing with the government? Thank you for your time and I'm grateful for this sight, this is a scary time for both he and I.
No,not on tx...you might remember back in August I started and stopped after 5 days...but to be honest, I am thinking more along the lines of tx again even though my liver has supposedly no damage and mild inflamation...maybe my body is just super sensitive...The reason I found out I had this was because of all the infections I get...it took a PA to finally test my liver functions (which by the way had been out of whack for a while I realized after going back over old ER reports for heart palipitations). I'm a mess...that's all there is to it...
Cin
Cin
Well thank you. I'm a geno1. gr 2, stage 1to2, starting VL 18.7million.
Yeah I'm planning on clearing, my 12wk was 291,000 so i'm responding. The present question is whether to treat more aggressively or longer. Hence the doc's later today.
LOL: Perceptive: however-I'm born and raised in CT. Dad was born in Mass but the family is all from Prince Edward Island. TONS of us up there,and down here. A lot of my 30 1st cousins down here still go up to visit. My Grandpa came down sometime in the early part of 20th century. I have a very large notebook with the family history going back to 1639 when one of my ancestors left France for Canada.
Actually going to a wake tonight for my Dad's 93 yro bro, who was born in P.I. Hardy stock. Dad has two other bros in 90's and I guess 7 of the original 12 siblings still alive.
Only thing is when I was a kid I picked up the et al from my Irish mothers notebook. She was a legal secretary.
:)
Yeah I'm planning on clearing, my 12wk was 291,000 so i'm responding. The present question is whether to treat more aggressively or longer. Hence the doc's later today.
LOL: Perceptive: however-I'm born and raised in CT. Dad was born in Mass but the family is all from Prince Edward Island. TONS of us up there,and down here. A lot of my 30 1st cousins down here still go up to visit. My Grandpa came down sometime in the early part of 20th century. I have a very large notebook with the family history going back to 1639 when one of my ancestors left France for Canada.
Actually going to a wake tonight for my Dad's 93 yro bro, who was born in P.I. Hardy stock. Dad has two other bros in 90's and I guess 7 of the original 12 siblings still alive.
Only thing is when I was a kid I picked up the et al from my Irish mothers notebook. She was a legal secretary.
:)
Kalio; I agree with you on your assessment about the debate deviation by the name calling route. What a surprise there, eh?
I always liked the wit and knowledge he exhibited and feel dismayed when he lowers his style to just plain rudeness instead of the wittiness. He has many that don't like him and attack him at every chance they get, especially at delphi, so maybe that has shaped his words accordingly. I enjoy his writings most of the time also, even if some of my friends don't.
Louise! How are you doing? there is a guy(scubadiver) from Spain that has been checking in on occassion, maybe you are neighbors? You are coming back in MAY? We should have a little celebration, when was your last PCR?
t26, that chevy has some memory! I remembered your story but not your name until she called you by your first monicker! Glad to see you are enjoying motherhood in all its bloom of laughter, love, and some heartbreak at times. It is all part of the package and well worth it. But we want our babies to never suffer.
JM; if you are reading this, you have no idea how happy you have made my eyes! I could have kissed you! the reason? and I hope is not because you have a spelling problem, is THAT word in Spanish.
no problemA! or no hay problema to be precise. but you used the right gender and I will luv ya for that for a long time! You have no idea how my ears and eyes suffer when they do the improper version! and now...watch the pranksters get even with me by that venue. I'll enjoy it while it lasts!
I always liked the wit and knowledge he exhibited and feel dismayed when he lowers his style to just plain rudeness instead of the wittiness. He has many that don't like him and attack him at every chance they get, especially at delphi, so maybe that has shaped his words accordingly. I enjoy his writings most of the time also, even if some of my friends don't.
Louise! How are you doing? there is a guy(scubadiver) from Spain that has been checking in on occassion, maybe you are neighbors? You are coming back in MAY? We should have a little celebration, when was your last PCR?
t26, that chevy has some memory! I remembered your story but not your name until she called you by your first monicker! Glad to see you are enjoying motherhood in all its bloom of laughter, love, and some heartbreak at times. It is all part of the package and well worth it. But we want our babies to never suffer.
JM; if you are reading this, you have no idea how happy you have made my eyes! I could have kissed you! the reason? and I hope is not because you have a spelling problem, is THAT word in Spanish.
no problemA! or no hay problema to be precise. but you used the right gender and I will luv ya for that for a long time! You have no idea how my ears and eyes suffer when they do the improper version! and now...watch the pranksters get even with me by that venue. I'll enjoy it while it lasts!
You will be clear of this bug, try to have faith. I will be praying for you. You know you have friends here you can always turn to. We will help in any way we can. What geno type are you? Is this your first treatment?
I see you adressed us (Kalio1 et all) this tells me your from France or Canada, as et means and.
My wife's grandmother ( Gramere) was from St. Pierre and she raised her here in the States.
Please let us know how your doing, and God Bless you.
BB
I see you adressed us (Kalio1 et all) this tells me your from France or Canada, as et means and.
My wife's grandmother ( Gramere) was from St. Pierre and she raised her here in the States.
Please let us know how your doing, and God Bless you.
BB
I forget where I'm going too! I finally decided that when it happens, I will just keep driving until it comes to me...I figure I MUST know what I'm doing and where I'm going so it's just a matter of time before it comes to me...then it always does...one time I forgot what season it was...now that was strange...
All this brain talk has me thinking I'm going to make an appt. w/ the doc and find out if my dizzy spells are part of this HCV thing...
Cin
All this brain talk has me thinking I'm going to make an appt. w/ the doc and find out if my dizzy spells are part of this HCV thing...
Cin
Hi there, hope you get to read this.
I read your post above about your adopted children. So sorry to hear you guys are through this. I'm praying that your precious little ones will be okay.
My hubby & I are hoping to adopt once we get to the States in May. We're currently living in Spain as my hubby is a military man.
I wondered if you'd mind answering a few questions with regard to adoption? I won't put my e mail addy here just now in case you miss this post, but would really appreciate your advice.
Louise
I read your post above about your adopted children. So sorry to hear you guys are through this. I'm praying that your precious little ones will be okay.
My hubby & I are hoping to adopt once we get to the States in May. We're currently living in Spain as my hubby is a military man.
I wondered if you'd mind answering a few questions with regard to adoption? I won't put my e mail addy here just now in case you miss this post, but would really appreciate your advice.
Louise
Running out of room here. LOL.
A couple of other thoughts...
I had weekly PCR's from week one so week 6 was my actual number. Also did some double-dosing for a few weeks (2-5) although based on my first week PCR I don't think I needed it. Pre-tx viral load was 1.5 million and week 1 PCR was 16,000. Of course the test numbers for week 1 didn't come in until after I started the double-dosing. Also did some high dose riba -- up to 2000mg/day (also probably didn't need) which put me in the ER at week 3 and then I had to go off riba for a week. Not sure if the Drusno model factors in all this plus by his own admission Drusano said his 36 week add-on is conservative by nature since they didn't test all that frequently. In other words, some of the subjects studied who were pegged clear at week 12 may indeed have cleared a lot earlier. For this reason, the 46 week rule -- as my doctor calls it -- covers some of those bases.
Regarding the riba. As you may be finding out, I'm kinda riba crazed. The famous Sweedish Pilot study came out around day 3 into my treatment and I was so captivated by it that I changed doctors and found someone reckless enough (like myself) to let me experiment. LOL.
Not mentioned in their studies, but something I've heard anecdotally, is that some non-responders started responding *late* in tx after switching from normal riba to high dose riba.
I understand this flies in the face of the commonly accepted knowledge in this country that riba is more important early on in treatment. And yet, the more I read about what they're doing in Sweeden, especially basing treatment on serum riba levels -- as opposed to weight -- so much more elegant -- the more I tend to think that riba simply hasn't been studied enough in this country in terms of how it can effect SVR.
And from the discussions I've had with doctors over the year, I doubt it will be. No one likes riba -- not the patients, not the doctors. So the money will go for newer and better drugs and riba will probably just fade one day as it probably should. Still, since most of us are currently on only two drugs -- Peg and riba -- it would be nice if more doctors here tried to at least emulate some of the Sweedish work, and especially look more into dosing based on riba plasma serum levels.
Well, that's a good night.
-- Jim
A couple of other thoughts...
I had weekly PCR's from week one so week 6 was my actual number. Also did some double-dosing for a few weeks (2-5) although based on my first week PCR I don't think I needed it. Pre-tx viral load was 1.5 million and week 1 PCR was 16,000. Of course the test numbers for week 1 didn't come in until after I started the double-dosing. Also did some high dose riba -- up to 2000mg/day (also probably didn't need) which put me in the ER at week 3 and then I had to go off riba for a week. Not sure if the Drusno model factors in all this plus by his own admission Drusano said his 36 week add-on is conservative by nature since they didn't test all that frequently. In other words, some of the subjects studied who were pegged clear at week 12 may indeed have cleared a lot earlier. For this reason, the 46 week rule -- as my doctor calls it -- covers some of those bases.
Regarding the riba. As you may be finding out, I'm kinda riba crazed. The famous Sweedish Pilot study came out around day 3 into my treatment and I was so captivated by it that I changed doctors and found someone reckless enough (like myself) to let me experiment. LOL.
Not mentioned in their studies, but something I've heard anecdotally, is that some non-responders started responding *late* in tx after switching from normal riba to high dose riba.
I understand this flies in the face of the commonly accepted knowledge in this country that riba is more important early on in treatment. And yet, the more I read about what they're doing in Sweeden, especially basing treatment on serum riba levels -- as opposed to weight -- so much more elegant -- the more I tend to think that riba simply hasn't been studied enough in this country in terms of how it can effect SVR.
And from the discussions I've had with doctors over the year, I doubt it will be. No one likes riba -- not the patients, not the doctors. So the money will go for newer and better drugs and riba will probably just fade one day as it probably should. Still, since most of us are currently on only two drugs -- Peg and riba -- it would be nice if more doctors here tried to at least emulate some of the Sweedish work, and especially look more into dosing based on riba plasma serum levels.
Well, that's a good night.
-- Jim
Are you on tx? I started getting dizzy, disoriented, had a lack of appetite, and diarrhea. That's what sent me to the doctor, that's when I found out I had HCV. These sypmptoms were due to compromised liver function, I was a grade 3, high stage 3, with fatty liver. I also had a high level of ammonia.
They were OK to say my symptoms were due to my compromised liver, yet I doubt that alot of doctors would attribute it to HCV. Peace
They were OK to say my symptoms were due to my compromised liver, yet I doubt that alot of doctors would attribute it to HCV. Peace
Pr. Edward Island is right next to St Pierre, the only differents is St. Pierre is part of France. What a small world.
Stay well, BB
Stay well, BB
"...Spent about 1 to 20 hrs a day in bed."
Should have read 12 to 20 hrs...
Tomorrow when I see my doc to discuss my 12wk pcr. The first thing on my list is how to fix my cracked hands, which though exasperated by tx, is probably 80% work related.
May even ask him about help with my sleep patterns..talk about a busted brain...I hate mornings so much, that I never go to bed early, thus putting of getting up, despite knowing I'll wake every couple of hours. Might need some brain surgery there.
Don
Should have read 12 to 20 hrs...
Tomorrow when I see my doc to discuss my 12wk pcr. The first thing on my list is how to fix my cracked hands, which though exasperated by tx, is probably 80% work related.
May even ask him about help with my sleep patterns..talk about a busted brain...I hate mornings so much, that I never go to bed early, thus putting of getting up, despite knowing I'll wake every couple of hours. Might need some brain surgery there.
Don
Thank you for your kind post and the link to the other site. It sounds like what I've been looking for. I'll admit, I'm pretty green when it comes to all of this, I don't really understand what the blood tests mean but I have researched his symptoms and tried to find the best way to manage them. I have a feeling I'll learn and if nothing else hopefully learn enough about it to someday be able to help explain this disease to some other poor blindsided soul. Good should always come from bad and I do believe that when the Drs. step out, God will step in and provide exactly what's needed. Just like you guys, a blessing to me already and we're strangers! God's work.
As a MALE I of course consider myself a better driver than most. LOL and therefore any diminishing of my driving abilities is more than offset by the higher starting mark. :) But seriously -- actually I was sort of serious -- I've noticed some diminishing of skills due to perhaps brain fog but very little.
Where I have noticed a difference, however, is both in stamina and nerves. Long trips are out for me because I just don't have the energy and even short trips in heavy traffic can take a toll. Needless to say when you get tired and energy runs out, you become a worse driver.
As far as my nerves go, there have been times when I was hair-trigger crazy which I attribute to the treatment drugs since I rarely lost my cool in traffic prior to treatment. The incident that sobered me up was when I found myself several months ago shouting at the top of my lungs at two ladies who appeared to be in their late 70's. After that, I consciously try and drive slower, in a more relaxed fashion, and not take road things as seriously, no matter whose fault it is. If someone wants to cut in front of me -- be my guest.
-- Jim
Where I have noticed a difference, however, is both in stamina and nerves. Long trips are out for me because I just don't have the energy and even short trips in heavy traffic can take a toll. Needless to say when you get tired and energy runs out, you become a worse driver.
As far as my nerves go, there have been times when I was hair-trigger crazy which I attribute to the treatment drugs since I rarely lost my cool in traffic prior to treatment. The incident that sobered me up was when I found myself several months ago shouting at the top of my lungs at two ladies who appeared to be in their late 70's. After that, I consciously try and drive slower, in a more relaxed fashion, and not take road things as seriously, no matter whose fault it is. If someone wants to cut in front of me -- be my guest.
-- Jim
I know what your saying about the fatique and all. I do figure most of my physical problems are attributable to genetics and whatever life I led, including sober years where I still put it through the mill physically. But as far as hep related symptoms, the fatique was blatantly to me...Okay this is not normal fatique of aging and beating myself up physically. That was before I even knew I had hep c.
I also had MONO, the October after I finished HS at 17. Spent about 1 to 20 hrs a day in bed. Right before that I'd been running every morning, working all day and working out at night, biding my time to reach 18 and go in the service. If energy was air, I was a popped ballon.
As best I can figure, although there are many possibilities, I go this in 75 w/my only use of a needle. But as much as 15 years ago the the fatique was already progressing. Getting worse yearly even throuigh 7 years of a healthy lifestyle. Although it seems to effect me about 1/2 the day versus all day with mono. Again this disease, as life, is so frikkin random ...But the fatique was the A#1 factor in should I treat and maybe have a shot at having some energy.
I want to be clear of the virus, would love to one day believe I'm not infectious, but what really got me on tx is the hope of one day having the energy to do what I want, when I want as best as it fits with the responsibilities of life in general. Right now I manage it as best I can, but I don't want to be controlled by the fatique, and it seemed headed that way.
Don
I also had MONO, the October after I finished HS at 17. Spent about 1 to 20 hrs a day in bed. Right before that I'd been running every morning, working all day and working out at night, biding my time to reach 18 and go in the service. If energy was air, I was a popped ballon.
As best I can figure, although there are many possibilities, I go this in 75 w/my only use of a needle. But as much as 15 years ago the the fatique was already progressing. Getting worse yearly even throuigh 7 years of a healthy lifestyle. Although it seems to effect me about 1/2 the day versus all day with mono. Again this disease, as life, is so frikkin random ...But the fatique was the A#1 factor in should I treat and maybe have a shot at having some energy.
I want to be clear of the virus, would love to one day believe I'm not infectious, but what really got me on tx is the hope of one day having the energy to do what I want, when I want as best as it fits with the responsibilities of life in general. Right now I manage it as best I can, but I don't want to be controlled by the fatique, and it seemed headed that way.
Don
Agree with Jim that distance would be a problem. I'm OK for an hour or two at a clip, but wouldn't want to try much more. My problem is I forget where I'm going, or sometimes even where I've been. I'll get halfway to the hardware, and forget what I'm after, or even where I'm headed. Honestly. It's a trip. Stoned without the buzz.
I also try to be more conservative than I normally would. I err on the side of caution in deciding whether to slip into traffic, or duck through a yellow light these days.
I also try to be more conservative than I normally would. I err on the side of caution in deciding whether to slip into traffic, or duck through a yellow light these days.
Being on tx has limited my driving alot. The headaches and pain make it uncomfortable, so if I don't have to I don't go. Also the dizziness and general confusion may make it risky at times. Peace
this is the sight i believe you are mentioning calif, and i would agree it is a great sight for support when you have cirrhosis and face transplant...these folks over there know ALOT about both and are extreemly kind.
sweetpea, i am so sorry to hear about your fiance. sounds like you guys could really use the support on the sight i will list below. you will find alot of spouses posting for their loved ones there cause they are just too sick with cirhosis to post. i'm sure you will get the love and great advise there you need.
they will probably ask you to post his last blood test in full then they will ask you some other pertainaint questions and give you some stuff to read and catch you up on it all. they are truely great over there...there is a ton of info and the host "imkindly" will help you with all your questions...
i pray for your fiance and for the rest of your lives together. i pray for his healing. he is so blessed to have you in his life...he will need your love and support as he goes through this stuff...its great he has you to go through it with...
here is the website to go to;
http://forums.delphiforums.com/liverfailure/messages
sweetpea, i am so sorry to hear about your fiance. sounds like you guys could really use the support on the sight i will list below. you will find alot of spouses posting for their loved ones there cause they are just too sick with cirhosis to post. i'm sure you will get the love and great advise there you need.
they will probably ask you to post his last blood test in full then they will ask you some other pertainaint questions and give you some stuff to read and catch you up on it all. they are truely great over there...there is a ton of info and the host "imkindly" will help you with all your questions...
i pray for your fiance and for the rest of your lives together. i pray for his healing. he is so blessed to have you in his life...he will need your love and support as he goes through this stuff...its great he has you to go through it with...
here is the website to go to;
http://forums.delphiforums.com/liverfailure/messages
For those who finger point with ambiguity, who spend many hours of their lives preaching on message boards all over the net as to how people should conduct their thought patterns, with a obvious, below the surface desire to be the ultimate referee on everything and anything, take a deep breath, relax as in essence you are in fact creating an illusion that only fits your version of events, which in fact may be very flawed. Most people on any given day have an awareness as to exactly what their posts mean and reasons for the style and effect their posts will have on others. This form of communicating may not the precise and approved method of communicating that some here advocate. Really you are not that important, get used to it. Or well, bottom line, tough beans! One here uses the term
I'm 20/24!!!!!!!!! I had a single IVDU incident, at 22 in 1980 in Venice CA w/a coupla neophyte junkies, both of whom got something. I was just starting college and by 1988 I was a lawyer. But I am increasingly ADD, irritable, depressed-ish (respond to AD nicely), always half-assed. I always thought my severe disorganization was a character issue, then recently thought maybe I had a frontal lobe deficiency, (that's where organization capacity is emerging in brain studies). Now I will give some to HCV, though I've always been like this, just older.
There is a fine ESLD/transplant forum that has been mentioned here several times. Does anyone have contact information? Until an answer comes in, perhaps you can find a link for them at janis7hepc.com. Darn, I really wish I could be more useful to you. It is so hard what you two are going through, unimaginably hard. I hope you'll keep talking, posting, until the folks who are closer to your experience check in. There's a strong family of survivors here who can understand what you're going through and will give you strength when you need it, if you need it. But I can tell you're a fighter and you're not going to let him slip through the cracks. Liver disease does NOT get the upper hand around here.
MIKE SIMON, NEW SOUJOURN, are you reading?
MIKE SIMON, NEW SOUJOURN, are you reading?
I'm just stunned by your post, I mean by the accuracy of your description of this disease. For the record I just referred to the effect of the treatment. It's a both/and, however.
To be honest I'm also shocked by your story. I've mostly been away from the board, sucking up fresh air after a long run--and certainly not one of the longest runs on this board, either--but jeesh, to know the exact moment of infection and then feel the deterioration that fast? Hideous. I, on the other hand, have been in slow mo with it for 16 years or so. Hit me was I was on the verge of forty, had an actual case of mono, never fully recovered from it, figured out why that was when I was dx'd with Hep C a few months later. This was in the spring of 1990, right after Chiron released its test. I never returned to 100%, and maintaining 70% was serious holistic work. That's not all that bad, in the larger scale of things, but who wants to settle for damage?
I don't know your background, being both an 'oldtimer' and new here. Are you medical? Needle acident? Ah, fuggit, it's none of my business. But that sounds like seriously rotten luck. This disease is seriously rotten luck. You're reminding me that it's time to get over tx burnout and back into a serious suppement regime. And reflexology, yes. Doing some home treatments. Treatment doesn't end with SVR. That's just the beginning of recovery, I believe. A lot of us will be shadow dancing with this virus for a long time. In a way Double Dose is right--it's an ongoing issue, although I prefer to see it more optimistically. But that's because I have a lot of experience with, and faith in alternative approaches. Still, what a struggle it is, what a diversion of energy.
To be honest I'm also shocked by your story. I've mostly been away from the board, sucking up fresh air after a long run--and certainly not one of the longest runs on this board, either--but jeesh, to know the exact moment of infection and then feel the deterioration that fast? Hideous. I, on the other hand, have been in slow mo with it for 16 years or so. Hit me was I was on the verge of forty, had an actual case of mono, never fully recovered from it, figured out why that was when I was dx'd with Hep C a few months later. This was in the spring of 1990, right after Chiron released its test. I never returned to 100%, and maintaining 70% was serious holistic work. That's not all that bad, in the larger scale of things, but who wants to settle for damage?
I don't know your background, being both an 'oldtimer' and new here. Are you medical? Needle acident? Ah, fuggit, it's none of my business. But that sounds like seriously rotten luck. This disease is seriously rotten luck. You're reminding me that it's time to get over tx burnout and back into a serious suppement regime. And reflexology, yes. Doing some home treatments. Treatment doesn't end with SVR. That's just the beginning of recovery, I believe. A lot of us will be shadow dancing with this virus for a long time. In a way Double Dose is right--it's an ongoing issue, although I prefer to see it more optimistically. But that's because I have a lot of experience with, and faith in alternative approaches. Still, what a struggle it is, what a diversion of energy.
Is it just me or do others think of this place and remember the days when we was in school? Where you had the popular kids and the class clowns. There was always a certain amount of kids that wanted to be in the "cool group". So no matter what the "cool group" said they always agreed or laughed at anything that was said, even when they didn't agree. They just wanted to be seen with the "cool dudes". And when the "cool dudes" would pick on or make fun of the other kids they would jump right in with them.
Now here we are middle aged adults and some still act the same way, you would think we would have outgrew that stage and could think for our selfs.
Now here we are middle aged adults and some still act the same way, you would think we would have outgrew that stage and could think for our selfs.
Has anybody noticed they are a much worse driver than they used to be?
I've noticed I'm much less thoughtful and really have to admit I almost got in a doozy of an accident today (thank God for great reflexes) doing about 80 on the highway on the way to work. Forget ME I could have wiped out a bunch of people on the way. THAT I could never live with.
I really think it's brain fog induced driving disabilities...it's like I'm not as focused or concentrating enough even when I am trying to.
Just when I think I've had enough fun......
I was wondering if anybody else noticed this.
Strator - I will be curious to see what your doctor says. PLEASE let me know.
I've noticed I'm much less thoughtful and really have to admit I almost got in a doozy of an accident today (thank God for great reflexes) doing about 80 on the highway on the way to work. Forget ME I could have wiped out a bunch of people on the way. THAT I could never live with.
I really think it's brain fog induced driving disabilities...it's like I'm not as focused or concentrating enough even when I am trying to.
Just when I think I've had enough fun......
I was wondering if anybody else noticed this.
Strator - I will be curious to see what your doctor says. PLEASE let me know.
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