Aa
New & scared
Hello all, I have just tested + for Hep C on July 11th & boy am I scared. Here's some background...
I had open heart surgery in 1979 when I was 6 which was a corrected Tetralogy of Fallot ( My PCP thinks this is when I was infected..I'm now 35)
I had an terrible allergic reaction to penicillin in, I think it was 1982, which put me in the hospital w/ 107 degree fever..no joke, my mother still has the pad of paper that she kept track of my rising temps & I remember taking a bath in ice water & rubbing alcohol to lower my fever.
I've been hit by a car in 1995 & thrown 15 ft up & 15 ft forward which caused lower back & left knee injury, but no broken bones & I'm very mobile. (Minus the pain you'd never know it happened.)
I had a SVT attack in Nov, 2006 that sent my heart into a 250 beat per min rampage & now have a Implanted Cardiac Difibulator.
During a 8 month ongoing investigation into some abdominal pains I was having, they found a hole in my esophagus, congenital but ended up being a 1 inch deep dead end hole made of stomach tissue that is producing gastric acids in the center of my esophagus which is too risky to remove so it's monitored & I'm on Pantoprzole to reduce acid as not to erode the esophagus.
After still no real answer to abdominal pains & a routine check of my liver due to cholesterol meds, my PCP said liver enzymes were high. So he stopped my cholesterol med & found it lower, but he wasn't satisfied, so he tested me for Hep & there you have it.
Now, I don't even know my genotype or my viral count yet. Nor, do I have any info on liver condition. I made an appt. w/my Gastroenterologist but can't get to se him until 7/29. I'm going crazy just these past 3 days. I am obviously a fighter & WILL beat this or at the very least control it to the ripe old age of 102 ;) but how much more can i take before I become a bigger hypochondriac than I already am (with good reason though, I feel) I've alread started to put myself on a low fiber low residue diet to give my digestive system a break, & I'm considering taking Milk Thistle, but would like my Doc to know 1st due to other meds ie. Diovan & Metoprolol
Now to top it all off I think I may have found melanoma on both my shoulders after a severe blistering sun burn during the 1st week of June! After the skin peeled now my shoulders are freckled w/irregular shaped beauty marks that were never there.
I have to go see a Dermatologist, but I don't know how to handle explaining to other Doctor that I have tested + for HCV. What's the protocol when seeing other doctors or 1st time visits to new doctors & what about Dentists? I'm fully expecting to be treated like an alien from now on (which may be ok at 1st since I'm a Sci-fi Fan) but I really need some support. I have only told my immediate family, my boss (who's best friend has HCV & he's been very supportive...lucky there) & my room mate who is my best friend of 35 years. I can now tell he is a bit uncomfortable living here but is trying so hard to be supportive & not show his fear. And lastly, I now feel I will never find the right woman & one willing to start a family with..I know that's probably not the case, but I was having a hard time prior to all this finding a good relationship in the 1st place!
Well, I know I've babbled a lot, have a lot to be great full for, & I'm sure many of you here have heard or dealt w/worse...but just typing this all out has helped a bit. I hope to find some peace & comfort here & wish all here good health & happier days ahead.
I had open heart surgery in 1979 when I was 6 which was a corrected Tetralogy of Fallot ( My PCP thinks this is when I was infected..I'm now 35)
I had an terrible allergic reaction to penicillin in, I think it was 1982, which put me in the hospital w/ 107 degree fever..no joke, my mother still has the pad of paper that she kept track of my rising temps & I remember taking a bath in ice water & rubbing alcohol to lower my fever.
I've been hit by a car in 1995 & thrown 15 ft up & 15 ft forward which caused lower back & left knee injury, but no broken bones & I'm very mobile. (Minus the pain you'd never know it happened.)
I had a SVT attack in Nov, 2006 that sent my heart into a 250 beat per min rampage & now have a Implanted Cardiac Difibulator.
During a 8 month ongoing investigation into some abdominal pains I was having, they found a hole in my esophagus, congenital but ended up being a 1 inch deep dead end hole made of stomach tissue that is producing gastric acids in the center of my esophagus which is too risky to remove so it's monitored & I'm on Pantoprzole to reduce acid as not to erode the esophagus.
After still no real answer to abdominal pains & a routine check of my liver due to cholesterol meds, my PCP said liver enzymes were high. So he stopped my cholesterol med & found it lower, but he wasn't satisfied, so he tested me for Hep & there you have it.
Now, I don't even know my genotype or my viral count yet. Nor, do I have any info on liver condition. I made an appt. w/my Gastroenterologist but can't get to se him until 7/29. I'm going crazy just these past 3 days. I am obviously a fighter & WILL beat this or at the very least control it to the ripe old age of 102 ;) but how much more can i take before I become a bigger hypochondriac than I already am (with good reason though, I feel) I've alread started to put myself on a low fiber low residue diet to give my digestive system a break, & I'm considering taking Milk Thistle, but would like my Doc to know 1st due to other meds ie. Diovan & Metoprolol
Now to top it all off I think I may have found melanoma on both my shoulders after a severe blistering sun burn during the 1st week of June! After the skin peeled now my shoulders are freckled w/irregular shaped beauty marks that were never there.
I have to go see a Dermatologist, but I don't know how to handle explaining to other Doctor that I have tested + for HCV. What's the protocol when seeing other doctors or 1st time visits to new doctors & what about Dentists? I'm fully expecting to be treated like an alien from now on (which may be ok at 1st since I'm a Sci-fi Fan) but I really need some support. I have only told my immediate family, my boss (who's best friend has HCV & he's been very supportive...lucky there) & my room mate who is my best friend of 35 years. I can now tell he is a bit uncomfortable living here but is trying so hard to be supportive & not show his fear. And lastly, I now feel I will never find the right woman & one willing to start a family with..I know that's probably not the case, but I was having a hard time prior to all this finding a good relationship in the 1st place!
Well, I know I've babbled a lot, have a lot to be great full for, & I'm sure many of you here have heard or dealt w/worse...but just typing this all out has helped a bit. I hope to find some peace & comfort here & wish all here good health & happier days ahead.
No melanoma. Dermatologist did say my "skin is warning me" which I found that kinda funny, but at least bit of good news. (Man have I become the King of paranoia now).
Now, if I can make it to 29th to see my gastroenterologist. It's strange, the pains I've had for 8 mo. have seemed to worsen since my dx on the 11th. Lets hear it for panic attacks ;)
Now, if I can make it to 29th to see my gastroenterologist. It's strange, the pains I've had for 8 mo. have seemed to worsen since my dx on the 11th. Lets hear it for panic attacks ;)
I just had to add the "melanoma" issue for a cherry on top of the cake. No, I don't think it really is & it's the least thing on my mind, but I'm having it looked at anyhow, knowing my luck ;) I burn a lot in that area & always blister (I never learn apparently) So, I figure, now that these new spots appeared It's better to be safe than sorry.
Thanks again to all for chiming in with advise & support. Everyone here seems like great people & you have all calmed me down dramatically. I have an appt w/my gastroenterologist on the 29th so I guess I'll go from there. What scares me is that my right side seams to hurt more now that I know about this. Let's hear it for the power of thought! That's ok, power of thinking works both ways...I'm planning on kickin' HCV's A$$! :) - I'll keep you all updated.
...And Botz, I hope your feeling less hopeless each day. I have to say I do feel a lot better mentally since I joined this forum. P.S. run a bit around the block for me, I could use the exercise. ;)
Thanks again to all for chiming in with advise & support. Everyone here seems like great people & you have all calmed me down dramatically. I have an appt w/my gastroenterologist on the 29th so I guess I'll go from there. What scares me is that my right side seams to hurt more now that I know about this. Let's hear it for the power of thought! That's ok, power of thinking works both ways...I'm planning on kickin' HCV's A$$! :) - I'll keep you all updated.
...And Botz, I hope your feeling less hopeless each day. I have to say I do feel a lot better mentally since I joined this forum. P.S. run a bit around the block for me, I could use the exercise. ;)
Also just as a side note. You will still get great answers to your questions here but you may find even more answers on the hep C side
http://www.medhelp.org/forums/hepatitis/wwwboard.html
(this is Hep C social) and if you want expert advice (none of us are doctors we just slept at a Holiday Inn express last night) you can go to http://www.medhelp.org/forums/show/272
And ask Dr. Dietrich.
I hope this helps
http://www.medhelp.org/forums/hepatitis/wwwboard.html
(this is Hep C social) and if you want expert advice (none of us are doctors we just slept at a Holiday Inn express last night) you can go to http://www.medhelp.org/forums/show/272
And ask Dr. Dietrich.
I hope this helps
U said: Now to top it all off I think I may have found melanoma on both my shoulders after a severe blistering sun burn during the 1st week of June! After the skin peeled now my shoulders are freckled w/irregular shaped beauty marks that were never there.
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This would be a first. Melanoma 1 month after a sunburn. Ahhhhh....no. Put that worry out of your mind and stick to the real problems at hand. Hang in there. Not the end of the world.
-----
This would be a first. Melanoma 1 month after a sunburn. Ahhhhh....no. Put that worry out of your mind and stick to the real problems at hand. Hang in there. Not the end of the world.
WWWHHHHOOAAAAA,
I'm sorry I'm new 2 just a couple of days and afraid.Beleive me I'm not making fun here
but after reading your post I feel like running around the block followed by a couple of laps in the pool!!!
I can tell you this I found out I tested positive for anti bodies a couple days ago and got on line a basket case,got lucky and found this forum.
I can't beleive the people here,It's 1:33a.m. and I can't sleep,i'm nowhere near the acceptance stage however because of the support,information and caring encouragement
of the folks here i'm not in a constant state of hopeless despair.
The first thing they told me was calm down,I'm not going to drop dead tommorow and it's
not the end of the world.I asked questions a lot of questions and everyone i,ve dealt with gave me the answers they could.If they did'nt have the answer they assured me somebody out there probably does. They gave me was hope when I was feeling hopeless and more importantly I don't have to do this alone.
So hang in there like I said I'm real new at this I have no answers,but stick around I am.
Besides anybody with a Resume like you have has got SURVIVOR written all over him
something tells me your going to be ok!
Good Luck
Botz
I'm sorry I'm new 2 just a couple of days and afraid.Beleive me I'm not making fun here
but after reading your post I feel like running around the block followed by a couple of laps in the pool!!!
I can tell you this I found out I tested positive for anti bodies a couple days ago and got on line a basket case,got lucky and found this forum.
I can't beleive the people here,It's 1:33a.m. and I can't sleep,i'm nowhere near the acceptance stage however because of the support,information and caring encouragement
of the folks here i'm not in a constant state of hopeless despair.
The first thing they told me was calm down,I'm not going to drop dead tommorow and it's
not the end of the world.I asked questions a lot of questions and everyone i,ve dealt with gave me the answers they could.If they did'nt have the answer they assured me somebody out there probably does. They gave me was hope when I was feeling hopeless and more importantly I don't have to do this alone.
So hang in there like I said I'm real new at this I have no answers,but stick around I am.
Besides anybody with a Resume like you have has got SURVIVOR written all over him
something tells me your going to be ok!
Good Luck
Botz
" as far as your Milk Thistle question goes. Don't waste your money, I haven't come across any studies that shows it's effective"
FWIW:
http://www.ahrq.gov/clinic/epcsums/milktsum.htm
"Possible benefit has been shown most frequently, but not consistently, for improvement in aminotransferases and liver function tests are overwhelmingly the most common outcome measure studied."
http://www.ncbi.nlm.nih.gov/pubmed/8225695?dopt=Abstract
"These results show that IdB1016 may improve LFTs related to hepatocellular necrosis and/or increases membrane permeability in patients affected by CAH."
http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=hstat1.chapter.29128
"* Four of six studies of chronic alcoholic liver disease reported significant improvement in at least one parameter of liver function or histology with milk thistle.
* In three of six studies that reported multiple outcome measures, at least one outcome measure improved significantly with milk thistle compared with placebo, but there were no differences between milk thistle and placebo for one or more of the other outcome measures in each study.
* Three studies evaluated the effects of milk thistle on viral hepatitis. The acute hepatitis study showed no improvement in liver function. Improvement in aspartate aminotransferase and bilirubin was significant in the study of acute hepatitis. Two studies of chronic viral hepatitis showed improvement in aminotransferases with milk thistle in one and a trend toward histologic improvement in the other.
* There were two studies of patients with alcoholic or nonalcoholic cirrhosis. In one study, milk thistle showed a positive effect, but no data were given. In the other, milk thistle showed a trend toward improved survival and significantly improved survival for subgroups with alcoholic cirrhosis or Child's Group A severity. "
FWIW:
http://www.ahrq.gov/clinic/epcsums/milktsum.htm
"Possible benefit has been shown most frequently, but not consistently, for improvement in aminotransferases and liver function tests are overwhelmingly the most common outcome measure studied."
http://www.ncbi.nlm.nih.gov/pubmed/8225695?dopt=Abstract
"These results show that IdB1016 may improve LFTs related to hepatocellular necrosis and/or increases membrane permeability in patients affected by CAH."
http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=hstat1.chapter.29128
"* Four of six studies of chronic alcoholic liver disease reported significant improvement in at least one parameter of liver function or histology with milk thistle.
* In three of six studies that reported multiple outcome measures, at least one outcome measure improved significantly with milk thistle compared with placebo, but there were no differences between milk thistle and placebo for one or more of the other outcome measures in each study.
* Three studies evaluated the effects of milk thistle on viral hepatitis. The acute hepatitis study showed no improvement in liver function. Improvement in aspartate aminotransferase and bilirubin was significant in the study of acute hepatitis. Two studies of chronic viral hepatitis showed improvement in aminotransferases with milk thistle in one and a trend toward histologic improvement in the other.
* There were two studies of patients with alcoholic or nonalcoholic cirrhosis. In one study, milk thistle showed a positive effect, but no data were given. In the other, milk thistle showed a trend toward improved survival and significantly improved survival for subgroups with alcoholic cirrhosis or Child's Group A severity. "
Welcome to the forum. you have come to the right place. there are so many great people here who are going through Hep C. You will find a lot of great support and a lot of great information.
Wow, you sure have had your fair share of it. I think the most important thing to do is take a deep breath and relax.
If your doctor has not done so already, the next step is to find a good gastroenterologist or hepatologist that is knowledgeable in Hep C. They will have more thorough tests performed and see where you are with all of this. Then they can tell you what your most appropriate course of action is.
Here are a couple of great websites that are full of GREAT information if you want to read and learn more about this disease.
http://www.janis7hepc.com/
http://www.hepcchallenge.org/
They are both excellent resources. The Caring ambassadors site has a free down loadable book called "choices" that is informative. Just remember to take small bites of information at a time because there is a lot to digest.
As far as milk thistle goes I do not agree that it is a waste of money only that it will not cure you. There is evidence that it can help with liver inflammation and there are clinical trials being conducted with it. Having said that I would not recommend you run out and buy it or anything else. Go see a reputable Hep C doctor and see where you are as far as disease progression first. From what you described you may have had this a long time (open heart surgery in 1979) they did not isolate what this was until 1989 and did not begin testing the blood supply until 1982.
Again Welcome!
Come back here often and ask questions if you do not understand or just need someone to talk to.
Wow, you sure have had your fair share of it. I think the most important thing to do is take a deep breath and relax.
If your doctor has not done so already, the next step is to find a good gastroenterologist or hepatologist that is knowledgeable in Hep C. They will have more thorough tests performed and see where you are with all of this. Then they can tell you what your most appropriate course of action is.
Here are a couple of great websites that are full of GREAT information if you want to read and learn more about this disease.
http://www.janis7hepc.com/
http://www.hepcchallenge.org/
They are both excellent resources. The Caring ambassadors site has a free down loadable book called "choices" that is informative. Just remember to take small bites of information at a time because there is a lot to digest.
As far as milk thistle goes I do not agree that it is a waste of money only that it will not cure you. There is evidence that it can help with liver inflammation and there are clinical trials being conducted with it. Having said that I would not recommend you run out and buy it or anything else. Go see a reputable Hep C doctor and see where you are as far as disease progression first. From what you described you may have had this a long time (open heart surgery in 1979) they did not isolate what this was until 1989 and did not begin testing the blood supply until 1982.
Again Welcome!
Come back here often and ask questions if you do not understand or just need someone to talk to.
Thanks both for your input & thoughts- they do help. I know I may be being a bit mellodramatic about all of this but it's so fresh in my mind, it's running wild (my mind that is)
Dang...so, what you're saying is...if you were a horse, they'd just shoot ya?!? You are only the second person I've ever heard of with Tetralogy of Fallot! Unfortunately, you're not the second person I've heard of with hep C...After what you've endured in your life, if you decide to treat for the hep c, it's a walk in the park for most. If you haven't, getting a liver biopsy done will tell you more of the condition your liver is in...first and foremost, make sure you even have a viral load (a blood test that shows the actual virus present). You may just have the antibodies. (Some people- 20%- are able to fight off hep c completely when they first get it...) You have time. You are a survivor. (You should have your own island! HA!)
Breathe. People who have been through what you have are beautiful inside. There is always a soul-mate in the world for them...You'll be fine...the hep C won't be an obstacle if they are the right person...Take care.... ~Melinda
Breathe. People who have been through what you have are beautiful inside. There is always a soul-mate in the world for them...You'll be fine...the hep C won't be an obstacle if they are the right person...Take care.... ~Melinda
Welcome to the forum, you will get a wealth of information just reading all the posts and even into the archives. I haven't gone thru tx yet but I have an appointment tomorrow to find out more, hopefully I will get a start up date, but I know my doctor wanted to give me an untrasound. It seems like you have a whole lot of questions, don't worry this isn't a death sentence. It can be tx'ed and is often sucessful, as far as your Milk Thistle question goes. Don't waste your money, I haven't come across any studies that shows it's effective as far as stopping damage to your liver. It supposedly lowers your blood levels, but that is not proven, it's only related in testimonials. It certainly won't clear the virus, only tx of Peg and Riba will. As far as getting a lady, sure you will. HCV people get in relationships all the time, positive or not this isn't a STD or anything. Anyway it's late and I gotta get some Z's. Look at my profile to learn the acronyms. God Bless
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