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Old 05-23-2008, 08:31 AM   #1
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Scared to death - Hepatitis C

I recently started going to a new dr. and he did some routine blood work on me. My ALT and ALS were 15-20 points higher than normal. All other blood work was in the normal range. Earlier this week, he had me do a liver function test - as well as a CT scan to alleviate my worries about liver cancer. (I am a 6 year breast cancer survivor.) The CT scan turned out fine and no problems or masses were found on my liver or anywhere else. The ALS and ALT were much better - one was completely normal and the other was only 3 points higher than normal. However, it showed that I was reactive to antibodies for the Hepatitis C virus. (He said normal was less than 1.0 and mine was 2.7.) I have had no symptoms or anything. I have never been involved in any activity that would expose me to the virus - that I know of. No blood tranfusions, no drug activities, no knowledge of being sexually involved with someone who was a carrier. I did read that 10% of people have no idea how they could've gotten it. The dr. is giving me a sensitivity test next Tuesday to see if I might have a false positive. The dr. told me it was treatable and not necessarily life-threatening - I assume he means with monitoring. I suppose the fact that it may have been discovered would be to my benefit though? Since it seems many people do not know they are carriers unless they experience symptoms or accidentally through routine blood work. My dr. told me it could be something as simply as eating at a fast food restaurant, where one of the employees might have had Hep C. I have never drank in my life either, do not smoke or do drugs. I exercise and try to eat right. I am not overweight. I have really scared myself by reading all the info. on the internet. I could not sleep last night. The medications sound pretty rough. (I was on chemo for my breast cancer almost 6 years ago and it was brutal.)

Also, I am confused about the chronic and acute Hepatitis C. Would you have symptoms with these? If it does turn out to be positive, what are the chances that I can have a normal life? Can treatment truly be effective in dealing with it? Do they automatically start you on medication if you have Hepatitis C? How common is a false positive? What should I expect if I am positive? Should my husband be tested for it? My 7-year old daughter? I'm very confused and scared. I suffer with severe anxiety as well, given my past history with cancer.

Any help or information would be greatly appreciated.

 
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Old 05-23-2008, 09:52 AM   #2
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Re: Scared to death - Hepatitis C

Hello Caitlyn,

I hope that you are coping with your recent diagnosis O.K. First of all, I will try to answer some of your questions. Hepatitis C is generally a slow disease, meaning that it takes a long time to do what it does to your liver. The first thing that you should know is that this is not a death sentence!

It is true that most who have hepatitis C do not experience any symptoms. In fact, I believe that I was carrying the disease for more then twenty years before I found out that I had it and I felt no stmptoms at all!!

I was diagnosed through a blood test at a health fair in the state where I live. This was the second year that I had taken this blood test. The first year showed nothing unusual at all, but the second time I took the test it showed elevated ALT/AST levels in my blood.

I was as surprised to find this out as you seem to be, although unlike you I was in one of the high risk categories since I used I.V. drugs early in my life. But thankfully, I moved past all of that many years ago.

As soon as I found out that I had this disease, I had my wife and my work companions get tested as a precaucion. They were all negative. From my understanding, the chances of another person becoming infected with hepatitis C through casual contact such as sneezing, caughing, touching or even sex is considered to be a very small risk factor.

Hepatitis B is considered to have a higher transmission rate through sex and hepatitis A can be contracted through contaminated food or water. There are however vaccines for hepatitis A and B.

However, people who use razors or the tooth brush of an infected person could potentially become infected. I have heard of the ten percent of people who have no idea how they contracted the disease but other then that, the method of transmission for the disease seems to be blood to blood. In other words, a drop of infected blood must somehow enter the blood stream of another individual before they can become infected.

As for the treatments, I did a four month combination therepy with Interferon and Ribavirin and since that time I have been clear of the virus meaning that I no longer carry an amount of the virus in my blood stream that can be detected by the viral load test. In other words, I was cured of the virus.

For me the treatments were a little rough, but manageable. If you do find out that you are positive, that is the time to make some tough decisions wich should include the advice of your doctor. One thing that I would find out if I were you is if your doctor has any experience with the virus. I found that my primary care physician knew very little about the virus other then what test to run to check for it.

He referred me to a liver specialist and this man DID have experience with the science involved with the virus as well as the treatments of it.

The main thing for now is to try not to worry to much until you have more test results. It is possible to live a relatively normal life with the virus especially considering your life style. Personally, I always believe that it is better to treat the disease as soon as possible but at the same time I understand why some do not wish to treat.

I also remember the internet as a scary place to gather information about the virus. That's the first thing that I did when I found out that I had it. Some sites tend to give the information as medical facts while others consider the human side of the whole thing and offer at least some encouragement.

As I understand it, acute hepatitis C means that your body tries to fight the disease off and if it succeeds in doing this then this is acute hepatitis C. If, on the other hand the body cannot fight off the disease within six months, then the disease is termed "chronic".

I wish you the best of luck in your future and want to remind you once again to try not to worry to much until all of the facts are in from your doctor.

Hope this helps a little!!

Chuck

 
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Old 05-23-2008, 07:41 PM   #3
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Re: Scared to death - Hepatitis C

I'm still sitting here, worrying myself sick. I have read all the posts on the Hep C message board that might apply to me - seeking some kind of helpful info.) Although I am married and have a child, I feel lost and helpless. The only things that I can possibly trace it back to would be when I had a port for my chemotherapy or the fact that my ex-husband was a phlebotomist and had a few accidental sticks. (It has been over 6 years and I have no contact with him, or info. that he might have Hep C.) While on chemo, I had blood taken weekly, 3 visits to the hospital due to infections from my low blood count, and several surgeries in which the port was utilized. I even called my oncologist's office to ask if they had tested me for Hep C. They said they would call me early next week and let me know but they did not think they had such a screening. Other than that, I would think I'd be at low-risk for having Hep C. Never in my wildest dreams would I have imagined something like this - just 6 years and 9 months after breast cancer. If it turns out I have chronic Hep C, I am extremely fearful of the medications/treatment. As I mentioned, I did horribly on chemotherapy - and had every possible side effect one can imagine. (My oncologist knows it was tough on me.) From what I've read, the medications can be brutal. How likely is it that I would be able to work and participate in my young daughter's life without feeling terrible from the side effects. She is my only child and means the world to me. I do not want to miss out on her childhood. Is it true that Hep C can be managed for years without medication - depending on what a liver biopsy showed. My CT scan turned out fine - "No focal lesions of the liver or biliary ductal dilatation or fatty infiltration." All my all liver functions from the second blood test turned out in the normal range - except 3 points high on the ALT. Is that encouraging? And, is a 2.70 on the Hepatitis C antibody terrible? (I know that 1.0 or less is the reference range.) I wouldn't think I'd have liver damage or disease at this point with those statistics. I am really needing reassurance. I don't know if I can make it through the weekend without some positive feedback or encouragement. Please reply.

 
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Old 05-23-2008, 08:45 PM   #4
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Thumbs up Re: Scared to death - Hepatitis C

Caitlyn

I don't have Hepatitis but I am posting to encourage you. I know you are scared. Hang in there. My thoughts and prayers are with you.I hope you'll stay in touch.

Hugs Nadine

 
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Old 05-24-2008, 06:17 AM   #5
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Re: Scared to death - Hepatitis C

HELLO, DON'T WORRY IT SOUNDS LIKE YOUR LEVELS ARE OK. I HAVE HEP C GENO TYPE 1A FOR OVER 30YRS NOW AND JUST FOUND OUT 2YRS AGO, HAD NO IDEA OR SYMPTOMS. MY ALT AND AST LEVELS WERE 67& 69 AND MY VIRAL LOAD WAS 2.5 MILLION. THE DR. WANTED ME TO TRY THE Tx FOR 3 MONTHS BUT I SAID NO. I STILL DRANK A GLASS OF WINE OR A BEER EVERY NIGHT AND THAT'S A NO NO. I WAS GOING TO TRY A DIFFERENT APPROACH USING HERBS, SUPPLEMENTS AND EATING THE RIGHT FOODS THAT HELP WITH HEP C. I GO EVERY 6 MONTHS FOR BLOOD WORK. LAST NOV. 2007 MY VIRAL LOAD WAS 7.7 MILLION, AST 46, ALT 53. NOW THIS MONTH'S LEVELS WERE AST 54, ALT 49 AND MY VIRAL LOAD WENT DOWN TO 1,037,810 GO FIGURE I GUESS IT IS WORKING FOR ME. I POSTED SOME THINGS YOU SHOULD TAKE AND FOODS TO EAT. GOOD LUCK WITH YOUR DECISION, BUT BEFORE YOU GO FOR THE Tx DO YOUR HOMEWORK ON IT!!! TAKE CARE,
JOE

 
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Old 05-24-2008, 08:01 AM   #6
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Re: Scared to death - Hepatitis C

Hello again Caitlyn,

It sounds like the test results that you have recieved thus far are incouraging. As for the ALT/AST results dropping, that is good as it means that the virus is not as active or is not currently doing damage to your liver.

The real test that doctors use to monitor hep C is the viral load test. My viral load before treatment was 3.2M and I was told that this was not that high. As for treating for the virus, that really is a personal choice that you and your doctor must make. It could be that he agrees that there is no need to treat right away.

With your current life style it could be very easy to live with the virus rather then treat it in my opinion. I am not sure about the levels of the antibody test since my doctor elected to use the viral load test right away because I had already decided to treat.

I feel from my experience with treatments at least that it would effect your quality of life some during the treatments. The biggest problem that I had was the fatigue that I experienced as the treatments continued. The other side effects were fairly easy to manage with Tylenol and by staying hydrated.

I chose to treat because it was a good time in my life to do so and I figured that I might as well at least try while I could. But another thing to remember is that the side effects from treatments are different for everyone. I know of some people who never experienced any side effects at all, but that number is small compaired to the number of people who did have the side effects.

I would recommend that you continue to learn all that you can about the virus and then formulate a list of questions to ask your doctor when you see him next from that information and then go from there.

Another thing to remember is that you do have time! Even when hep C is very active, it takes many years before it does any significant damage to the liver in most cases. I carried it for at least 20 years and my tests showed no damage at all to the liver. I did have inflamation of the liver however.

So hang in there. There is a good chance that you can have a perfectly normal life with your family. There is one line that I have heard throughout the hep C world and that is that "most people do not die because of hep C but rather with hep C", meaning that for a lot of people, the disease never progresses to the point where it causes enough liver damage to cause death or lessen the quality of life before other medical problems do it first.

Another thing to consider form my understanding is that if the liver does develop scarring down the road that it is harder to treat and usually requires a longer treatment, the reason being that the meds have to get through the scarred tissues in order to reach the active virus that is undernieth it.

Also, as I remember when I was first diagnosed, the scariest part is when you first find out about it. Once we get over the shock, the fear of the unknown sets in and there is so much information out there on the web about this disease that it takes time to sift through it all and learn enough to feel comfortable with your choices.

But once the fear of the unknown is taken away, the journey becomes easier because it then becomes more familiar to you.

I wish you the best of luck in whatever you decide!

Chuck

 
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Old 05-24-2008, 11:05 AM   #7
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Re: Scared to death - Hepatitis C

Thank you so much. That gives me some encouragement. Due to the fact that I should be low-risk, I am praying that it was a false positive or that my body already dealt with it and I just have antibodies to show for it. I already have to monitor my body and take care of so much related to my health, that it just frustrates me I would have to deal with something else. And am I right that it is blood-bourne primarily - and not usually through sexual contact? Thank you again. I know I will eventually have peace. Part of the problem is that it is just bringing back so much trauma at finding out you may have something. I was only 31 when I found out I had breast cancer, had a 1 1/2 year old daughter, had gone through a divorce one year prior, had many financial debts due to my ex-husband's spending habits and my house was about to be foreclosed on. I have been through a lot. I guess being told you might have to deal with Hep C is still not as bad as a cancer diagnosis though,huh?

 
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Old 05-24-2008, 01:13 PM   #8
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Re: Scared to death - Hepatitis C

Hello again,

You are right about the fact that hep C does not transmit through sexual contact easily. My wife and I were sexually active during the entire time that I had hep C and she has tested negative for it.

Hep C is mainly transmitted through blood to blood contact such as sharing needles, using the same tooth brush or razor but is not contracted through touching, sneezing, caughing and so forth.

And I would have to agree very much that a diagnosis of hep C is much better then a diagnosis for cancer because with hep C, you have time to deal with it. Unlike cancer, hep C is slow as far as what it can do to a person.

And yes, I do believe that once you have all of the facts and know for sure whether or not you need to worry about it that you will find peace. It is the confusion that we all face at first that is the hard part. After that it becomes a committment to treat the disease or a committment to learn how to live with the disease. Or there could still be the best case scenario which is that your disease is not chronic in the first place.

Only time will tell the answer and after that you will be able to set your mind to work on the solution whatever that might be, and once you are on a clear course then the mind will simply make peace with it!!

Again, good luck!

Chuck

 
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Old 05-25-2008, 09:22 AM   #9
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Re: Scared to death - Hepatitis C

Thank you for your continued concern in my case. Over the weekend, I have had good times and bad times. I almost cannot stop myself from googling everything possible about Hep C. It is very disconcerting and depressing for the most part. Do you have any idea what weakly positive means on the Hep C antibody test? I was very curious to find out. From what I could find out, it sounds like anything less than 3.0. Mine was 2.7. Could that possibly mean I was just exposed to it and my body already deal with it? I need to stop googling it on the internet. It is only making me more stressed and scared. I think I will just stick with this board. I think reading too much about it is not helping.

 
Old 05-26-2008, 07:06 AM   #10
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Re: Scared to death - Hepatitis C

hey, it's not just vitamins, but the food you eat also. you could do a search and find out what's good and bad for hep c. here is a small list for you, hope it helps. i have geno 1a, with a viral load of 10 mil. i will try foods and vitamins before i take the poisons the drs want to give you!!

Foods to consider:
Dandelion greens, burdock root, mustard greens, black radish, apples and saffron, watercress, beets, parsley, artichokes, cherries, grapefruit, parsnips, endive, garlic, onion, chicory, carob, horseradish, kumquats, limes, quinces, grapes. Include artichokes in the diet, they protect the liver.
Lemon juice mixed with water, upon rising in the morning 30 minutes before eating and a teaspoon of olive oil (virgin cold pressed) has been shown to stimulate the production of bile.

Foods to avoid:
Saturated fats, meat, alcohol, hot sauces, spicy foods, fried foods, fatty foods, rich foods, salty foods, cow's milk and other dairy products, white bread, refined foods, processed foods, sugar and sweets, phlegm-forming foods, meat, ice cream, shellfish, coffee, caffeine, unpurified water and other foods that don't agree with you.
Trans-fatty acids, hydrogenated oils (margarine, vegetable shortenings, imitation butter spreads, most commercial peanut butters) oxidized fats (deep fried foods, fast food, ghee, barbecued meats)
Refined, simple carbohydrates: sucrose, white flour, processed foods.

MY VIRAL LOAD WENT FROM 10 MIL TO 1.5 MIL IN 8 MONTHS AND MY AST & ALT LEVELS ARE NORMAL. IV'E HAD HEP C GENO 1A FOR OVER 30 YRS.

 
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Old 05-27-2008, 11:30 AM   #11
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Re: Scared to death - Hepatitis C

Hello yet again,

Just saw your latest post. You are probably right about not continuing to study the virus for right now. Although I believe that it's a good thing to know your enemy, obsessing about it can at times do more harm then good. Especially before all of the facts are really in.

And yes, it is possible that you contracted the disease and that your body beat it on it's own as happens in a lot of cases. That is my hope for you. But the thing to remember is that even if the test results show a chronic infection, your tests thus far seem to indicate that you haven't had it for long. So liver damage is pretty unlikely in your case especially if the virus has not been to active.

And if what I believe is true then you could easily go the route that trying2B has suggested for now. If you choose that route, it is important to have your doctor on board with you to help you monitor the disease and perhaps help you to come up with a suitable diet and so forth.

Even if you don't treat right away in order to have your quality of life with your daughter, you could still treat down the road if you decide to. In the mean time my best recomendation is to do all that you can to help your liver. Ask your doctor about that the next time you see him or talk to him on the phone. I'm sure that he can help you with this.

Again, good luck!!

Chuck

 
Old 05-27-2008, 07:17 PM   #12
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Re: Scared to death - Hepatitis C

Once again, thank you for the information. It is very comforting to hear someone talk about the human side of it - much better than all the "pure" medical information that has no heart - and has actually served to worry and scare me more at this point. I saw my doctor today and totally broke down and cried almost the whole time. I kept asking about my results that I had gotten previously - and naturally, he couldn't tell me much I didn't already know. He did remind me it was not life-threatening, I would be okay no matter the results, and it was treatable. (Jokingly, he said he couldn't guarantee what I would or wouldn't have when I was 70.) We went over my last test results - the fact that my AST and ALT had dropped, my liver function tests were within the normal range, all my other blood work was fine, I had no symptoms, and the CAT scan showed no abnormalities. I am not overweight at all, drink only bottled water (never even been drunk and can't drink b/c it always upset my stomach), eat healthy most of the time, and try to stay active. I still feel blind-sided by this though.

As a team, the doctor and I decided to forgo the blood test today - now I'm wishing I had gone ahead and had it. (Since I had breast cancer, I had lymph nodes removed in both arms and have to get blood drawn from my foot. A PAINFUL process.) Instead, he referred me to a gastro doctor. Unfortunately, the appt. isn't until mid-July. (Since the gastro dr.'s office was just upstairs, I went to see if I could get an earlier appt. One of the receptionists was very rude to me. They had just gotten my labs faxed. They asked if I was a Hep patient and I said, "I don't know for sure yet." She looked at my report and said, "Yeah, these are pretty high" - the 2.7 on the antibody test - and went on to basically say I had hepatitis. It really upset me!!! I mean, she did not know anything about me. She didn't know if it could still be a false positive or that I had had an acute case and just had the antibodies from it. I did not get a good feeling from the office.

My sister-in-law had Hep C, cirrhosis and eventually a liver transplant. (She's 6 years past and going strong. She was even an alcoholic and engaged in many at-risk behaviors.) Anyway, I'm going to cancel with the gastro dr. and check to see if I can get in with her hepatologist instead. I may go ahead and have the re-test elsewhere. In the meantime, my dr. put me on Cymbalta. I am also taking Xanax for anxiety.

Also, on another message board - and info I found on a reputable internet website - this could quite possibly have a good outcome. Evidently, 2.7 on the antibody test is considered low positive. (Actually 1.0-8.0 is considered low positive - or weakly reactive, while anything above 8.0 is high positive.) Surely, that is in my favor. I would think if it were an active virus, it would be much higher. Or maybe I had acute case of Hepatitis.

I ask once again - for purposes of reassurance - if I do turn out positive for Hep C - it does not mean my life will be shortened or that it's terminal? I could realistically have a normal life and function? And it's typically a slow-moving virus? I need lots of prayer and encouragement. With my high anxiety and depression, I have already put my family through a lot. I mean, I know it's not the same at all, but I almost feel I am waiting for the biopsy results to see if I have terminal cancer. I guess it goes back to when I found out I had breast cancer - it's bringing back a lot of bad memories for me...I had no idea what I was in for when I was diagnosed initially. I made it through it though. And this isn't as bad as that. Am I right?

Thanks again for the support.

 
Old 05-28-2008, 04:39 PM   #13
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Re: Scared to death - Hepatitis C

Hello again,

First of all, a diagnosis for hep C is not really as serious as a diagnosis for cancer in my opinion. When I was first diagnosed, my first thought was that I might have had liver cancer since the initial diagnosis was based on elevated ALT/AST. That was one of the many scenario's that I created while I waited for my diagnosis. When I found out that it was hep C, I realized that this was the least serious of the two scenario's.

I also must tell you that I was almost completely misdiagnosed by my primary physician. I can guarantee you that the doctors in my area will not miss this kind of thing again as I launched an educational campaign in my area.

For this reason I feel that it would be in your best interests to find a doctor that has dealt extensively with the hepatitis C virus whether it be a gastro specialist or a hepatologist. Once you meet with a person who deals with this virus on a regular basis, I feel that the answers that you get from these people will be much more concise and realistic.

As I have mentioned before, these doctors may feel that there is no reason to treat at all at the present time. But I also feel that you should know that when I saw my hepatologist for the first time that he "Put the fear of God into me", meaning that he scared the heck out of me. He told me what I would need to do to get on a transplant list. As it turned out, I was nowhere near the need of a transplant and in my own opinion, niether are you.

Your situation is entirely different then your sister-in-law. You do not drink or engage in other things that can damage your liver. I have been told more then once that alcohol is like rocket fuel to this virus, meaning that it intensifies the activity of the virus somehow and causes it to begin damaging the liver. In your case this is not an issue.

You must remember that this is all my personal experience and things that I have learned over time and that your doctor or hepatologist is the one who will really have the answers but I really believe that if you work with your doctor or hepatologist that you will not loose your current quality of life and that you will not have a shortened life.

And again, I must remind you that in most cases, hepatitis C is a very slow moving disease, especially if, as in your case there is no alcohol or drugs involved. So hang in there! The number one thing to remember is that you have time!!

Feel free to continue communicating. I am here for you any time you need help. You see, not only do you need your doctors advice at this time but support is important as well. Especially from those of us that have been there!

Good luck!

Chuck

 
Old 06-03-2008, 01:14 PM   #14
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Re: Scared to death - Hepatitis C

I want to thank everybody for their information and prayers in my case. I had the RIBA test last Thursday and the dr. called with the results late yesterday afternoon. I was a false-positive - meaning I do not have Hepatitis C. Also, for anyone interested, I have some information after doing some research on high and low positives for the antibody test. If a person has a low-positive on their Hep C antibody test - <8.0 or <3.7 - depending on which test is used originally, their chances of turning up false positive are 86% - which is according to a study I read. (Mine was 2.7.) In other words, high and low positives on the antibody test can be very significant.

Thank you again for all the support. I have learned a lot through this journey. I will be praying for everyone diagnosed with Hep C or waiting to hear the results. I know the waiting can be grueling, stressful and difficult.

 
Old 06-06-2008, 09:13 AM   #15
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Re: Scared to death - Hepatitis C

Caitlyn,

This is the best news so far of any of the possibilities that we discussed over that long weekend! I am so very happy for you! It just didn't seem right that someone like you would be diagnosed with hep C.

I'm really sorry that you had to go through such a scary time for a bit but at least it's finally over!! Enjoy that time with your children free of the stress of worrying about hep C!!

Best of luck,

Chuck

 
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