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Avatar universal

Does my family need to be tested as well?

Hi,

As I have posted earlier, I am HEP C positive with an active viral load. I have been diagnosed a couple of months back.
I had a surgery at the age of 5 months and a couple of people donated blood to me.My mother tells me that I had a severe reaction to the first donor's blood. The second donor was my father.

I am 30 years old and do not know when exactly I contracted the virus. I was diagnosed a couple of months back and after diagnosis I went to a hepatologist along with my father. The hepatologist advised that my parents be tested for the virus as well.

I have repeatedly asked my parents to get tested but they get extremely upset when I insist that they test.

It is true that that I have acted like a hypochondriac over the last 3 months. I had

My father has a fatty liver and his ultrasound showed mild inflammation. The GP brushed it off as something not to be worried about.

Now I have genotype 3 which is known to cause fatty liver. I am worried and want my parents to get tested,

However, their entire focus is on me getting cured.  I will start treatment in around a month's time.

I am not a selfish son. I am worried about their health too.

How do I convince them to get tested. I know this is not a fact based question.

But any suggestions would be appreciated.


Best Answer
1815939 tn?1377991799
It is very understandable that you would be concerned about your parents and the possibility that they could have Hepatitis C. This is especially true since you have Hepatitis C and do not know how you contracted it. It is possible that you had vertical transmission from your mother (during birth) or that you contracted Hepatitis C from your father via the blood transfusion. It is also possible that you contracted Hepatitis C from some other source, such as inadequately cleaned medical or dental equipment. In addition, the fact that your father has fatty liver and some inflammation would also be of concern.

It is true that your parents will have to make up their own minds if they want to be tested. However, at this time, they appear to be concerned about you and not themselves. It is possible that after you start treatment, and especially after you are cured, they may decide to get tested and, if infected, get treated.

One suggestion would be to have your Hepatologist (who suggested that they get tested) write a letter to them outlining the reason or reasons why they should get tested. Perhaps a letter from the Hepatologist encouraging them to get tested would convince them to get tested.

Best of luck on your treatment and for the future.
11 Responses
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Avatar universal
Yes, you do not have to tell your employer. I have been on leave for some time. I told him that I have a liver condition but did not specify that it is Hepatitis C


Test for it, Tulia. There's a pretty good chance you do not even have it.
Even if you have it, you don't have to tell it to your employer.

32 is a  young age, plus you are a woman. Estrogen slows down the progression of this disease. So, in the worst case, even if you have it, you might not have substantial liver damage.

And treatments are improving every day. If you are in the US, you would have a number of new treatments to choose from in the next one year or so. Not all of them have gruelling Sx.


Helpful - 0
2059648 tn?1439766665
Hi there.  I can see how many people can feel like you. Having gone through
the finding out, freaking out and all the fear associated with Hepatitis C.   It's true that it's a personal choice to get tested for Hepatitis C.   It's also, a personal choice to treat your Hepatitis C.   Just remember... that every day the fast track for Better Hepatitis C treatment continues on.  With a few years...you may just have to take a pill and this horrible Hepatitis C fear will be gone.   But in the mean time it's important that your Hepatitis C is monitored for changes.  I know this is hard.  I went through all kinds of quilt, stress and just plan fear.   There's a really good chance you don't even have it.  It's also a personal choice to tell your employer.  Think about it.  
Helpful - 0
1840891 tn?1431547793
You'd rather not know if you have a disease that can cause eventual liver failure if not treated (a really horrible way to die) but can usually be completely cured if diagnosed and treated in time? I can't make sense out of that. You have a very small risk, but if you consider yourself to have any risk then you are going to live your life under some degree of a shadow from that. Testing could remove that shadow by proving you healthy or if you do have the virus it could show you what you need to do to get healthy. Treatments are getting more effective and more tolerable as each year passes. I'd like to see everyone get tested and eventually see everyone get cured, because I want this whole virus to move into the realm of history only.
Helpful - 0
Avatar universal
My husband has Hepatitis C genotype 1a and he found out in 2010 that he has it.  We have 2 kids together and I got them both tested and they came back  negative.  I have not gotten myself tested though.  I choose not to test myself because I would rather not know.  I saw what happened when my husband found out and I saw how it has destroyed his life.  I don't want to know if I have it because I don't want to live my life knowing that I have a disease I can die from.  I would have to notify my work for the rest of my life about it and I would rather not deal with that.  It could also prevent me from future employment opportunities in the field of work that I'm in.  I make sure I'm safe and never have blood to blood contact with people.  If I cut myself, I use a band-aid, or if I have to deal with someone who has been cut, I make sure I'm wearing gloves.  Maybe your parents are feeling something along those lines where they would rather not know.  Maybe they just want nature to take its course with them.  I know that's not what you wanted to hear, but it is a possibility that this is what is going on.  I'm sorry to hear that you have the virus too.  May blessings come to you and your family during this hard time in life.
Helpful - 0
1815939 tn?1377991799
I need to clarify my above post. I was trying to reassure you but I may have not been very clear. I should say that an Ultrasound is helpful as an initial diagnostic test, although it does not show early and moderate fibrosis. It can pick up some of the changes to the liver that Cirrhosis causes. However, one should not rely on an ultrasound alone because the liver could be Cirrhotic and it may not show up on Ultrasound. Here is an excerpt that explains a bit more:

"Cirrhosis"

"Cirrhosis is the end stage of chronic hepatocyte injury, characterized by bridging fibrosis and regeneration. Sonographic findings of cirrhosis include changes in the shape of the liver, parenchymal inhomogeneity, and nodularity of the liver, notably at the surface. Intrahepatic vessels may be indistinct. Unfortunately, these signs are both insensitive and insufficiently specific for cirrhosis to be diagnosed reliably. Nevertheless, evaluation of the smoothness or nodularity of the liver surface with a high-resolution linear array transducer is useful.12–,14 Surface nodularity may be the only sonographic sign of cirrhosis. Although some studies have not confirmed the usefulness of evaluating surface nodularity,14 we think that the specificity for macronodular cirrhosis is good (Fig. 7⇓), although micronodular cirrhosis is often missed. Three-dimensional imaging of the liver when it becomes more robust may allow better visualization of the liver surface (Fig. 8⇓). The only other notable cause of surface nodularity is multiple subcapsular tumor nodules, usually from metastasis. Rarely, surface involution from treated metastasis or from liver necrosis with parenchymal collapse causes surface nodularity.

The caudate and left lobes tend to be relatively less affected by cirrhosis than the right lobe. This sometimes results in a small right lobe with left and caudate lobe hypertrophy, especially in hepatitis B. Ratios comparing the size or volume of the caudate lobe with that of the shrunken right lobe have been used to diagnose cirrhosis.15,16 These ratios are not always useful, however; a large series revealed sensitivity of 43% and accuracy of 79% for the caudate-right lobe ratio.17

Color Doppler sonography may show portal vein flow reversal or portal collaterals, prompting the diagnosis of portal hypertension. Flow reversal or portal collaterals may be the only finding indicating severe liver disease in a patient with otherwise normal findings. Conspicuously enlarged and tortuous hepatic arteries are sometimes shown on CDS in cirrhotic livers (Fig. 9⇓). This finding, similar to “corkscrew” arteries seen angiographically, probably occurs because of truncation of arteries from cirrhosis-related liver atrophy, coupled with the increased arterial flow18 that occurs when portal venous flow decreases. These enlarged hepatic arteries usually have higher velocity (frequency shifts), usually with aliasing, compared with normal hepatic arteries. Similarly enlarged arteries may occur with portal thrombosis, portal vein flow reversal, and portosystemic shunts. Cirrhosis often causes narrowing of the hepatic veins with loss of the normal phasic waveform on duplex studies (Fig. 10⇓).

Cirrhosis is the most common cause of portal hypertension. Finding portosystemic collaterals or portal vein flow reversal may prompt diagnosis of unsuspected portal hypertension and cirrhosis or may reinforce it when suspected. Sonographic evaluation of portal hypertension includes evaluation of the portal venous system and a search for portosystemic collaterals. The normal main portal vein measures slightly more than 1 cm in diameter. It has been suggested that a portal vein diameter of more than 13 mm indicates portal hypertension but is not always useful because of variation in portal vein size related to respiration and changes in patient position.19 Although portal vein size is not useful in diagnosing portal hypertension, a lack of respiratory variation (an increase during inspiration and a decrease during expiration) in size may be useful in diagnosing portal hypertension.18 Normally, blood flows toward the liver (hepatopetal) in portal veins. Reversed (hepatofugal) flow, although often associated with collaterals,18 may be the sole indication of portal hypertension. Other portal flow abnormalities include bidirectional flow and, rarely, nearly static blood flow. Sonographic contrast agents can be useful in aiding the detection of flow in the main portal vein and other hepatic vessels. The most common collaterals are left gastric (coronary) and paraumbilical (recanalized umbilical) veins (Fig. 11⇓). Left gastric vein collaterals, although by far the most frequent portosystemic collaterals, are often difficult to image because of their deep location in the lesser omentum. Paraumbilical veins are easier to image because they are superficial. They arise from the ventral tip of the left portal vein and usually flow caudally through the ligamentum teres, where they communicate with superficial collaterals. Other types of portal collaterals occur, including retroperitoneal, splenorenal, splenoretroperitoneal, short gastric, and omental. Some collaterals cannot be detected because of overlying bowel gas. "

http://www.jultrasoundmed.org/content/21/9/1023.full
Helpful - 0
1815939 tn?1377991799
While an Ultrasound is not a good gauge of mild to moderate fibrosis stages, it will normally show if the liver is Cirrhotic. So a normal Ultrasound at least shows that you probably don't have Cirrhosis.

Many people with Hepatitis C do have low Vitamin D levels (more so than in the general population). Ask your doctor to check your Vitamin D level. If it is low, the doctor should give you a prescription for Vitamin D. You could wait until you are seen at the specialty hospital if the other doctor is not willing to do this.

Viral load fluctuates from day to day so the difference between the tests is not really that significant. The VL is much more important after you start treatment because it is used as a gauge of how well you are responding to treatment.

Best of luck.
Helpful - 0
Avatar universal
And yes, I did a viral load test again. It is at 2.3 million down from 4.1 million when I was diagnosed two months ago.

Is the difference significant?
Helpful - 0
Avatar universal
Thank you all. Its almost therapeutic talking here.

I am about to visit a super specialty liver hospital in India in a week's time.

I have not had a biopsy or a fibroscan so far. And I am sure the doctors there would prescribe one of these two. I am wondering what my stage of fibriosis would be. Thoughts are floating in my head. God forbid, what if my liver is not in good shape. Would I be able to get married then?


Till now I was feeling relatively at ease (My ultrasound had shown normal liver). After conversing with people on this forum, I realized that ultrasound does not give a very good indication about the condition of liver.

Its stuff like these that is bothering me.


I also talked to one of the hepatologists (not at the super specialty hospital) about Vitamin D supplements. He says he does not prescribe them as it is a not a part of treatment protocol. Its just research and not a guideline.

I have read some previous posts about how Vitamin D improves chances of SVR. A part of me wants to start taking Vitamin D supplement before I start treatment.

Its just a lot of emotions going through my head.

Helpful - 0
1840891 tn?1431547793
I agree with Will. Perhaps once you've completed your treatment they will be inspired to take better care of their own health. One can hope!
Helpful - 0
Avatar universal
Congrats on you looking after trying to cure yourself of HCV and that you have suggested that your parents get tested because you are worried for their health is understandable ,however they must be the ones to come to the conclusion that getting tested would be the right thing to do for  their personal health

Good luck with the upcoming tx....
Will
Helpful - 0
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