Ultrasound questions...scared me

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DanIsWorried
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/4/2009 3:26 PM (GMT -7)   

Hi all. I'm new to this forum but wanted to try and get some advice and help.

I have had Hep C since the age of 16 due to blood transfusion, I am now 48.

I have never drank alcohol or taken any type of drugs and for the most part eat semi healthy.

Over the years just doing blood work, everything seems to be fine.

Over the last year or so, and every now and then, I have a slight pain under my right rib cage, liver area. Seems to come and go and usually if I eat something fatty, that is when I notice it.

Well I decided I better go see a doctor again. He recommended some blood work and some other tests including CT and Ultrasound, etc. My girlfriend was in the room as well while they were doing the Ultrasound test. I didn’t want to look at the monitor because I was afraid of what I might see and would self-diagnose myself...and that would equate to certain death!!! lol

But my girlfriend was watching the monitor. When we got home, she did tell me that she saw some blotches or black looking marks on my liver, so needless to say I am getting scared and freaking out.

The strange thing is I feel perfectly fine, no symptoms really at all, except for that little pain every now and then.

So my question is what does this mean? And what would those be showing on my ultrasound? Scares or cirrhosis?

And my other question is. Is there any alternative treatment to battle this disease be sides interferon? I read somewhere that Naomi Judd got rid of her Hep C using an alternative type of treatment. Would anyone know or have heard of any success stories using other methods? I am horrified about the side effects of interferon.

 

I think really I just need to talk to someone because I am pretty scared right now. Seeing is I won’t know the results from my tests, because I will have the CT scan next week and won’t have the results probably for another week or two.

 

Any advice or help would be greatly appreciated - Dan confused


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/4/2009 3:47 PM (GMT -7)   

Hi, Dan!  Welcome to the forum.  I also have hep C, diagnosed in '93.  I have had tons of CT scans, ultrasounds, and MRIs.  I did have liver cancer, as a direct result of hep C, but have been cancer free for nearly 2 yrs.  I believe I contracted C in '68 or '69.

First of all, unless your g.f. is a radiologist, don't get upset by what she thinks she saw.  Just take a deep breath and resolve to wait until you hear the actual results.

If she really did see some spots, they could be scarring/fibrosis.  Of course, since you've had hep C over 30 yrs., anything is possible.  Where are you being treated/seen?  If this turns out to be cancer, I suggest you go to Mayo Jacksonville, Rochester, or Phoenix.  Another excellent treatment center is M.D. Anderson in TX.

As for treatment, the standard treatment now is a combination of interferon and ribaviron.  It is generally one injection a week.  The Ribaviron is taken orally.  This combo is generally done for nearly a year.  However, there is a new treatment in trials that adds a 3rd drug and is only taken for 24 wks.  The 3rd drug also makes the side effects less severe.

My best adivice to you is to read the older posts here.  Also, read the threads that have Education in the title.  You will learn a lot.

Above all, calm down.  Hand the results to God.  Only when you know what they are will you be able to do anything about them.

Peace and prayers,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 5/4/2009 4:50:11 PM (GMT-6)


DanIsWorried
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/4/2009 3:56 PM (GMT -7)   
Thanks Connie and I am glad I am hearing from someone with the experience behind them even though it is experience I'm sure you didn't like getting.
 
Did you go the route of interferon? And if so what was your experience with it. The main side effect that is making me nervious is the depression part of it. Depression runs in our family and have had two or three fights with it and I can personally tell you that was tough within itself.
 
Connie, I was also wondering if you have heard, tried or have heard someone doing any natural or alternative treatments for Hep C. I did some research and see so many wonderful promises, but I like proof.
 
Thanks for responding...I feel a little better now.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/4/2009 4:17 PM (GMT -7)   

Dan, I tried the interferon when I was first diagnosed.  At that time, it was interferon injections only, 3 x a week.  I self-injected in my thighs--not the most pleasant thing for an ex-addict.  Anyway, the first time I was on them for about 6 wks. and my white count plummeted.  I was reduced to 2 x a week with a reduced dosage.  The white count was still too low.  So the doctor took me off treatment.  I tried it again a couple of months later, with a different gastroenterologist.  This time, I took myself off after 4 weeks for the same reason as previously.  That is why I didn't even bother with the "combo," since it still has interferon in it.  My hepatologist at Shands hasn't pushed me to do the treatment.  I didn't have any side effects aside from the low white counts, but I wasn't on it very long.  I do know that many people who take treatment go on antidepressants during that year.  That's something for you to consider.

As far as alternative treatments, I've heard some good things said about low-dose Naltrexone (requires a prescription) and also ALA (a supplement.)  I want to discuss these with my hepatologist.  I would caution you not to take anything w/o your doctor's knowledge and okay...especially not until you know exactly what is going on with your liver.  What kind of doctor are you currently seeing?  If not a hepatologist, I would encourage you to get one.

 


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DanIsWorried
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/4/2009 4:35 PM (GMT -7)   
At the present I am only seeing my family doctor. I do not have insurance so he gives me a good discount just to see him. I'm in Miami and the University of Miami has a great Hepatology department, but it is super expensive just to see a hepatologist...like 400.00 just to shake my hand.
 
They have at the University a special program called "Nieve patients". They basically use patients to test new drugs. The drugs are interferon and the at3 thing? and then a third drug (the one they are testing in conjuction with). I think they are looking for people with Hep C that have never had any type of treatment so their studies are pure. I know it is testing for FDA approval for the large pharm companies. I'm not sure if I want to go that route as either, that all just seems a little too scary for me.
 
I will look in to the Naltrexone and the ALA. What does the ALA stand for?
 
I would hope there may be some other people wanting to chime in about alternative treatments. I used Cassie's tea when I was first diagnosed and seem to make the liver count better, but did nothing for the viral load. So still looking.
 
And Connie are you completely cured from the cancer? And what about cirrhosis or any other damage to your liver because of your condition? How is that affecting you if at all?

DanIsWorried
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/4/2009 5:08 PM (GMT -7)   
Connie, I looked up Naltrexone and see that it says..."The main use of naltrexone is for the treatment of alcohol dependence". Is that what people are using it for or for an actual alternative? I do not drink or anything like that, so not sure if this is something I would need.
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/4/2009 6:12 PM (GMT -7)   

No, this is an actual use for the drug.  As I said, you need a prescription from a doctor.  ALA is, I think, aminolevulinic acid, and is sold in health food stores.  However, I again caution you against taking anything that your doctor hasn't okayed.  You could do yourself more harm than good.

It sounds like the U of Miami clinical trials are with the 3-drug combo I mentioned.  I lived in Miami for 10 yrs.  At that time, I had neither money nor insurance.  I went to Jackson Memorial.  I believe you could see a hepatologist there for free or on a sliding scale according to income.  Yes, it's a zoo and probably not something you want to do on a regular basis, but it might be a good idea to take your test results and make an appt. with a hepatologist there for a consult.  Get his input on your current condition.  Are you working?  Have you applied for SSI or SSD?  How about Medicaid?


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


DanIsWorried
New Member


Date Joined May 2009
Total Posts : 5
   Posted 5/4/2009 6:32 PM (GMT -7)   
I am working, but my job has cut back a lot of my work and I am making next to nothing now. I do not know how to apply for SSI or SSD. What do they stand for? And I have never tried for Medicaid.
 
You never mentioned how you are doing with your liver. I know you are cancer free, but what effects are you having if any?
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/4/2009 8:31 PM (GMT -7)   

Dan, thanks for asking.  To cure the cancer, they removed the entire rt. lobe after shrinking the tumor from it's original 11.5 x 12 cm size.  They shrunk it with chemoebolization and a study drug, TheraSphere.  The tumor had metastasized, but the treatments shrunk it back into the original tumor.  To be sure to get all the cancer, though, they felt they had to take the rt. lobe.  The only way I know something is not right is the overwhelming fatigue I have, no matter how much I sleep.  That's the hep C and cirrhosis symptoms.  I've been lucky enough not to have encephalopathy.  I had some ascites (fluid in the belly) and edema (swelling) of the extremities for awhile, but that has cleared up with diuretics.  I have blood work and scans at Mayo every 3-4 mos.

Okay, SSI (Supplemental Security Income) and SSD (Social Security Disability) can be applied for online.  Go to SocialSecurity.gov.  Then look for the applications for those.  Apply for both.  Actually, when you apply for SSD, they will automatically evaluate you for SSI.  SSD is based on your work history.  They go by your best 10 years and you will have to have about 10 yrs. of full time work.  You also have to be considered permanently disabled.  That's another reason you need to see a hepatologist.  Get all the medical records you can for backup...all the way back to when you were first diagnosed with hep C.  It also helps if the doctor will state that you are unable to work.  However, if you feel able to work, it may be too soon to apply.  You would get Medicaid if you qualify for SSI.  Medicare doesn't go into effect until after you've been approved for SSD...and it's a 2-year wait from the time you apply.

Wait and see what the results of your blood work and scan are.  If not good, perhaps you should start application for SSD/SSI.  At any rate, you can look up the SS site online to get your questions answered.  I get SSD and Medicare, and because I'm low income, Medicaid pays my Medicare monthly premium and my prescription drug premium, which is a big help.

Good luck!
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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