CT scan?

Hi All - Back again for help. I was in the IDEAL study. Relapsed between week 24 and 48 (although I went through all 48 weeks of tx). Went in for a follow up with Dr. Kwo and he asked if I am stage 4. I am supposedly stage 2. He stated that my spleen was enlarged and scheduled a CT scan to be performed "within the week". I'm going in on Sunday morning. Has anyone ever heard of a CT scan to determine stage of fibrosis? I am worried sick that he is thinking cancer. I am also experiencing pain in my right side, which is new. HELP!!! Any advice?

[FLAGIRL54]

Hi Everyone,
I was recently diagnosed with autoimmune heptatitis. I am very scared and do not know much about the disease. In addition I have also been diagnosed with diabetes and I have been HIV+ for sixteen years. I am very tired all the time. I currently took a leave of absence from my job.
I had a liver biopsy and am waiting for the results.

[silverangel]

Just read from a previous thread...UND from your 24 wk PCR!!!!
Congrats!!!!!!! Silver

[Upbeat]

Ct can be used to some extent to determind liver inflamation (inflammation). Its more precise than a ultra sound. A lot less invasive than a biopsy. At the same time it can be used to detect a host of problems. Biopsy is the gold standard. However a ct can't hurt.
                                                  
                                                        Ron

[NYgirl]

Thanks so much!  I haven't seen you around too much lately - how are things treating you?

[NYgirl]

I thought the catscan was used to determine organic problems like tumors and cancer not for fibrosis -

Best of luck I don't know anything about spleens but it sounds like you've been putting up some fight and getting kicked at every corner.  Eventually it HAS to be your turn right?

[can-do-man]

Did Doctor Kwo do a AFP blood test? That would be the first thing Dr. Kwo would have done if he thought there  was cancer. If he did do you know the results?

[can-do-man]

Do you have a gallbladder? The pain in the right side could be from that..  That could be why the ct scan. Good luck to ya.

[FLAGIRL54]

Hi Everyone,
I was recently diagnosed with autoimmune heptatitis. I am very scared and do not know much about the disease. In addition I have also been diagnosed with diabetes and I have been HIV+ for sixteen years. I am very tired all the time. I currently took a leave of absence from my job.
I had a liver biopsy and am waiting for the results.

I am panicking! Please help!

[can-do-man]

Sorry you seem to have alot going on. Most of us here have Hep C. Hope your seeing a hepatologist. Heres a link you can copy and paste in your browser. Might help answer some of your questions. Best of luck to you.

http://digestive.niddk.nih.gov/ddiseases/pubs/autoimmunehep/index.htm

[tulsatime]

Hi, I Had a ct scan. It told them alot about the cirrhosis like if the liver is uniform in size, if there is fatty infiltration. They look at your spleen, liver, galbladder, pancreas, and kidneys. My spleen and liver are both enlarged. I am stage 4. Don't worry about it being cancer cause they do them for a lot of reasons not only to see cancer. good luck

[FLAGIRL54]

Thank you for responding. Sometimes it helps talking to people in similar situations. The emotions and confusion can many times be as bad as the disease itself.

[silverangel]

I've been around...lurking. LOL
Things are pretty good. Sx are mild, or maybe is just doesn't seem so bad now that I had UND for week 12! At least now I know it's slaying that bad-ss dragon! I think I'm still in shock, knowing how bad my numbers were, also having stage 4 from my BX. It's like...can it really be true??? What is the % now that I've cleared it at week 12? Shot #15 last night. Hbg is stable.
Lymph nodes are still enlarged...it's been 1 1/2 months now!? Who cares, I'm clearing the virus!
Hope all is well with you.
PS Like you, I've lost 40-50% of my hair so far, its long and thin, time to cut it!! Sylv

[NYgirl]

Yeah that hair situation is no fun.  I took off six inches of the length then realized the sides and tops were all cracked off too so I cut it sort of shaggy now it's a thin fine mess instead of long and thick. Oh well we just have to deal with it a little longer right?  As long as the results say UND, it's possible to deal!

I didn't get UND the first two PCRs so I had given up on this one...when the last two I just KNEW would be UND.  Shows you exactly WHAT I know and it ain't nothing! ;-)

I'm glad the sides have been good to you.  Are you are 1?  When all is said and done it seems our chances are really 50/50 - between viral breakthrough and relapse one is a LONELY number aint it?  Sounds like you are doing really well and tx is being good to you.  How much longer do you have to go?  I no longer really have a clue how long I will go - I was going to go to 60 at least but now with the thyroid thing I have no idea in the world.

Thank GOD I'm UND right now ... if I wasn't and got my thyroid result I would shoot myself - I feel like I traded in one disease for another!

I feel bad for all the people who walk around with this disease thinking...I'm fine my ultrasound came back fine no need to treat and they have no clue why we fight like we do.

Maybe...we are just obnoxious and don't really know it?

:)

[silverangel]

I'm geno 1a, 15/48.
Chow for now

[indyjo]

Back to the spleen and CT scan. See above..... When Dr Kwo checked, he palpated my right side - not my left. Isn't the spleen on the left side? Any thoughts?

[GoofyDad]

Well you did say he found spleen to be enlarged. Maybe because he felt it from way over on the right? Sorry, just kidding. ;-)

Declining liver architecture can cause upstream backpressure on the blood-flow through the organ. Thus platelets and white blood cells become sequestored in the spleen, causing engorgement. I don't think that in and of itself is normally a cause for much concern, but it is an indicator of liver problems. No doubt they will surely want to monitor the size of your spleen.

I have low wbcs and platelets, and the doc isn't too worried if they stay that way forever.

Best of luck to you.

[Snookmiester]

Sorry to butt in, but 6 month post tx lab results in, STILL CLEAR!!! Doc said, well, your labs are in.. Then there was silence. She said, well..everything looks pretty good, nothing abnormal or anything.. I said, you have got to be kidding me here.. Am I still undetectable or what? She says, oh yeah, your still clear!!!
Man, way to beat around the bush huh?

Six months post tx, and still clear!!!!!!!!! Just wanted to share the news, as looks like I won my battle with HCV! Wanted to says thank you also for EVERYONE at Medhelp, especially a few of the ole timers that helped me early on. You ALL nknow who you are!! I made it!

[jmjm530]

I think most of us panicked early on in the process. Heck, I've been treating for 54 weeks and often still panic about things :)

Since you have autoimmune hepatitis  co-infected with HIV, you case is more complex and your treatment may be different than most here. Hopefully, you have found yourself a hepatologist (liver specialist) who has a large caseload of co-infected patients. If not, you might want to shop around some before making any major treatment decisions. An excellent web site for HIV/Hep C coninfections is:

The Body: http://www.thebody.com/Forums/AIDS/Hepatitis/

They often answer your questions very quickly. You might want to address any questions/concerns to Dr. Douglas Dieterich, although I'm sure all the doctors on the site are very knowledgeable.

What you will find is that the more you learn about your condition, the less scary things will become. Another good site for information and patient-to-patient support is http://janis7hepc.com/

All the best.

-- Jim

[amommy]

Congrats :)  That's fantastic news!  We needed that uplifting post around here.  Go celebrate!

[fishdoc]

Snook.  Theres only one thing left to do.  Go fishing.  You earned it.  Again, if you wind up in FLETC (artesia, nm) , get a hold of me and I'll take you to lunch,
congratufuc&inglations!!

[GoofyDad]

Really good to hear your good news. Enjoy you Hep free life. You deserve it.

[dyce]

Good news to hear tonite. Something that we need around here . Have a happy hcv free life!

Dyce

[strator]

Snook-AWESOME. That is so helpful to hear. You've certainly battled hard on the front lines. It must be a beautiful view from where you are now. Enjoy every moment.
Don

[Forseegood]

hey, sounds like a nice long vacation is in order huh? you and the ole wifey? after all this mishigas, I'd sure go! hearty congrats!

[genedog]

you are the man snook i am sooooooooooooooooooooooooooooooooooo happy for you knew you could do it, have to go tell my wife

[can-do-man]

congrats, wishing you the best going forward

[FlGuy]

Great news. In two months I'll be up for my 6-month pcr.  Hopefully, your good news will come a little north in my direction.

[jmjm530]

Congratulations! It's been a longer journey for you than most and nothing like a very happy ending! Priceless -- but not at all surprising -- your account of the phone call with the nurse. Reminds me when I called up to get the results of my AIDs test many years ago. They put me on hold for about 15 minutes during which time my entire life was flashing in front of me -- figuring she was fetching the doctor to tell me the bad news himself. Then she gets on -- apologizes for taking another call -- and tells me my blood tests are negative. Still in a trance, I say -- then I don't have AIDS?" She says, "no, everything is normal". LOL. Congratulations again, you deserve it. Any word on your new job yet?  OH...there's a new poster in this thread, FlaGirl54 -- case sounds a bit complicated. Maybe you can throw her Schiff's number or perhaps a local support group.

-- Jim

[beamishboy]

snook-good news!! thks for sharing!-now for some serious fishing,enjoy yr status!
Chevygal-Happy Birthday sweet lady!!! how's it feel to be a 30something?? Enjoy Your Day

[mikesimon]

I am so thrilled for you snook! You certainly fought hard and long to get here and it couldn't have happend to a nicer guy. I wish you good luck and good fishin'. Take care of yourself. Mike

[can-do-man]

Happy birthday girl, anything special i can do for you? Maybe a full body rub down? Have a good one.... Ruff Ruff

[dave the lathe]

Hi ,know clapham a bit .met a fellow in barnet hospital just before christmas ,he was hep c and came from clapham ,he said he was landscape gardener ,is that you ...
Dave

[dave the lathe]

Hi ,i`m a newguy to the forums ,i have auto immune hep . they only just caught it in time ,in england i had to wait over a year with full symptoms before i got my first medication ,doctors seem pretty vague when i ask them how much damage there is to my liver ,a biopsy suggest extensive cirrosis (cirrhosis) ,(why is all this med stuff so hard to spell !)and they tell me i am stage five ,i have seen you folks talking about stages and wondered what it means . english hospitals are reluctant to send people for expensive scans unless strictly needed ,i have had ultrasound and xrays but no ct scan .if i thought i would help i would pay for a scan even though i have little money now that i am ill .will a ct scan tell how much liver i have remaining ,thanks in advance for any replies ,

ps its not the hospitals that dictate a poor health servise ,its govenment underfunding ,the doctors have given me a new lease of life with steroids (60 mg prednisolone and 100 mg azathioprine)
am i am gratefull for that .
Dave uk

[Forseegood]

okay, hands down, you've got the best screen name here...least in my book....used to hang out in the Clapton Common area in London, know it? anyway, welcome to the board...always good to see a Brit around here! Lots of knowlegable, caring people here, welcome!

[Forseegood]

hey, Happy Birthday!!! mind telling us what it is! JUST KIDDING!!! ha ha, anyway, hope you have or had a fun day!

[dyce]

HAPPY BIRTHDAY!!!

Dyce