Results from biop weren't good

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frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/16/2008 4:18 AM (GMT -7)   
In January I had an endoscopy, colonoscopy, and a liver biopsy completed.  It really didn't take very long for doc to call back with the results of the endo and colonoscopy, whcih were really pretty good.  Endo showed a small ulcer and colon showed the crohns was in remission.  All my enzyme levels have been ;wer than they have in very long time and have remained stable since June.  With all this and the fact that I have been feeling ok I truly believed things were going well.  Yesterday I recieved a call from the docs office with the results of my biopsy which shows chirrosis from my AIH.  I feel like the wind has been completely knocked out of me am totally numb and scared.  Honestly when I was on the phone I couldn't even think of any question, just said ok and hung up.  Now my head is full of things and have found it hard to even sleep.  Should I have expected this?   Is this the normal prigression with the disease even when things seem more in control?  Why are my enzyme levels stable and although still somewhat high )ASL and AST 82 and 74) lower than they used to be and this still happen? What happens next?  Should I be doing more for myself will it even help?  All these things and more just keep running through my head.  My next appointment isn't until March and the nurse didn't indicate that I should be seen sooner, of course at the time I didn't even think to ask.  I am not sure if anyone can really answer any of these questions, honestly I just needed to say them outloud. 
 
Thanks for listening
 
Lucy

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/16/2008 7:00 AM (GMT -7)   
Lucy I am so sorry about your results. I know they were not what you were expecting. But one thing I learned about liver disease from this site and my husband's journey is to expect the unexpected.
I do know that your can slow down the progression a lot. But not sure if you can stop it forever. Keep taking good care of yourself.
Maybe you can find some of the answers to your questions on the American Liver Foundation's website.
Are you under a Hepatoligist's care? If not get referred. You have probably seen me post it numerous times before but .....Take charge of your own healthcare. Get as educated as you can on it. You are hiring the doctors. Make them work for their money. Make them aware that you are knowledgeable enough to want good treatment and together set up a plan of action.

Lucy you have been a member of HealingWell for a while now. You can get through this. You know you have a lot of friends here. And that's what we are all here for. To get support and give it when we can.

Our thoughts and prayers will be with you.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 2/16/2008 7:05 AM (GMT -7)   

 

     Lucy : I understand how you feel. I was in the same position a few months ago. My liver enzymes had for the past 15 years  been normal. Then I ended up with encephalopaty, my ammonia levels were extremely high. Had biopsy done, and bad news , was told to get to a hos. or clinc for evel. because the biopsy showed I was a 4-4 end stage,cryptogenic liver cirro.. To make a very long story short. I have been for evel. and am now on a transplant list. I feel well at the time only the occational foggy days. I was told it could turn for the worst at any time from 3 months to 5 or 6 years even though my labs thus far have been in the normal range. My ammonia levels have gone from around 168 to less than 14 which is below norm. I am still very confused. Even after a year when it all started. The only thing I am doing is a very low protein diet. Not much meat only veg. and fruit. So far only encephalopaty and a bit of swelling which I am now on medication for . Do get the occational itching which I have been told can get very severe. Can no longer take any kind of meds. and am in a great deal of pain due to 3 types of arthritis. Can't have anything done or take anything without approval from transplant team, and my insurance co. Social Worker who is a nurse in charge of my case.  All I can say is just keep on reading . I'm told last labs were good and don't need to go again for labs for three months. Take care I've been told the stress is not good for us. eyes eyes   june


CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 2/16/2008 8:23 AM (GMT -7)   
Sorry to hear you both are struggling so. I wish only the very best.

A biopsy is the only real indicator of liver damage. Us folks struggling with liver disease need to know our LFTs can be completely normal & we can still have cirhossis.

Take care.

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/16/2008 5:02 PM (GMT -7)   
Thanks to all for listening to me. It helps so much just to know you are not alone.

Pink Grandma- thanks so much for your understanding words. I do have a hepatologist and a GI. Unfortunately my hep doc is at Cleveland Clinic so the biopsy was done here due to insurance. At my last biopsy I had the slides sent to Cleveland to be evlauated at their lab and I think I am going to do the same thing this time just to have another opinion. I don't think that they are wrong here its just I wouild like my hep doc to be able to see the results from his own lab. I am going to continue to try and educate myself and see how i can take more charge of this disease.

June= I am so sorry that things are not going so well for you. It is so hard to imagine that things appear almost normal and then out of nowhere things have progressed. I am thrilled that you are on the list and will keep you in my thoughts and prayers that you will get a new beginning very soon. Stress is very hard on all of us, those that have liver disease and those who care for us, it is all so overwhelming.

Cary- You are so right about eveyone being reminded that even though our LFt's can appear normal things may not be as they seem.

Again thank you all for your positve thoughts and prayers. I will be praying for each of us too.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/16/2008 5:28 PM (GMT -7)   

Lucy, I am also very sorry to hear of your results.  However, you have been given some excellent suggestions.  Find out just how bad the cirrhosis is.  I had always been told I had no cirrhosis; however, when the right lobe of my liver was removed last May due to cancer, a biopsy was done on the left lobe and it was found to have "mild cirrhosis."  So apparently there are stages.  I wasn't told of anything that can be done to halt the progression, but I've been using common sense and eating very nutritiously.  I don't eat much meat, and I've been eating lots of fruit and veggies.  Also am making soups from scratch and drinking a lot of water, which I never used to drink.  I feel really well now...not even as exhausted as I felt prior to surgery.

I had blood work and CT scans done last week, and will meet with my surgeon and my hepatologist next Thurs. for results and plan of care.  I don't even know if I'll be a candidate for hep C treatment with the diagnosis of cirrhosis. 

Be good to your body and take really good care of yourself.  Try not to worry, and as Pink Grandma said, educate yourself and ask questions.

And please do come back here to us to vent and share.  We are all pulling for you.

My prayers are with you and all who suffer from liver disease, and those who care for loved ones with the disease.

Hugs,

Connie


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/17/2008 10:38 AM (GMT -7)   
Lucy, I am so sorry that you received the news of cirrhosis. Take the advice of all the people here. They have been very helpful to me. As you already know, they are a group of wonderful, caring people. I will keep you in my prayers
Butterflythree
 
There is always hope!


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/18/2008 5:35 AM (GMT -7)   
Thanks to all of you for your support and prayers. I am going to call my hepatolgist today and see if I can have an earlier appointment. Have been writing down my questions so am having somewhat of an empowered moment, however am feeling like I am ona rollercoaster where my emotions are concerned. I have been reading alot and trying to educate myself on this new road. Sometimes it has been so overwhelming but I know I can't put my head in the sand. Am certainly not ready to surrender in this war so fighting is the only option. Please continue to keep my in your prayers.

Lucy

CaryF
Veteran Member


Date Joined Nov 2007
Total Posts : 505
   Posted 2/19/2008 7:51 AM (GMT -7)   
Hi All,

Hep 93 - you are so right about good diet & extra hydration. I don't know that they can slow disease progression but can sure give us some days when we feel much better. I drink more water than I ever thought I could and I know my liver loves the benefit of the extra help flushing of my entire system.

Best, Cary

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/19/2008 4:54 PM (GMT -7)   
Connie

I will be keeping positive thoughts and prayers for you with your upcoming doctors appointment. I wish for you the best treatment that you can have at this time. I have also been reading a lot and it appers you are tight there appears to be stages. I am awaiting a call from my doc so I can hopefully move my appoinmtent up so I can ask these kinds of questions. I have red where protiens are hard for your liver to process and lessing things that make the liver work harder is important. So am going to try and adjust my diet accordingly. If anyone has any good sites on health liver foods please let me know.

Keeping all in my thoughts and prayers.

Lucy
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