Biopsy question (experiencing brain fog and fatigue)

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pohiki
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   Posted 2/26/2010 12:30 AM (GMT -7)   
I left my computer on the first post without realizing I hadn't changed my subject to biopsy question- sorry.
I'm new to this forum and site, so first, I want to just say hello to all.
I discovered I had hep c maybe just a few years ago but I've linked it back to a transfusion (double) at the beginning of 1980 or so. So I've had it for a long time. Anyway, I was hospitalized a for extreme low white blood count and felt I was going to die. This was due to a reaction I had to sulfide drug (shortly after discovering I had hep c).. perscribed for a kidney infection. Suffice it to say, they ran every test..ultrasound, ct ..and it was confirmed there was no cirhosis. 
 
I've never had a biopsy but can anyone tell me if this is the only way you can actually know at least for sure? 
I've been making changes along the way as I'm still learning like I'm sure many of you are.  I don't smoke and rarely have a drink. 
I guess this is enough for now.
Thanks in advance-  
Pohiki 

Pink Grandma
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   Posted 2/26/2010 11:05 AM (GMT -7)   
Hello pohiki and welcome to HealingWell. I am sorry that you have been diagnosed with Hep C . But I am glad you found us. As far as the answer to your question . Testing has come a long ways. My husband had cirrohsis, they diagnosed it through testing not biopsy. But I keep hearing that biopsy is the definitive test.

Since you have Hep C and it is eventually going to start damaging your liver if it hasn't all ready. I would definitely stay away from alcohol period. Even in moderation is not a good thing. Alcolhol to a damaged liver is like throwing gasoline on fire. It's too dangerous.

We have an educational thread in our resource folder at the top of our forum. It has a lot of good information. If you haven't read it yet, it's a good place to start.

Take care.........thoughts and prayers..........
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.


hep93
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   Posted 2/26/2010 11:59 AM (GMT -7)   

Welcome to the forum, Pohiki.  I totally agree with PG about the alcohol.  As for the cirrhosis, I was biopsied right after hep C diagnosis in '93, and there was no cirrhosis.  However, in 2005, I was diagnosed with hepatocellular carcinoma and had many different scans and blood tests.  None of them revealed cirrhosis.  It wasn't until the left lobe was biopsied in '07, at the time the rt. lobe was removed, that cirrhosis was diagnosed.  So it really is the definitive diagnostic tool.

If you are not under the care of a hepatologist, you should be.  Also, eliminate beef from your diet and keep salt to a minimum.  Increase your intake of fresh fruits and veggies.  Drink filtered water and green tea.  All these dietary measures will help you feel better.  You might also consider treatment for your hep C.

Hugs,

Connie


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


pohiki
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   Posted 2/26/2010 1:27 PM (GMT -7)   
Wow..thank you Pink Grandma and Connie for your encouraging and warm response!! Very grateful to of found this site and your knowledge!
Ya, before I knew I had the hep..(I'd been searching for answers)..why was my stomach always so messed up?!! Why the brain fog and fatigue- the latter of which only got worse within the last five or six years- maybe a modest estimate? Then I remember taking an evening walk, after a couple glasses of wine; (shortly before the discovery was made) I recall both a feeling of being relaxed..(effects of the alcohal)- but strangely hungover at the same time!! I knew something was wrong. I don't have a desire for alcohal anymore (which is good)..but then you could say, many of the things which were passionate to me have sadly faded like the summer flowers. Interesting about the biopsy! Thank you! I suspected that? I was told they found nothing..but I went back to look at my records at the hospital and will share that when do a double check. Regards, Pohiki-

**David**
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Date Joined Nov 2009
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   Posted 2/26/2010 5:18 PM (GMT -7)   
pohiki, My first biopsy didn't show cirrhosis. Less than a year later another one did. The first one wasn't done well and the specimen was minimal. I ended up going to another doctor. The second biopsy was done, because it was obvious to my hepatologist that something was amiss with my liver and he was sure there was scarring. He was right. As you've been told twice (by the moderators), no alcohol! My PCP, when he diagnosed my Hep C, told me to quit and I did.**David**

pohiki
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   Posted 2/27/2010 12:05 AM (GMT -7)   
Hi to all of you-
David..somehow, this still amazes me..so, your saying you even had a biopsy then went back later to another doctor with yet another (biopsy)? which revealed you had scarring. Isn't pretty painful? Wonder why the small specimen..I mean it's not a small matter going through something like this. I don't rule out timing..there is such a thing- but wow. How are you doing now? What is your situation presently?
Regards, Pohiki-

pohiki
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Date Joined Feb 2010
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   Posted 2/27/2010 12:10 AM (GMT -7)   
Pink Grandma, how is you husband? You said he had Cirhosis? Again, thank you for your concern-

pohiki
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Date Joined Feb 2010
Total Posts : 17
   Posted 2/27/2010 12:17 AM (GMT -7)   
hep93 said...

Welcome to the forum, Pohiki.  I totally agree with PG about the alcohol.  As for the cirrhosis, I was biopsied right after hep C diagnosis in '93, and there was no cirrhosis.  However, in 2005, I was diagnosed with hepatocellular carcinoma and had many different scans and blood tests.  None of them revealed cirrhosis.  It wasn't until the left lobe was biopsied in '07, at the time the rt. lobe was removed, that cirrhosis was diagnosed.  So it really is the definitive diagnostic tool.

If you are not under the care of a hepatologist, you should be.  Also, eliminate beef from your diet and keep salt to a minimum.  Increase your intake of fresh fruits and veggies.  Drink filtered water and green tea.  All these dietary measures will help you feel better.  You might also consider treatment for your hep C.

Hugs,

Connie

Hello there Connie. I'm just looking at these dates (as well as trying to navigate around) ..so then doesn't it also depend on where the biopsy is taken? I don't have insurance..so I'm a bit in the dark but this isn't going to stop me from learning all I can. Thanks, Pohiki-



**David**
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   Posted 2/27/2010 9:32 AM (GMT -7)   
Pohiki, I had to know for sure. The gastro who did the first biopsy waffled and said it was no big deal. He tried 3-4 times and then got less tissue than he wanted. It was a big deal to me, so I went elsewhere and had a second. This one showed definite scarring and a lot of it. Neither of the biopsies was painful, though the first (screwed up) one took 13 hours, lying on my side. The second took a little over an hour. In both cases, most of that time was waiting after the "take" to be sure there wasn't bleeding.

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 2/27/2010 11:30 AM (GMT -7)   
Pohiki, it's best to have a good doctor performing the procedure and a great radiologist interpreting the results.  However, any competent GI and radiologist does this procedure hundreds of times a year.  The first time, I had no medication whatsoever prior to the biopsy and developed an excruciating backache immediately afterwards.  All they had in the surgical area was Demerol.  I was waiting for a bed and turned it down at first, but after an hour of terrible pain I gave in and asked for the Demerol.  After that, I was okay.  I had to stay in the hospital all day, laying on my side on a rolled up towel to prevent bleeding.  This was in '93.  In 2007, for the 2nd biopsy, I was already under general anesthesia for the lobectomy and didn't even know I'd had a biopsy until the results were shared at my follow-up visit some weeks later.
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


pohiki
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Date Joined Feb 2010
Total Posts : 17
   Posted 2/28/2010 11:45 AM (GMT -7)   
Hello to all.
Well, this is interesting David. Unreal..I'm not surprised but I'm sorry you had to go through all that! It would be good to know where I was at right now..but as I said, I don't have insurance ..(wouldn't even know where to begin at this point) and it's evident even with my own experience, it's costly trying to get to the bottom of it while its seems to just elude you.
Aside from this, I would like to know how your doing at this time?
Demerol.. I remember being on that for a blood clot in my leg when all my troubles began Connie.
Oh, when they ran those tests while I was in ER, (my own doctor never showed) they said they couldn't find anything.. Later when I went back to get copies from the hospital, it showed I had a granuloma on the left side of my liver (7mm) and two small echogenic masses on the right? This was in 2006, maybe a year after my discovery of having hep c.

You said " I was biopsied right after hep C diagnosis in '93, and there was no cirrhosis. However, in 2005, I was diagnosed with hepatocellular carcinoma and had many different scans and blood tests. None of them revealed cirrhosis. It wasn't until the left lobe was biopsied in '07, at the time the rt. lobe was removed, that cirrhosis was diagnosed. So it really is the definitive diagnostic tool".
I'm gathering that where you stick that needle in has got to determine the locality unless your whole liver happens to be scarred? This took years and I'm sure things inside were brewing too. You had the rt lobe removed..where do you stand with the HC carcinoma now? Thanks, Pohiki-

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 2/28/2010 12:34 PM (GMT -7)   

Pohiki, I've been in remission from cancer for 3 yrs.  I say remission because, even though the cancerous tumor and rt. lobe are gone, there are likely a few cancerous cells lying dormant in my bloodstream.  As for the biopsy results, I believe they consider the sample they obtain indicative of the entire liver.  In other words, if there is cirrhosis, it will be throughout the liver and not just in the spot where the sample was taken.  Hep C, particularly, is not going to target just one spot in the liver.  It attacks the whole thing.

Is there a teaching hospital near you?  If so, you might see if you could be treated by their hepatology dept. free of charge or for low cost.

Good luck!

Hugs,

Connie


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


pohiki
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Date Joined Feb 2010
Total Posts : 17
   Posted 2/28/2010 5:04 PM (GMT -7)   

"Pohiki, I've been in remission from cancer for 3 yrs.  I say remission because, even though the cancerous tumor and rt. lobe are gone, there are likely a few cancerous cells lying dormant in my bloodstream.  As for the biopsy results, I believe they consider the sample they obtain indicative of the entire liver.  In other words, if there is cirrhosis, it will be throughout the liver and not just in the spot where the sample was taken.  Hep C, particularly, is not going to target just one spot in the liver.  It attacks the whole thing.

Is there a teaching hospital near you?  If so, you might see if you could be treated by their hepatology dept. free of charge or for low cost."

Wow...you really helped!! I was almost expecting to be written off (lol). Though the situation on the Island I live is bad, I will certainly look into it- thanks!! I guess given the fact it takes a couple decades (I realize everyone is different) for those who aren't just carriers to develop cirhosis..and not all do. I feel like the (life/energy/force-whatever) is being sucked right out of me. If it was tired that would be one thing..get sleep and be done with it; this is a whole different matter! I'm sure others can relate. I'm really happy to make this positve connection with all of you. Thanks Connie- 

Post Edited By Moderator (hep93) : 2/28/2010 5:43:26 PM (GMT-7)


hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 2/28/2010 5:42 PM (GMT -7)   

You're welcome, pohiki.  See what help you can get and take good care of yourself.  The fatigue is my only outward symptom.  It's the kind of bone-deep tiredness that no amount of sleep will take away.

I took the liberty of putting quotation marks on my post within your post, so it would be less confusing to others.

Hugs,

Connie



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


**David**
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Date Joined Nov 2009
Total Posts : 3708
   Posted 3/1/2010 10:55 AM (GMT -7)   
Pohiki, Here's where I am at present. I was on a transplant list for 5 years, though my MELD score was never above 17, until last July, when it went to 18. I had fluid retention in my legs that became unbearable and I was hospitalized. For 6 days my PCP had me on IV albumin, lasix and spironalactone. I was limited to a litre of fluid by mouth each day. I dropped 27 pounds of fluid in that 6 day period and felt great when I got out of the hospital. Two days later, I saw my PCP and he mentioned that my MELD score was 24. It didn't mean that much to me, as I had been told that I'd probably need 28-30 to get up on the list. The following day, I had to go to Mass General for a seminar for people on the transplant list. As I was about to get on the plane to fly to the mainland, I got a call from the Liver Transplant Coordinator, saying they a Liver Donor offer. I got up to Boston at 10:30 that morning and at 7:30 that night, they began the transplant. I've now had a new liver for 7 months and aside from being out of shape from losing another 20 pounds, without being able to exercise, all is well. No rejection problems so far. **David**

pohiki
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Date Joined Feb 2010
Total Posts : 17
   Posted 3/1/2010 11:03 PM (GMT -7)   
Hi David..omgosh! Though I am a bit unfamilar with what meld score is..but is that ascites your referring to as far as fluid retention? I happen to be looking into that tonight. You've been through quite a bit! I bet it's like having a new lease on life! I'm glad there has been no rejection. Is there a period you go through (where your body axcepts it..where you feel you can exhale a little?
Thanks for the responce-
Pohiki 

pohiki
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Date Joined Feb 2010
Total Posts : 17
   Posted 3/1/2010 11:08 PM (GMT -7)   
Connie, just wanted to say I appreciate your response as well (I'm sure you realize that)..but I'm going to make an effort to look into the heptology dept. too and will get back to you- blessings-
Pohiki

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 3/2/2010 9:02 AM (GMT -7)   

Pohiki, you're welcome.  MELD stands for Model for End Stage Liver Disease and that score determines placement on the transplant list, the higher numbers being at the top of the list for transplant.  If you have your lab results, you can calculate it yourself, here:

http://www.mdcalc.com/meld-score-model-for-end-stage-liver-disease-12-and-older

Transplant centers generally won't list a person until they are in the teens.

Hugs,

Connie

 


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


**David**
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Date Joined Nov 2009
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   Posted 3/2/2010 11:25 AM (GMT -7)   
Pohicki, At this point, all I can do is to keep up with my meds, eat well and try to get back into and stay in shape. Anti rejection meds will be with me forever, though for many people the amounts are decreased over time. I won't tell you that I can exhale, but unless I'm in here or a transplant forum, it's not foremost on my mind. I enjoy every day, as it's one more that might not have been. Did you mention that you live on an island? If so, we're in the same boat, so to speak. **David**

pohiki
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Date Joined Feb 2010
Total Posts : 17
   Posted 3/2/2010 3:03 PM (GMT -7)   
I guess I should start a different thread as I have another question ..I'm trying to frame my words? Thank you Connie- and for the link. You too David (I hear you)..oh, I live in Hawaii..the palm trees look blurry (lol)

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 3/2/2010 8:25 PM (GMT -7)   
Hi Pohiki, I just read your question to me about my husband. Unfortunately he passed away due to liver cancer and cirrhosis in April of 2007. I am still here because of a number of things. One, I want to help others going through it. Two, this forum helps me just as much still, but in different ways now. And lastly, I don't want my husband's death to have been in vain.

Liver disease is one long rocky road to travel. What I have found out from this forum is that a lot of patients and caregivers alike feel all alone. They may have lots of family and friends but unless a person has lived the life so to speak they really don't understand what a person is actually going through. That's what is so wonderful about this forum. Everyone has been or is going through it and is willing to share their knowledge and support unconditionally.

Thoughts and prayers..........
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.


**David**
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Date Joined Nov 2009
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   Posted 3/2/2010 9:31 PM (GMT -7)   
Pohiki, I'm 30 miles south of Cape Cod (Nantucket). Not quite as warm as where you are. **David**

pohiki
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Date Joined Feb 2010
Total Posts : 17
   Posted 3/2/2010 9:33 PM (GMT -7)   
Hello Pink Grandma. I'm sorry to hear about that.".. don't want my husband's death to have been in vain" makes a lot of sense! Encouraging and I appreciate this.
I don't have much money to work with now, but would like to have a liver biopsy. So I'm on line looking to match symptoms (lol). I have family but everyone is so disconnected. Those who do know..as you've mentioned- don't relate? At any rate, it's difficult because I'd like to work and make some money but I  know how bad I feel. Though my husband is aware of "hepatitis" ..and on the one hand he likes me home..home to take care of things.. with the animals ect..its hard. Financially to carry the whole load. I mean, he has pain..age is creeping up too. Then on the other hand, I suppose there is just no real proof yet as to why I feel the way I do. In other words, to many folks..hep just has all these symptoms- but I don't think (many) understand just how limiting it is? As I mentioned to Connie..if it was about just being tired, then that would be one thing. It's the life being drawn out of you...energy it takes to create- to then generate or produce something. I'm stuck in my head..stammering, repeating prayers for goodness sake. Trying to focus and carry out thought processes. I can probably think and type easier..the letters are held here for me while I pause. OK, enough. Thanks for your time, Pohiki-

pohiki
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Date Joined Feb 2010
Total Posts : 17
   Posted 3/3/2010 11:19 AM (GMT -7)   
**David** said...
Pohiki, I'm 30 miles south of Cape Cod (Nantucket). Not quite as warm as where you are. **David**
 
David, My goodness, that is cold! Must be beautiful this time of year! Hawaii is the only state holding out..so far every other state has or has had snow so far! Generally this is the time we get it though (Big Island)- as the mountains are high enough.

**David**
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Date Joined Nov 2009
Total Posts : 3708
   Posted 3/3/2010 12:00 PM (GMT -7)   
Hi Pohiki, I think it's always beautiful here. There are great people and in the off season, it's quiet. I welcome the chance to spend time with friends as well as have the time to read and write. Be well. **David**
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