Need some input here

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mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 10/14/2008 12:48 PM (GMT -7)   
Hello, All! Just a quick re-cap, then my question. My husband has Hep C and cirrhoses of the liver and is currently awaiting transplant, but his MELD is only an 8 right now. He has been extremely fatigued and complaining of pain more so than normal. We have never had to be drained due to ascites, although his belly is very distended. He just called me at work and it was somewhat alarming because he says the pain is so intense and he does not know how much more he can take. My question is this.....does ascited cause pain, or is there any input as to what kind of pain he could be having with the liver??? Or, possibly do I need to ask the doctor if there is something else going on??? Last AFP draw was normal, so no cancer......
 
Thank you!
 
Mary

writeleft
New Member


Date Joined Sep 2008
Total Posts : 14
   Posted 10/14/2008 2:21 PM (GMT -7)   

Mary,

I have been through the ascites thing so recently, I hope this helps you in any way.

The ascites puts pressure against all the organs in the belly, including the lungs.  As my friend Bruce goes through it, he gets very very fatigued, and unable to get comfortable, with stabbing pains (which the dr. says is from the liver inflamation itself) up under the rib. I would speak to his dr. about it.  It could be a sign of something, like gall stones, or infection. (Both happened to my buddy Bruce, right around the onset of the ascites).

I am so sorry to hear your husband is going through this.  You are a wonderful soul, to share all you know about this terrible disease, while facing it yourself.  I can only offer my thoughts and prayers, and words of support.



 
until next time,
     writeleft

Post Edited (writeleft) : 10/14/2008 3:25:58 PM (GMT-6)


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 10/14/2008 2:58 PM (GMT -7)   
Thank you! That is absolutely helpful, and makes sense......just looking at him and the amount of pain he's in makes me wonder what's REALLY going on!! He's always had the dull "ache" on the side the liver is on, but the man is in some very obvious pain right now. Usually when I take him in through the ER, when it gets this bad, they have this deer in the headlights thing going on and I usually have to tell THEM what to look for, etc......

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/14/2008 4:06 PM (GMT -7)   
Hi Mary, I just wanted to add that the AFP is not a true indicator of cancer. My husbands was extremely high when he was first diagnosed with cirrhosis. They did a scan and there was no cancer. I'm not sure but I think Connie's AFP never indicated cancer. I was told that because a person's AFP is high does not necessarily mean they have cancer, but it can be an indicator. The doctor's use it as a tool. Thanks for asking the question regarding pain with ascites. I wondered that myself. My husband has not had to be drained either, and I was wondering how we would know if he needed it. I know that shortness of breath is one indicator. He had some bad pains in his chest and stomach the other night but they only lasted a minute or so.

Writeleft, Thanks so much for sharing with us.

As always, you are both in my prayers.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/14/2008 4:34 PM (GMT -7)   

I agree that something else could be going on.  Although I looked 8 mos. pregnant at times, I never had any abdominal pain, nor liver pain.  I did have pain in my feet when they became swollen. 

Butterfly is partially right--my AFP was above normal, but not what you would expect it to be with liver cancer, which I DID have.  My blood work has never been a true reflection of what is going on.  I do have a left-sided pain just below my ribs, but nobody seems to know what that is about.  Nothing shows up on scans.  eyes   I had this pain even prior to my cancer diagnosis...but it's gotten worse lately. 

Bruce can go to the ER, but I think he needs to see his hepatologist ASAP.


Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/14/2008 6:32 PM (GMT -7)   
High Mary, sorry that your husband has been in so much pain.

My husband developed gallstones. And they gave him a lot of pain. They wouldn't do surgery to remove them because they were concerned about him bleeding to death. He never needed to get drained either but his stomach was extended a lot. They controlled the ascites with Lasix and Aldactone. But then his sodium and I think his magnesium would go too low and he would have a lot of cramping. So needless to say they would readjust his meds everytime he went to the doctor. It was one heck of a balancing act that they were doing.

Write everything down and take your list to his next doctor's visit.
And Connie is absolutely right........get him in sooner rather than just wait for his next visit.

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.


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 10/14/2008 7:15 PM (GMT -7)   
Thank you all! His next visit is Thursday morning anyway.....I just hate to watch him like this until then. In my gut, I feel like there is something more than just the cirrhosis and HepC. I know the HepC can make you feel like the flu all the time, but not that much pain. Thank you for the input on theAFP, because I thought that's what they went by to see if there was cancer. So, do I need to push for some scans of some kind to check and make sure no cancer??? I am sure scans would also show if there are gall stone, too, huh?? As far as fluid, he's on Hydrochorot (a diuretic ) and his fluid retention does not look as bas as it has been. And, last severral sonos did not show any signs of ascites.....this disease is so draining because there are so many things that can "happen".....

okielady
Regular Member


Date Joined Sep 2007
Total Posts : 77
   Posted 10/14/2008 7:50 PM (GMT -7)   

Mary

I know what you mean about the deer in the headlight look at the ER.  I had to take Jerry to one before his transplant, to get him stabalized to get to THE hospital and I knew when the doc got his labs back he was ready to get him out of there as soon as possible, but still yet knew he had to have blood before he could be transported, I actually felt bad for him, cause I knew Jerry was bad.  If your husband is waiting on a transplant and is listed, he should have a coordinator and the transplant unit has an emergency number, call them and talk to them about the pain.  You know if this is something you need to talk them about and it sounds like you should talk to them.  I called when I was worried because I lived with him and I knew when things wasn't right.  Our team called us back on messages and worked with us on any issue.  I hope everything works out and he gets a transplant soon.  The healthier they are at transplant time the better.

Helen

 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/14/2008 9:46 PM (GMT -7)   

Mer, cirrhosis can cause pain.  As far as the hydrochlorothiazide (HCTZ), it is a diuretic, but a very mild one.  I was on it for years to keep my BP down, but after awhile it no longer worked and I was changed to Norvasc.  If Bruce has bad ascites and edema, he needs something stronger.  Usually Lasix and Aldactone are prescribed, or Lasix and Potassium. 

A total body MRI with Gadolineum contrast will make cancer "light up like a Christmas tree" if it's in the body.  I've had at least 3 of those scans, and I seem to recall another scan using Gadolineum with a CT scan. 



Hugs,
Connie
 
"But that was yesterday, and I was a different person then."
 
Alice in Wonderland, Lewis Carroll

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