hep c and cirrohosis

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toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 2/25/2009 8:32 PM (GMT -7)   
My husband has hep c and cirrohosis.  He just saw a hepatologist and they want him to have an ultrasound of his liver because when you have these 2 liver conditions your "odds" are greater for liver cancer.  I always thought you could make that determination from blood work.  Does anyone if this is true?  My husband looks soo bad and is so depressed it is really hard to stay positive.  Thanks
 

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/25/2009 9:17 PM (GMT -7)   
My husband also has hep C and cirrhosis. Liver cancer cannot be determined by blood work. They do test the blood for alpha fetoprotein (tumor marker), and if it is high it can be an indicator that cancer is present. But it doesn't necessarily mean they have cancer. My husbands has been high but the ultrasounds never show any tumors present. Hep C and cirrhosis can make a person feel very bad. My husband is fatigued all the time. He gets very depressed because he never feels like doing anything but sleeping. I too know that it can be so disheartening. It's hard to watch someone you love go through this. And it is also hard to give up the life you once knew. But there are many people that have received transplants and are back on the road to a normal life. So hang in there and don't give up. You have come to a great place for support. I'm sure you'll be in everyone's prayers, as you will be in mine.
Butterflythree
 
There is always hope!


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 2/26/2009 4:39 AM (GMT -7)   
toolost

Although I do not have hep C, I do have AIH and cirrhosis and I too have to have an imaging scan (ultra sound, cat-scan, ro mri) done every six months due to the increased risk of liver cancer with a damaged liver. I too have had regular blood work done including the alpha fetoprotein test but Butterfly is correct that it is not the most accurate of tools to catch any cancer at an early stage. I know this diagnosis can be overwhelming and depressing, but education in my opinion is the key to arming yourself for this fight. I will keep you both in my thoughts and prayers and good luck.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/26/2009 10:51 AM (GMT -7)   

Toolost, I have hep C and cirrhosis and have lived through liver cancer!  I was having blood work done every 6 mos., but it was caught on a yearly sonogram.  The tumor was so large that I really feel it was overlooked the prior year.  Fortunately, I received SSD and Medicare around that time and was able to go to Mayo Clinic.  They literally saved my life, as the liver CA had metastasized.  It will be 2 yrs. in May that I have been cancer free.  Just to let you know that if your husband DOES have liver cancer, it is possible to overcome it.  My AFP never was very high, even when the cancer was discovered.  Although they take blood work every 3-4 mos., in my case it is not the most reliable indicator of what is going on with my remaining lobe of liver.  Therefore, I have a CT or MRI every 3-4 mos., as well.

I'll be praying that your husband's CT scan is negative, but in case it's not...just know that it is not necessarily "the end."


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


pscwife
Regular Member


Date Joined Dec 2008
Total Posts : 302
   Posted 2/26/2009 4:06 PM (GMT -7)   
 

Amen Hep93!!!  You are truly an inspiration!  turn


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 3/16/2009 3:43 PM (GMT -7)   
My husband told his doctor that he is itching - has tried over the counter creams et. his doctor put him on Rifampin 300 mg. I am trying to do some research, but wanted to check to see if anyone else has taken this RX? Thanks

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/16/2009 4:35 PM (GMT -7)   
TooLost, there is a thread somewhere on here about itching with suggestions of what others have used.  Try doing a search.  Usually a colloidal oatmeal bath gives some relief.
 
Did your husband have his CT scan yet?  If so, do you know the results?



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


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 3/16/2009 5:04 PM (GMT -7)   
Hello, We tried the oatmeal bath - he says it didn't help. We have tried all kinds of creams, he did say that soaking in a tub with baby oil helps some. No - he has not had the CT scan yet. His doctor's office is probably the slowest doctor on this earth!! I called his doctor's office everyday last week and finally they called in something for the itching Rifampin - but everything I have found on the internet indicates that if you have liver disease to let your doc . know. I have learned so much by reading alot of posts. I pray for each and everyone that is going this horible disease. And all of the CARETAKERS.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/16/2009 7:17 PM (GMT -7)   
Get onto the doc's office again about the CT scan.  It's possible that the referral has not even been made yet.  This is not necessarily the doctor's fault.  The doctor gives the order to the office person who sends referrals for tests, makes appts., gets approval from insurance, etc.  You need to find out where the slow-down is.  I can tell you this from having worked in doctors' offices.  If you have the type of insurance that requires approval for tests, I can tell you that the insurance companies are great at putting doctors' offices "on hold" forever and at times the person calling has to give up and go on to the next thing.



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


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 3/18/2009 5:53 PM (GMT -7)   
Finally heard from the doctors office - we got the liver ultrasound, scheduled not until April 13 but at least we have a date. He is probably going to need to be drained next week. It has been about 6 weeks since the last drain. He is taking the max. amounts of diuretics. The good news is he has finally stopped drinking, he said the last time he drank (in December) it made him soo sick. That is about the only good thing that I can think of.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/18/2009 7:29 PM (GMT -7)   

TooLost, that is HUGE that he has stopped drinking.  That is honestly the very best thing he can do for his liver.  It's also good that he got a date for the CT scan.  Sometimes things move slowly, but at least they are getting done. 

Stay positive!


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


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 3/28/2009 8:14 PM (GMT -7)   
My husband had to have fluid drained yesterday, 11.5 liters. I feel so bad for him. He is 48 years and looks like an eighty year old man. He will not talk about his condition, he just sits in his recliner and watches TV all day. In our 22 years of marriage the only arguments we ever had were about his drinking. I'm pretty sure that is why he will not talk to me about how bad he feels. I would never say" I told you so" I feel for everyone that is dealing with this horrible disease.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/28/2009 9:52 PM (GMT -7)   

TooLost, that's only a little over 2 weeks more until the scan...not too bad.

I can tell you that after drinking for so long...numbing his feelings...he cannot begin to even know how to express them now, but you can be sure that he does have a lot of feelings going on (fear and anger are primary.)  If you can't get him to talk about them, see if you can get him to go to AA...even offer to go with him.  The best meetings for newcomers are Speaker Meetings...generally held once a week...where he will not have to say a word, but just listen to someone tell their story of "what happened, what it was like, and what it's like now."  If he refuses to go, you might let him know that to be considered for a transplant he has to be verifiably sober in AA, or an alcohol counseling program approved by the transplant team, for 6 mos.  When an alcoholic stops drinking without a 12-Step program or equivalent, he is just "putting the plug in the jug."  Nothing else has changed.  If nothing changes in him, the likelihood of relapse is huge.  Just some things you should know.

Keep us posted!


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


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/20/2009 3:56 PM (GMT -7)   
We finally got the results back from last weeks visit with the hepatologist. The liver scan did not show any lesions. I believe the next step will be to put a stint in to help control the fluid, I think it is also called TIPS. I just realized over the weekend my husband is taking Miralax I believe once a day - I have seen most people indicate that they are put on lactose. Does anyone know if the Miralax is harmful. Unfortunately, my husband does not always think it is necessary to tell the doctor everything he is taking or how he is not trying to reduce the amount of fluid (water) he is drinking every day. At first he was really watching his fluids and watching what he was eating, but within the last couple of weeks he is eating and drinking what he wants (no alcohol)....I don't think. Also one more question, How long does the stint work? I don't think my husband will go forward with the liver transplant (he can not even be considered until June) but is very depressed and yes his family doctor prescribed some anti depressant medicine, but he refuses to take it. Sorry for all of the negativity here, sometimes he is difficult!! Thanks...toolost

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/20/2009 6:55 PM (GMT -7)   

Hi, Toolost.  Well, that's good news that the scan showed no lesions!  The TIPS should work indefinitely.  Someone with more experience with that can address that issue.  As for the MiraLax, I take it.  In fact, the hepatologist prescribed it prior to it becoming available OTC.  It's a fiber laxative, very gentle.  Is your husband also taking Lactulose?  If not, then the MiraLax should be okay for him.  It IS important to make the hepatologist aware of everything he's taking, though, even OTC vitamins and supplements.

It's a shame that your husband doesn't want to take the antidepressants, though they usually all have side effects that can be unpleasant (weight gain and dry mouth are two common ones.)  However, I'm glad to hear that he isn't drinking alcohol!

Thanks for keeping us updated!  Don't forget to be good to yourself!


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


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 4/29/2009 5:15 PM (GMT -7)   
My husband is scheduled to have the TIPS procedure in the morning. I hope this will help him with the amount of fluid he is retaining. He has been drained several times but he he is so big right now. I really think he has given up. He seems so depressed. I hope this TIPS procedure will give him some relief. This is an awful disease. Right now should be a happy time in our family. Our daughter is graduating high school in June and excited about college but I don't see how my husband will even make it to the graduation ceremony. I know one day at a time. I will check back in soon. Toolost

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/29/2009 5:33 PM (GMT -7)   

TooLost, the TIPS procedure should help your husband feel better.  Don't give up on his attending his daughter's graduation!  If he feels better, he may be up to going.  Also don't give up on the idea of antidepressants. 

Let us know how the procedure goes.


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


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 5/2/2009 6:02 AM (GMT -7)   
Hi Toolost, My husband had the tips procedure in January. He continues to do well. He had the procedure to reduce the risk of bleeds from varices. He has never had to be drained. I can say that it has really helped the swelling in his legs. After the procedure his diuretics were reduced by half. My husband also suffers from depression. It comes and goes with him. Some days are much better than others.

I'll be praying for you both.
Butterflythree
 
There is always hope!


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 5/2/2009 4:29 PM (GMT -7)   
Hello everyone. Everett had the TIPS procedure Thursday. His doctor said things went well! They drained about 13 liters but left some fluid so the stent can reasorb/start doing what it is suppose to do. Initially, He was in a lot of pain,, but as of today that seems to have subsided. Thanks Rick for your information. So glad I have this forum to get information/education. Toolost

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/3/2009 3:37 PM (GMT -7)   
Hello Toolost and Rick.

Toolost.........how's your hubby doing? Hopefully he is feeling better. I know that you are worried sick. Please try to take care of your self too. You need some TLC sometimes too.

Rick that was a wonderful post. My nephew is a crane operator but for shipyards. He loves it too. You are doing good to face your problems........some can't. Keep on trucking Rick.........


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.


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 5/4/2009 3:31 PM (GMT -7)   
Hi Rick and PG - I think my husband is starting to feel better. He actually went to the grocery store today and bought all healthy foods (fruit, whole grain muffins and veggies etc) and He has started drinking Green Tea -Now if I can just get him to take medication for his depression. He has been given medication to take and I think he took it for 2 days and stopped. I am going to give him a few days and maybe we can tackle that problem.
Rick your post really helped - I really appreciate you sharing - Hopefully, you get back to your surgeon soon. Hope everyone is doing well. Toolost

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/4/2009 4:22 PM (GMT -7)   
TooLost, that is great news!  BTW, there are flavored green teas now.  I just picked up a new one by Lipton: Pomegranate and Cranberry green tea.  I also really like Constant Comment's green tea w/Mandarin orange and spice.  I use honey instead of sugar or artificial sweetener.

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


patthom
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/8/2009 9:08 AM (GMT -7)   
ty I learned alot reading all this. I felt very alone for years..as husband willNOT talk about it. I'm scared of my future with the kids. He just stopped drinking a month ago..

thank you so much..
pat

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/8/2009 10:13 AM (GMT -7)   
Pat, I just replied to your other post.  Sorry, I thought your husband was still drinking.  Would he be willing to go to AA?  That would be the best thing for him, and he would also have the greatest chance of hanging onto his sobriety if he gets involved with that program.  He would not feel alone there, believe me.  I have nearly 23 yrs. of sobriety, thanks to AA.  Also, since he is not drinking now, you might consider having him seen at by one of the hepatologists at Mayo Jacksonville.  They do not take HMOs, but do take certain private insurance and also Medicare.  They take Medicaid as a secondary insurance.  And, of course, cash.  If he is not willing to be seen by them at this point, just keep it in mind for the future. 

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


toolost
Regular Member


Date Joined Feb 2009
Total Posts : 29
   Posted 5/29/2009 3:45 AM (GMT -7)   
hi -I have read that sometimes liver disease will cause a "rotten egg smell" this has become really noticeable in the last couple of days. My husband is taking a shower 2x a day and will spray air freshener in the room. Obviously, he REALLY he knows how bad it smells. He is recently started back drinking again. Is it possible that his disease is getting worse? Toolost
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