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Posted 3/28/2007 11:06 AM (GMT 0)
Pati
It's funny, at my hepatologist's office, they don't seem to think Tylenol is harmful unless it's somehow combined with alcohol. Depends on what doctor you're talking to, I guess. This is typical of what I have been seeing in these forums - one person's doctor is all for something while another's doctor is totally against it. That's why I like these forums. We can exchange info & compare what we have been told.

And yes, the interferon therapy is wicked crap! Every week for 48 weeks, I felt like a I caught a new case of the flu. I was itchy all over, & got an itchy rash, my brush would fill up with hair, I got pretty depressed most of the time (and I do try hard to stay positive), & lots of noise (loud teevee, a roomful of people, etc) really bothered me a lot. I mostly stayed at home where there was peace & quiet. i
Posted 3/28/2007 12:45 PM (GMT 0)

Doug,

I know that all Dr's have different opinnions.  Our Dr, is totally against Herbs, tylenol, even vitamens.  They say a low animal protein diet is best for Lee.  Living in PA, meat is a big part of our diet...I've tried to allow smaller portions, more pasta, salads..but he'd still rather eat his ice cream.

Connie,

Lee was on Predinzone when we first discovered he had HCV.  When we went to the hepatologist he was so upset.  He said that it was one of the worst things to put a liver pt on.  Lee was never what I consider a heavy drinker...he was in the NAVY and of course that was a big part of fun, however not to the extent I would think it would do this much damage.  When Lee was born in 66, he required a blood transfusion.  In the Dr.s opinnion this is when he got it.  When Lee went to the NAVY in 87 they were not yet testing for the virius, that only started in 89, I think.  Just as a note:  The dr. has given Lee Viagra, he just doesn't have the desire to take it...

Pati

Posted 3/28/2007 7:11 PM (GMT 0)
Interesting. I talked to my GP about Viagra once. She checked & let me know that it is processed through the liver & she recommended that I not try it.

I think most of the meds I'm on now mention decreased sex drive or something to that effect. Also, when your abdomen is distended (ascites) & your ankles swollen (edema) with lots of spider veins, it doesn't make you feel very attractive or "in the mood". Not to mention I get cold so easily.

Thanks for letting me put a man's perspective in this discussion.

Doug
Posted 3/29/2007 3:13 AM (GMT 0)
Pati, I don't think they started testing for hep C until '92. That is when I was tested for it, and I remember my doctor telling me that they didn't even have a test for it the previous year. Since I didn't have a diagnosis via biopsy until '93, that's when I consider being officially diagnosed.

I've had a decrease in appetite for "regular" food. I've always had a sweet tooth, but now it's increased to the point that I go through a lot of ice cream in one form or another (light ice cream, fudgesicles, Italian ices.) However, I force myself to eat cereal in the morning and some kind of pasta or chicken at night. Sometimes, I'll just have a Slim Fast, as it has all the vitamins and minerals that Ensure does...just less calories.

As for things being bad for the liver--just about everything is processed by the liver. I think one needs to consider how much good a substance does and if it is worth possible risk. I've been taking ibuprofen 800 for years. I do have to stop it a week before surgery, and my arthritis kicks into pain mode without it--but it's something I have to do. However, I will probably resume it after surgery, unless they come up with a better alternative. I also take Lortab and don't have to stop taking that.

Doug, I can relate to what you are saying. As a woman, I don't feel very attractive these days with a bloated belly. Then there's the fear of hurting my hip.

Connie
Posted 3/29/2007 1:12 PM (GMT 0)
Rick had a severe rash all over his back when on interferon,and I called his GI at the time,who prescribed prednisone,,,,,,4 days later Rick went to the ER with heart racing and chest pain,,,,,,of course we didnt know at that time he had heart blockages,,but we found out as a result of this trip to the hospital,but afterwards I found out how bad it can be on a liver patient to take it(unless for AIH of course),,,,I couldnt believe that his GI would prescribe something that could hurt him like that,,,,,but luckily we changed drs and have a great one now. We have changed all his drs at one point in time or another,except for the heart dr,which may be next,,,,,its like a constant search for the right dr who stays up on what should/should not be done.
As far as the not being in the mood because of the meds,I understand that,,,,when I had acute hep,I was so sick I didnt feel like I was even in reality,much less think about sex,but I still made sure to take care of things,,,,,and at least give loving and cuddling....I am sure that the added health problems Rick has also dont help with this problem. I am understanding, but also sometimes feel like he could make more of an effort to understand how I feel in this situation,,,,:sigh: I know, probably not going to happen. Too hard for him to see outside his own problems.. take care you all
Posted 3/30/2007 8:08 PM (GMT 0)

Hello everyone,

We had our appt today with the Philadelphia Hospital Transplant Team.  They want to lower alot of Lee's meds, they feel they are not helping the confusion he sometimes has.  (knew that, duh).  His MELD is a 16.  They discussed with us accepting a "non-perfect" liver, and the differences between a "non-perfect" and perfect one.  In Lee's case, we have agreed to broaden the scope and accept a non-perfect liver.  See, the HCV will come back in his case within one day.  So what is the difference if we take a liver that tested positive (but has no damage) and a perfect one....the HCV will be there.  They found spots on his liver with the MRI he had done in January, they are having another one done to compare.  They really didn't go into detail about their concerns until, I'm guessing, the new one comes back.  Lee was actually "normal" today....you could hold a conversation with him.  The Dr. still mentioned that he was slurring his words and very unsteady on his feet.  I made sure I told her, he was good today!!!  She told me to leave a very small window open for when I get concerned about him.  She told me that if I have any doubts what so ever...take him to ER...with the medication he's on she said that I could come home one day and find him unresponsive.  (more worry)

So in some ways todays visit did put me at ease....but I think in more it made me more uptight...lol  if possible!

Thank you for listening

Pati

Posted 3/30/2007 10:33 PM (GMT 0)
Hi again. It sounds like Lee is getting some quality medical care now. That's good to hear.

My most recent MELD score was a 12. I've learned over the last 15 months or so (since I got on the transplant list) that the score will often vary from blood test to blood test.

At the clinic I go to, they never mentioned a "perfect" or a "non-perfect" liver. It sounds like you made the best choice; I would have done the same thing. They would have to treat for HCV post-transplant anyway.

Doug
Posted 4/3/2007 10:34 PM (GMT 0)
Hi Doug,
No one ever mentioned to us the use of a "non-perfect" liver either. I think they wait until the MELD score gets higher, or the quality of life decreases. Which Lee's has. In Lee's case, yes he will have to take the Interferon treatment one year after the transplant, whether he gets a perfect or non perfect liver. So in my opinion, what's the difference. The livers they use are tested and my have HEP C, HEP B, but there is no damage to the liver. I encourage anyone with either of these disease who need a transplant to question their transplant team about this.
Posted 4/11/2007 6:10 PM (GMT 0)
Connie,

They gave lee prednisone in the very beginning, the HEP specialist said that was the worst thing they could do and took him off right away. He was never a "heavy" drinker, he drank when he was in the Navy but I still wouldn't say heavy.

Everyone,

Lee's encephalophy is getting harder to control. I came home last week and found him asleep on the couch with a cig butt in his mouth, and the ashes on his chest. It scared me to death. I'm starting to think that i need to stay home, but how can I afford to. Conversations around the house are either non existant, or repeatitive. He doesn't remember having the same conversation the day before or the day before that. He's sleeping more and more. His legs are so filled with fluid, and he hurts so bad in the knees and feet. When will this pain end? I'm really beginning to resent my life. How do I stop?

Pati
Posted 4/11/2007 7:00 PM (GMT 0)
Did Lee ever start taking the lactulose? The last time you mentioned it, he had just gotten the rx but hadn't taken it yet. Unless the doctor at the Philly hospital said something about not taking it, I would recommend he get started. He will probably gripe about how much it makes him go to the bathroom, but the alternative of runaway encephalopathy seems much worse.
Doug
Posted 4/11/2007 7:39 PM (GMT 0)
Hi Doug,

Good to hear from you.

Yes, he has started taking that along with the xifian. Both are supposed to make you go to the bathroom. The latulose he hasn't complained to much about. I'm starting to wonder if he's even taking it. The encepholpathy seems to becoming worse then ever. I have been so depressed latley I don't know i'm doing let alone him. I come to work and cry, go home and cry. All Lee says to me is "why are you so depressed I'm the one who's sick". He has no idea what I'm going thru. I don't know, at least he's in his la la land nothing matters. I have reality and it is a cruel one!
Posted 4/12/2007 7:08 AM (GMT 0)
(((((((((((((((((Pati))))))))))))))))) There's a big hug for you, just because you sound like you could use one.

Connie
Posted 4/12/2007 12:23 PM (GMT 0)
Thank you Connie!  I'm feeling rather hopeless lately. mad
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