Thank you so much for your support and prayers. This is such a wonderful forum that brings us all together to support one another and provide a place to share information and experience. I am very grateful for that. I don't know how I would have handled everything we have gone through over the last three years had I not found this forum.
My husband is on both lactulose and Xifaxin daily since June, 2013 when he first had a really bad episode of HE (post transplant). We found out then that it was being caused by a rare portosystemic shunt. Doctors recommended he just remain on lactulose and Xifaxin and not attempt further surgery.
Nothing has come easy for him. I figure sooner or later he will finally get a break. Thank you for your support.
Nan
Hi Joanne
Thank you so much for your input. I am an educator by profession and don't have any medical training. I am retired but still work a couple of days a week. I just can't sit and watch my husband go through so much and not have an understanding of what's causing it. As you noted every person is different and with these new treatments, its impossible for doctors to have all the answers. It's just too soon. One of my strengths is that I pay attention to detail and I can do research online. That has helped me to put two and two together since I am spending so much time with my husband, observing his symptoms, when they start, and what may have caused them.
He is my hero - he has fought so hard for his life. His doctor told him today that he has already beaten the odds several times over the last three years and that is because he has a strong will to live.
So we will continue to fight and we will beat this thing, whatever it takes!!
Thank you, Joanne.
Nan
Wow...reading all of this is a bit overwhelming. I have had my sovaldi / riba since Wednesday and as much as I wanted it...I keep putting off popping that first pill. Scared of a few pills...how silly. At least there's no self shots.
I have HCV, HE and ESLD. Stge 4/decomped liver/high HCV viral load/ MELD of 13/on pre-transplant list/geno 1
Previous trails and therapies induced a bit of anemia. I am scheduled to take a blood test EVERY week...above what they normally require...to check for the anemia and watch my MELD. I take Xifanan for HE. 500 mg x 2 a day... Every so often I do silly things like yesterday was filling up the sink to wash a few dishes and walked outside to walk my dog for about 10 minutes. Needless to say I have a very clean floor. I'll do things like open the frig and walk away and come back later. I notice I can get distracted very easily...lose a sense of time/days/months...forget to eat...sleep is like upside down and minimal....but I still drive...go to the store and the doctor by myself...maintain my home and self. I just have to focus more when I am home. I will not cook and sit down...now I will do the same for the dishes...LOL...They say with HE you can start to have unusual personality characteristics....
Was told that my HE would dissipate after my transplant and I wouldn't need to take the Xifanan. Maybe this is only if I clear the HCV prior to transplant. Hector probably could correct this if that info is wrong.
Nan...your poor husband has had so much to go through but thank God he has you to help him through this. I've stated before I envy those who have a mate to support them through this. It's just like today...I need to go to the store...do I have the energy to do this...no...but will I...yes...because there is no other choice. So having someone just there is the best gift you will ever give him. Pat yourself on the back.....it's spouses like you that are awe too....we have read about and I have so many people email that they do not have a mate or if they do they are in denial so just the fact that your husband is so cared for is wonderful.
So sorry to hear about your stay in the hospital. Glad to know you are doing better. I think these treatments are just so tough that after weeks of it, the body just breaks down (it seems to saying "I just can't take it anymore") and becomes more susceptible to dehyrdation, anemia, and infection.
HE is short for hepatic encephalopathy. This link will give a explanation of what it is. http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm
Unfortunately, my husband has cirrhosis of the new liver and now has portal hypertension and HE which are symptoms of advanced liver disease.
I don't think the procrit itself was the problem causing the encephalopathy as I explained in a prior post above. Its the raising of the hgb along with the
daily ribavirin. One of the side effects of the ribavirin is hemolysis, which release more ammonia into the blood. As his hgb got higher each week, his encephalopathy worsened. It's a vicious cycle - worse encephalopathy means more lactulose and more Xifaxin (rifaximin) which means more bowel movements which means more dehydration which can cause more encephalopathy. I think as his body gets more fatigued, he becomes more susceptible to infection. Infection also brings on encephalopathy.
So happy to hear you don't have much longer on treatment. My advice to you is when you are not feeling well, go into the hospital again for another "tuneup". That's what I intend to do with my husband.
I wish you the best. Keep us posted.
Nan
I am so sorry for your trouble. You are so incredible. Please take time for you in all this (do you do yoga/meditate/run?-these things are my stress reducers). On the bright side, you noted that his liver is seemingly getting a break in all of this. If you are like me, I would hold on to that as you struggle through this.
Note-From what I know (and I am not an expert on this-as always,-ask your doctor for an expert opinion) about dosing for heparin anticoagulation therapy and blood monitoring that is done and why from when I practiced as a nurse AGES ago, the heparin would not have lowered his hemoglobin directly (even though it can reduce a persons platelets - this is generally because of an immune response to the heparin and not a direct result of the heparin's mode of action). But, as an anti-coagulant, it increases the potential for bleeding, which can result in a decrease in the Hgb and Hct in addition to the hemolytic anemia associated with the medication. I am sure that they are checking for bleeding and have ruled that out.
Our physiological responses to drugs will not all be the same (and the level of disease can add to the complexity of our responses. This is why clinical studies are phased the way they are and are conducted in such a way as to look at different modes of treatment/dosing/length of treatment and why they monitor so many things. We like to think that we are a clear box when it comes to medicine, but really, we are all black boxes that are treated based on probability, not certainty. That said, the infection MAY have been a contributing factor to his hemolysis. I am hoping that things stabilize.
I admire you and your husband's enduring fight and am wishing better days for the both of you. Joanne
Nan, we continue to pray for your husband and you. Hoping his hepatic encephalopathy is getting better. When my ammonia levels were up there was a med called Xifaxin (rifaxamin) they prescribed for this. If he is having difficulty with the lactulose you may wish to ask the doctors about this. I also took the lactulose with a later bout and it did help my HE. Hoping and praying for your husband to improve. Stay strong, be well.
Anemia
The primary toxicity of Ribavirin is hemolytic anemia, which was observed in approximately 13% of all Ribavirin/peginterferon alfa-2a- treated subjects in clinical trials. Anemia associated with Ribavirin occurs within 1 to 2 weeks of initiation of therapy. Because the initial drop in hemoglobin may be significant, it is advised that hemoglobin or hematocrit be obtained pretreatment and at week 2 and week 4 of therapy or more frequently if clinically indicated. Patients should then be followed as clinically appropriate. Caution should be exercised in initiating treatment in any patient with baseline risk of severe anemia (e.g., spherocytosis, history of gastrointestinal bleeding)
http://www.drugs.com/pro/ribavirin.html