"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."lerie
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."lerie
Hi,
I understand your panic and fears. The word cancer is scary in everyone's mind but it sounds like it would just mean a new liver sooner than anticipated and that is great. Try to focus on the positive whenever you can and remember to take care of yourself. Your feelings are very normal and don't deny them. Don't you hate it when someone tells you that you must be brave for your husband. People sharing your problems never say that as we truly understand your terror and wide range of emotions.
The new antibiotic is probably Rifaximin or Ximin. That is one of the antibiotics my husband uses. It's very expensive for us. This antibiotic is used for Traveler's diarhia but found to be helpful with hepatic encephalopathy. My husband also gets dehydrated on Lactulose and only uses it if all else fails. It sounds like your Doctors have a great understanding of your husband's condition and a wealth of knowledge to call upon.
Im new to the forum myself. My thoughts and prayers are with you. My husband has lived with cancer for two years along with cirrhosis.
Big Hugs, Barbara
Teresa
Teresa,
You were not too far me. I live close to Nashville, Tn. My husband has cirrhosis of the liver and hep c. I am still learning and trying to educate myself about all of this. I do want to tell you that I care as well. My heart and prayers are with you. You not alone. Welcome to this forum.
My husband use to have high blood pressure untill the hep c and cirrhosis but now it ramains down, the doc said becuase of the disease. I check it from time to time and it runs low. He use to have to take blood pressure medication.
Just know that I care and you have found some great new friends! God Bless you and your family.
Hugs,
donna
I am from Arkansas, though we have a transplant team here it just opened in May or June in 2005 and they are not taking any Liver patients at this time. We are very happy with the Doctors in Memphis, the drive is a little long but well worth it!! They are talking about portal hypertension, which is caused from the back flow that the Liver cannot handle anymore. His blood Pressure is never very high, in fact it does run low, but at the same time there is pressure being put on other areas that can cause varices to rupture. The doctor is trying to prevent this from happening. This disease is a very complicate and a ongoing process. It really affect so much. My husband was working in extreme heat and taking ibuprofen all summer long and I believe the heat may have caused the progression. He had swelling in his feet and legs, it went out of control all the way up to his thighs with 4+ edema, and then to the abdomen. The edema is gone now, we have been dealing with severe ascites since. We have had so many changes in such a short time. I appreciate your kind words and your reply,know you will always have a friend here neighbor!!! HUGS and PRAYERS !!!!!
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."lerie
Teresa
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."lerie
Val, I am so glad you have lost some fluid! Praise the Lord. Now he needs to take the rest off! Friends lets keep praying :)Bless your heart I am sorry your miserable. Hang in there sweet gal and know that we love you!
Tony is doing a little better. He is though getting the fluid back in his feet, ankles, and legs. He is back to itching. But he never complains and has the best attitude.....don't know if I could be so cool...
T, My husband works hard hard labor, he installs fire places and get on high roofs. He works very hard. It's hard on him, especially in the summer months. He will be on disability I hope very soon. It is time. He can barely make it now. After coming home from work he went to the recliner and went fast asleep. This is what is does every day that he works.
My heart and prayers are with all of you who suffer with this awfull disease.
Love to All!
donajean
My heart and prayers go out to the caretakers as well!!! Know that you are not alone. We are here to help each other.
Love to all........
donajean
Donna that sounds like what my husband did all summer, it would go down at night, be back the next day. Then his stomach started filling up with fluid and it got to the point, I had to take him to the ER, and he was admitted to the hospital. They had to do 2 paracentesis in a week, and has had several more since December. They usually take anywhere from 6-8 liters off, just imagine 3-4 2 liter bottles of coke.That is a lot of fluid and then going back again and doing it in 2 weeks. They have had no choice but to do it, he has been on preventative maintenance antibiotic's to keep from getting a bacterial infection. I can only pray the diuretics start working on the ascites. I really do feel like the hard work my husband was doing did cause his condition to progress faster. We are waiting to see if he will be approved for disability. I'm pretty sure he will be approved soon. HUGS and PRAYERS!!!!
Teresa
I am sorry your husband has suffered ascites in the stomach.My husband has fluid only in his feet ankles and legs. He was in the hosipital in August for the first time for they never figured it out. He was running fever, had fluid on his feet, ankles and legs very bad. They said he had cellelitus on the legs. All they did was remove the fluid in those ares for 3 days then released him. He seemed ok. His back was kiliing him and his Primary Care Dr. said it might have been the stone that was in the kidney. It is gone now. Don't really know. His plalette count is very low and always has been. He is very jaundice looking and some yellow on the whites of his eyes. His feet are almost black. And the Dr's can not tell us what that is....Now here we live in the Big city of Nashville, with some of the finest Dr.'s and hospitals and they can not tell us some things that are going wrong with my husband Tony. In 2004, at the University of Alabama Hospital one of the largest organ transplant hospitals in the world said on the MELD score Tony is a 13. You have to have a 40 to get a new liver,I think some one please correct me if I am wrong. He has had one bladder infection and a few colds and bronchitis.
He does have a very large stomach, but the Dr's say it's fat. He has gained alot of weight over the past few years, but he loves to eat. He also loves salt. Over the past few years he has gotten more tired, his joints, muscels, feet and legs hurt all of the time. He did say he feels like half a man. It is very hard to see him in such bad shape. Many times he needed help with getting wood out of the truck to the yard so we can heat the house and he would not ask anyone to help him. I wouldd help, but then would suffer from it, for I have ddd, djd, osteoarthritis and a buldging disk in the L4 and L5. All we can do is take one day at a time and Trust in the Good Lord, for he knows what is best!
Thank you for responing and thank you all for letting me vent on here. Your a great bunch of folks!
Hey All, I meant to say Tony also has the muscle cramps from time to time. It must be the disease cause they check him and his electrolites are ok.
Take Care and God Bless,
donajean
The Meld score is wrong. You can get a transplant at 20, which does mean you are pretty sick. At 40 I'm not sure but you might not make it through the surgery, I stand to be corrected also if I am wrong. There are alot of people that get transplants while the MELD score is in the 20's. Mark has a 18, Which they said it would put him at either a 4 or 5 on the list. The MELD scores do change as the disease progresses. It goes by the creatine, bilirubin and the INR. Marks will be calculated every 3 months, by the doctors. I also calculate it on a website. Does Tony have a hepatologist in Nashville? If he doesn't he really needs to see one, to be re-evaluated. The doctors where I live were in over their heads with Marks condition. My husbands joints, muscles, legs and feet hurt him a lot also. He gets muscle cramps also. I was told it was the disease. It sounds like you really have a full plate also!!! I hope that you can find someone to help with the heavy chores!!! We all have to vent, we are human! We have high stress with watching and caring for our loved ones. It hurts us to see their diseases progressing. We have to have an outlet and this is the best place I have seen so far. It is because we all have something in common. I found this forum by accident, or was it really (I think the man upstairs brought me here). I have been finding ways to cope. Just know that you are not alone and I am going to be here for you too. I am going to put you on the Prayer list and may God Bless you, you are a very special person!!!!! HUGS and PRAYERS!!!!!!
Teresa
Hello Everyone,
I'm certainly getting a much clearer picture of what my husband Gene is going through with his liver failure from following everyone else's posts. There seem to be similarities and differences with everyone but the one thing that remains constant is how wonderful and safe this forum is for all of us; patients and caregivers. And yes, it is God sent.
There is no transplant possibility for Gene at the end of the rode. He has been fortunate that his acities is only in the lower extemeties although four liters of fluid were removed from his stomach when he was first diagnosed in May of 2003. He was told he would probably be back in a month for more fluid removal but it hasn't happened so far. Gene's legs and feet have become much more swollen the past week. Gene recently started soaking and massaging his feet in salt warm salt water per one of his Doctor's requests to try and improve circulation in his feet. He is developing neuropathy. We suspect the soaking is the culpret. Last night Gene's ankle also started itching but improved when he used some antifungal creme. It's also interesting, that Gene gets the severe muscle cramps or Charlie horses occasionally. We were told it was from his back but it is beginnig to sound like it comes from the liver also. One other thing, Gene has severe Osteo Arthritis in his knees and would under normal circumstance be scheduled for knee replacement surgery. Hmm, normal circumstances, there is nothing normal in our life anymore.
But at least I no longer feel isolated and alone thanks to everyone here.
Hugs and prayers for everyone,
Barbara
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."lerie
We really do have a safe place to come and talk. And I agree 100% that it is GOD SENT. Mark started getting severe muscle cramps and they were frequent before he started getting the proper medical treatment. Now that he has gotten proper medical attention they are less frequent. The doctor is letting him have flexeril, but only 1 and he can't have it everyday. Mark complains of back pain also.... Gene is so lucky about the ascites, Mark looks like a skinny pregnant man. It is very obvious that he has ascites. they can tap his abdomen and hear a "wave". I have heard with obese patients the only way to tell is by ultra sound. They have taken large amounts of fluid off of Mark. I hope we don't have to do another paracentesis. When a person has severe Liver disease, their body is deprived of many nutrients, which does contribute to Osteo Arthritis, among other things. You are right there is nothing normal in our life anymore! But we have been brought together on this wonderful forum so we are learning how to live in our un-normal lives!!!! God Bless You!!! HUGS and PRAYERs!!!!
Teresa
Post Edited (TDT) : 2/10/2006 1:10:17 AM (GMT-7)
"There is at least one good thing in each and every day we just have to find it and if we look hard enough we will.Somedays we just have to look a little harder than others,but its alway's there."lerie