Cirrhosis of the liver (end stage)

Anytime. My thoughts & prayers go out to you.later

I AM SURE IT IS DUE TO MEDICAID BEING SO SLOW IN PAYING AND ALL THE PAPERWORK THEY HAVE TO DO. WE CALLED AT LEAST 20 DENTISTS BEFORE WE FOUND THIS ONE AND THEIR RESPONSE WAS WE DON'T WANT TO DO THE PAPERWORK. WE CALLED KU YESTERDAY AND TOLD THEM about THE DENTIST, THEY TOLD US IF THE DENTIST WILL ONLY DO ONE AT A TIME THAT THEY COULD PROBABLY GET STEVE IN UP THERE TO SEE THEIR DENTIST IF WE HAVE TOO. WE LIVE IN KS AND MEDICAID PAYS FOR EXTRACTIONS ONLY SO THAT HELPS SOME. IT IS JUST A SLOW GOING PROCESS THAT GETS REALLY FRUSTRATING AT TIMES.

 Hi, this is my first post. My husband has been diagnosed with End Stage Cirrhosis. He had a bout with a coma in 2001.  He has not been drinking for years.  We have a 9 year old son.  In November he started putting on fluid everywhere except in the arms, neck and face.  He was put on lasix and aldactone, without relief of the fluid. He gained 30-40 lbs, in about a month and got to the point he could not handle the pain, muscle cramps. He was scheduled to see a Gastro doctor but it was too far off and we ended up in ER. He stayed in the hospital for a week. He had a CT scan of the abdomen, 2 paracentesis (10 Liters)in a week.  He had a ammonia level of 59 during his stay in the hospital. I noticed he was very forgetful and a little confused, and he was stumbling a little. He was put on  lactulose during his stay. Since then it seemed his confusion got worse the fluid was building up quickly and needed another paracentesis in less than 2 weeks, A Gastro doctor told me he was full of air, and double his aldactone to 200mg,he did'nt get another paracentesis til after the Christmas Holidays. This was 2 days before Christmas, I felt liked he neglected my husband, and caused him to suffer more than necessary. Two days after the Holidays another Gastro Dr. ordered the paracentesis, this time they took off 61/2 liters. He was admitted back in the hospital after a week and a half, his lab was drawn and his K+ 6.9, I took him to ER because of his pain and then found out the lab values drawn earlier. This time he was in the local hospital a week with high ammonia levels to the point of total confusion.  A very good social worker got him into a Memphis hospital for a evaluation for a liver transplant, he has had most of the medical testing while there and now we are waiting for our consultations from the rest of the transplant team.  We spent a week away from our son. We just have so uch trouble with the encephalopathy it is unreal, he takes 45cc of lactoluse 3 times a day and sometimes more, it keeps him more oriented but never totally normal. He sleeps most of the time about 20 hours a day. I have very little family support and sometimes I just feel like I am totally going to lose my sanity. I am afraid to go to work, which I work only on the weekends and at night. He is just so unstable.

Hey TDT,

       I can somewhat relate to as what you are going through. My boyfriend Steve was dx almost a year ago now with end stage liver disease (Cirrhosis). His too was caused from drinking for so many years. We have been somewhat lucky though as far as his mental state goes. He has really only had one bad episode that lasted about 2days. He gets confused on things but hasn't had any really bad episodes yet.......  He takes 60cc of lactulose about 5 times a day and is on 300mg of aldactone and 240mg of lasix a day. We also have problems with his weight gain. Since April of 05 the first time he gained like 60lbs and lost 30 and now it just keeps fluctuating between 235 and 250. He usually weighs around 210 normally. Steve is also on a sodium restriction of 2000mg. They did have him on a fluid restriction but took him off.  He hasn't had to have any fluid drawn off of him yet. His doctor wants to hold off a long as possible due to the fact they say it increases your chance of infections. So the only way they will draw fluid off of Steve is if he starts running a fever and they think the fluid maybe infected... I only work about 2days a week now but I am having to change my schedule and do just a few hrs a day here and there. KU called friday and they are wanting to list Steve on the transplant list as soon as he gets either cleared from his dentist or we make a trip to Kansas City and see their dentist. We are going to call his coordinator Thurs to find out what we need to do.... I am sure that down the road I will have to probably either quit my job or take a leave of absence for awhile if he starts getting really bad. There are days his liver pain is so severe he can barely get out of bed... I had never been on a chatting website or anything until Steve got sick and I started looking up information about his disease and the expectations of it. Then I ran across this website and it has been very helpful in information and in support.... This website is truly a blessing.....I hope things go well for you and your husband and everyone is here for you whenever you need us....

Frightened....

Hi T,I'm glad you feel & know your not alone& your really not anymore. I'm sorry to hear your hubby is having such a hard time. He must be so scared & confused to.The muscle mass will deteriate because cirhosis does cause muscle wasting. When You have cirhosis the liver can no longer send out the hormones, chemicalsetc. anymore. also we can no longer eat what we need to keep our organs functioning in harmony. Protien needed for the muscles is a no no to us in the quantity required. along with the vitamins. It really is a catch 22. Have they done a biopsy to confim alchohol or are they saying the ultrasound says fatty liver & assuming alchohol becaus ther are other causes for cirhosis & a fatty liver.While it makes you nervous it's nerve racking & terrifying for your hubby too.Avery difficult situation for you both & your son too I'm sure.I have what they call a blue belly button to from acetis. Is this where your hubby's hurnia is to?God Bless your little family there to sweetie. My thoughts & prayers are with the 3 of you.later....

Hi T,Encephalopathy is not just from alchohol! It is when the liver cannot filter the toxins, so they go thru the blood stream to the brain & causes the brain to swell! To much protien causes encephalopathy too because the liver in advanced stages, cannot break it dow so therefor this causes a buildup of toxins to.I'm not saying the cirhosis didn't start with alcohol, but 20 years dry just seems a little suspicious of maybe there could have been another cause. Anyway he does have it & thats where diet,lactulose etc are so important.My grandfather had cirhosis & hepatic encephalopathy & he never had alcohol or drugs in his life, however he had wilsons disease. Some DRs. are too quick to assume & judge & this makes me very angry. Just like the Dr. whom assumed I had lupus & had me on all those prescriptions that caused my cirhosis when what I really had was ostreoarthritis! Sorry I guess it's my turn to vent.When the fluid gets in the testacles that must be so painfull. Makes me appreciate the fact I'm a woman. My belly button sticks out further now than it did when I was pregnant.I just hope it doesn't start to go south like everything else is & i don't mean for the winter If you know what I mean! Yes my husband knows what its like to see those days without my being confused & disorianated. I'm glad your hubby has been stable the last couple of days, & I'll be praying he can stay that way for awhile.I've never been Jaundiced untill this past Sept just before entering my 10th year,& even now it's just slightly shows on my skin & eyes.My toes are always grey tho& sometimes when I' really bad my feet & lower legs get red & it looks like socks on me. Even When I was in a comma all4 times I wasn't. I do have a lot of redness tho. Like a rash & spider veins on my face ,neck, back, upper chest ,upper arms & thighs. The palms of my hands are beet red. Strange how some of us get yellow & some of us get red.My lower legs & lower legs & some areas on my face get grey especially around the mouth, nose & eyes.But this only occurs when the scales from stable to unstable occur.When the liver function gets low the blood flow in the liver is restricted so thats why the lower extremities get cold in our arms its the same things. I guess you'll just have to snuggle in to him & keep his legs & buns warm for him! My skin gets dry & & like leather. Jergans body lotion makes a fortune off me. They should give me part ownership by now. My prayers are with always & you family too sweetie. Take care & Stay strong. Your a very special lady! Goodnight. later....

Hey Lerie

      how are you doing? Steve is hanging in there we are awaiting a phone call from the coordinator to see about him being on the list. Rebecca called friday and wanted the number to the dentist that Steve is seeing he told her the situation about him wanting to take his time.. She is going to call him and then is suppose to get back with us...I guess she told Steve that if he doesn't do it any quicker that we may have to go to KU and have it done so that he can be cleared and listed. I hope all is well and I'm really glad I found people to talk to.

frightened

He has been sober 4 years, not 20. The encephalopathy then was alcohol induced,very lucky to come out of the coma.  The encephalopathy now is is from the liver not filtering the toxins.  He was using ibuprofen often 4 at a time 3 times a day, which is also harmful to the liver.  He thought it was safe and took it to the extreme. Hugs

Hi frightened and Lerie,

It looks like they are going to do the paracentesis on Friday. It will give him some relief for a short time. I will be praying for you Lerie as I know you will be having your ultra sound on that day also and hope the news is not bad.  I hope I will have his test results back to calculate his MELD score on Friday.  I will try the gold bond out, his skin itch's also.  He has the red spider blotches on him also and they have been increasing, mostly on his back and chest, the palms of his hands are also cherry red. His lower legs do have the leathery gray appearance.  He was up bright and early today, pretty alert, just tires so quickly. I wish we were closer to being on the list for transplant. Does Medicaid pay for it and the anti-rejection drugs?  I have insurance, but fear that the insurance company will try to get out of it.  I may have to apply for Medicaid.  We have not met with the financial coordinator yet. Hope you are having a good day with Steve, Frightened. I hope your day goes well Lerie. Bless You, My Prayers are with you!!!HUGS

YES!  Medicaid does pay for transplant and, I believe, antirejection drugs.  Medicare does not.

 

I have had such swelling in my lower extremities that it started to frighten me.  I called Mayo Oncology yesterday and have an appt. tomorrow with my doc's P.A.  I am trying to watch my sodium, but it's in everything!  I don't really cook, since I live alone, and mostly use frozen meals that I can nuke.  Those are mostly full of sodium, and so are soups.      Anyway, I'm hoping they will prescribe Lasix or another diuretic.  Meanwhile, I remembered that I had some TED hose (compression stockings) from post hip replacement, so I am wearing them and they are helping with the edema.  My feet are hurting though--very tender.

 

Anyone know if this edema is a sign that I'm going into liver failure?   

Hey TDT,

       Steve is on Medicaid and the finacial coordinator told us that it will pay for everything. His little spider spots are on his chest and back mainly. He is starting to have them on his arms and face some. The gold bond that we use is especially for itching it's Gold Bond triple action relief for extra dry and itchy skin. Hopefully after friday your husband will feel better...All of this is just so new to us..it hasn't even been a year yet since he was dx and yet we have had so many changes in our lives and I know there is more to come...It just gets so overwhelming at times.Take Care

frightened

Hey out of curiosity has anyone heard from PN16? I was just wondering how her dad was and how things were going for her and her family??

frightened

Hi Lerie,

Yes, you do deserve a second opinion. Yes, it is alot to go through. But look what you have already made it through! God is answering your prayers. I know you are a fighter, you have come through 4 of the coma's, I have seen my husband in one, they are scary especially for the ones that see it. My husband has no recall of what happened. It is Miracles that you and him lived through it! You deserve a chance!! Prayers and Hugs

Frightened,

It is so hard to see the one we love hurting, or looking into their eyes and you don't see them there. We go to the hospital when the pain is too great. I know the frustration also, we were given a appointment for April. But, with the last hospitalization he was transferred to MU in Memphis to be admitted and evaluated for a transplant. The doctors here did'nt think he could wait that long for the evaluation. Some way we will make it, we are strong women who love our men very much. We are holding things together, but you can't do it all by yourself, you have to pray and put it in GODs hands.  Do something for you, give yourself some time out.You need it! I just went through lossing my mother, a year and a half ago. I was her caretaker, she had cancer, this situation is feeling the same way. I did have to take some time-out. Browse the stores, find a good book, have lunch with a friend. It was just a couple of hours but it helped.  I know how frustrated you are, things are just not getting done quick enough. It just hurts and scares us to no end. I am going to put you on thesecondadam prayer list. I hope tomorrow is a better day for you and Steve. GOD BLESS YOU and HUGS!!!!