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Just diag with end-stage liver disease

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Posted 9/8/2007 5:07 AM (GMT 0)
My husband, who has worked 5-7 days aweek up to Aug 6, went to the doctor thinking he had bronchitis or pnemonia, next thing we know the doctor comes back saying something is seriously wrong, his liver enzimes are triple what they should be.  He orders more test. The ultrasound showed some fluid on the liver and his liver was enlarged.  By the next monday we were in the er and they tapped out 2.1 liters of fluid and by that Sunday they tapped out 2.3 liters.  By that next Tues they lifeflighted him to OKC because he was vomiting up blood from bleeding varices in his esophagus.  He stayed there a week and we found out he needs a liver transplant within 6 mo to a year.  He is so weak, nausas, loosing so much weight, even tho his stomach does not change, I can see it in the rest of his body.  He sleeps alot during the day and hurts a lot by evening.  I've never been so scared.  He has Hep C induced Cirrohis at a very advanced stage.  They have him on lacics and lactolose.  We have an appointment Monday to start the evaluation process.
Posted 9/8/2007 1:51 PM (GMT 0)
Hi, Okielady, and welcome. I have 3 half-sisters in the OKC area, and a brother-in-law who received a liver transplant there.

I know you and your hubby must both be in shock, as this seemed to come on suddenly. I'm sure there were probably symptoms that you attributed to other things, such as overworking. The first symptom people with liver disease normally have is fatigue, as well as elevated enzymes.

It is good that the docs acted so quickly. You have a roller coaster ride ahead of you, so please feel free to come here and vent or just share info.

Best of luck to both of you!
Connie
Posted 9/8/2007 2:51 PM (GMT 0)
It has been a shock. He is only 53 and has always been Superman in all of my family's lives. We have 3 grown kids and 3 grandkids. I know with God's help we will get thru this, but I know I can still be scared. Once the doctors came up with the elevated enzymes and elarged liver, I went online and figured out he had Hep C, but never imagined had far advanced everything had gotten. I'm ready for the ride and I'm glad I found this site. I will try to keep coming back.
H
Posted 9/8/2007 5:46 PM (GMT 0)
Okielady, when your hubby had the bleeding varices, did they do a banding procedure? If hep C is the cause of his liver problems, he has probably had it for 20 years or more. It takes decades to start causing problems.

Let us know what happens on Monday.

C.
Posted 9/12/2007 6:50 PM (GMT 0)
Well we are back in the hospital again. His MELD score went from 15 to 25 in 8 days and the doctor wants him on the list ASAP. They drained 1.8 liters of fluid off of him yesterday, He has a UTI and kidney stones, should see a kidney doc today. He had a bad nite and is sleeping today. They did do the banding procedure on him before. They are going to try to do the evaluation process here in the hospital to speed things up. I hope they don't find anything else wrong with him.
H
Posted 9/12/2007 9:00 PM (GMT 0)
My husband has just been diagnosed with end stage liver disease. The doctor stated he had 2-5 years and would consider putting him on the transplant list if he abstained from drinking for the next couple of months. The docotr did not however, presribe any medications at all (very puzzled). This is all new to me and I know he is scarred and so am I. We live in the D.C. area so there are really great hospitals here (john hopkins being one of them). My question is, shouldn't he be on some typr of meds and what do I need to look at for as side effects from the disease. Thank you,

R
Posted 9/13/2007 1:18 AM (GMT 0)

They didn't give Jerry any meds except for lasics and lactalose.  His is Hep C induced with no alcohol or drug related.  He was given 6 mo to a year and they have now reduced that to maybe the 6 mos.  He is now being evaluated to be put on the list and hopefully will be on it by next week, I'm not holding my breath, but I am praying.

Good luck with your husband, I do know if there is alcohol involved, then he has to go to AA.

Take care

H

Posted 9/13/2007 2:17 AM (GMT 0)
Hello Okielady and Scooby40, Welcome to healingwell. I love both of your names. My husband use to call me okielady and I love Scoobydoo. I am so sorry to hear about your husbands. It is a very scary situation to be in for the wives. Are either husband seeing a hepatologist or just a GI. The GI only gave my husband the lasix and the lactalose. It was the hepatologist who really examined his labs and decided on all the other meds and vitamins. If either is not seeing a hepatoligist please have your primary care physician or GI refer them as soon as possible. Hepatoligists are alot more knowledgeable about the liver diseases then the GI. Good luck to all and my thoughts and prayers will be with you. Pink Grandma
Posted 9/13/2007 3:47 AM (GMT 0)
Scooby40 here are some of the side affects that will probably happen. Water retention is probably one of the first to start, they give lasix and/or spirolactone. High ammonia levels usely develop at some point. When it does the patient gets real goofy. They don't know what they are doing and sometimes get combative. The doctors usely prescribe Latalose and/or Xanifan for it. Latalose causes diahrea so the doc's will readjust the dosage as needed. Sometimes they have to drain the abdomen of excess fluids. Varices may develop that sometimes bleed (they band them to keep or stop them from bleeding. Fatigue is a big one. Ichy skin also may develope. They get infections easily. My husband developed seizures and had a minor stroke. Because their blood gets so thin they get cold real easy. Crankiness and abusive behavior manifests near the end and also alot of trips to the ER. Cancer of the liver may also develop. There's alot of other stuff too. Google end stage liver disease. You can find alot of good web sites. Get educated. Stay on top of the doctors. Your going to be the one making sure that he gets and takes all the meds regularly. You are also going to be the one making sure that all tests are ordered when they are suppose to be and taking him to get them done. Get a sturdy little note book to write down all his meds, his appointments and take notes at doctors visits. One other thing. Your husband needs to abstain from alcohol for the rest of his life not just the next couple of months. His liver is already damaged. Every drop of alcohol will damage it futher. Even if he got a new liver......I don't think that he would he want to go through all side affects again. It's going to get a lot worse before it gets better (if he gets a liver transplant). You both will find out just what you're made of fighting this hideous disease. If I am scaring you that's not my intent. I just want you to know what you are up against. I wish that I knew what to expect when my husband was first diagnosed. Maybe he would still be alive. Hang in there and we will be here anytime you have any questions or just need to vent. My thoughts and prayers are with you and your husband. Pink Grandma
Posted 9/13/2007 6:55 PM (GMT 0)
My husband is seeing a Hep doctor at Intergress Baptist Medical Center at their transplant center. We see the heart doctor today or tomorrow, they have done the blood workup and xrays, so we'll see what's next.
My prayers are with you Scooby40.
Posted 9/13/2007 6:56 PM (GMT 0)
Where are you from Pink Grandma, we are from SE OKlahoma
Posted 9/14/2007 2:08 AM (GMT 0)
I am from Stockton, Californnia. My husband gave me the nick name because my skin is white. (German,Swedish and Irish) My husband was Mexican and German. So he was alot darker than me. I called him my brown teddy bear. So glad that your husband is under the care of the hepatologist and the transplant hospital Okielady. But you still have to stay on top of them. There are so many tests that your husband needs to have done that they may get forgotten for awhile. I kept thinking that they know what they are doing but they dropped the ball a few times with my husband. Does your husband have a transplant coordinator? She/he is suppose to coordinate all the tests and dr. appointments. They try to make sure that all the testing takes place when they are suppose to. My husband's coordinator got over-whelmed with all her patients and did drop the ball a couple of times. I don't blame her ........I should have been more aggressive and questioned her with my concerns. Have a great evening. :-) Pink Grandma
Posted 9/15/2007 2:15 AM (GMT 0)

We are home again.  I think they have all the test done for the evaluation and it now goes before the evaluation board to see if he will go on the list.

Take care all

H

Posted 9/15/2007 8:49 AM (GMT 0)
 Hi Okielady, I too am from se okc. I am new to this forum and new to the overwhelming stages of liver disease. I dont know what to do at times and other times I feel I'm doing ok. My husband (common law) has hep c and cirrosis, he has had hep c for 25 yrs. he also drank like there was no tomorrow. I am sad to say he is in jail at this time, nothing bad, but at least I know he is not drinking and he is getting medical care. I have been staying on top of that. I have been pushing the lactulose issue to the doctor there, they called me and told me he was to see the doctor to get the lactulose. I was so relieved. I am trying to stay sane myself, R.D. started to get disoriented, talking and thinking was not rational. I would beg him not to drink and cry when he did. I would get firm and put my foot down and he thought I was being mean. I told him no I wasn't, I was trying to save his life. He decided he was going to live by himself for awhile, I keept tabs on him, but not good enough I guess, cause he got into trouble. My insurance won't cover him cause we are not legally married so I am going to marry him so he can get the help he needs. I just found this forum and feel so relieved I did. I feel so alone at times, I cry a lot and work all the time. I didn't realize what was actually happening with him until after he moved out. I blame myself for not being wiser, for not being stronger, for not being firmer with him. But where he is now , I feel helpless in some ways. Does this make sense? I get so confused myself at times. I just need some insight and extra support and strength. I think he will start getting saner when he gets the lastulose in him, and he will be able to understand me better. Anyone with some insight will be so much appreciated. Thanks for letting me vent. Keep me informed if you will on your situation as well. I wish you the best and my prayers are with you.
Posted 9/15/2007 6:38 PM (GMT 0)
I don't know what to tell you except until he decides he wants to live and not drink, what can you do.  You cannot make him well, he has to want to get there.  Good luck.

Posted 9/15/2007 9:30 PM (GMT 0)
Gennara, I will echo what Okielady said. You did not cause your husband's diseases and you cannot cure them--and I am speaking of both his alcoholism and his liver disease. His incarceration is probably a blessing in disguise. It gives him the opportunity to get some medical attention. There is really nothing medication-wise that can be given except for the Lactulose and Lasix/Aldactone. (Note spellings, everyone.) A multivitamin is suggested. If he is taking only Lasix, he probably needs to also be taking potassium chloride. I am currently taking a m.v., Vitamins C and E, 20 mg of Lasix daily, along with 50 mg of Aldactone daily. While taking Aldactone with Lasix, it is not necessary to take potassium. I had the entire right lobe of my liver excised, along with gall bladder, in mid-May, due to cancer (caused by hep C.)   about 2 months ago, I developed a hiatal hernia at one of the incision sites. However, the surgeon says I am not healed enough from the liver surgery to go in and repair the hernia. I think we are looking at late Oct. or early Nov. Once that is behind me and I'm healthy enough, I will hopefully begin hep C treatment.

Gennara, please do not blame yourself for anything. You have done nothing wrong and you are not responsible for making your guy well or keeping him sober.

Connie

Post Edited (hep93) : 9/16/2007 1:16:56 PM (GMT-6)

Posted 9/16/2007 1:58 AM (GMT 0)
Hello Gennara and welcome to healingwell. Reading your post was like dejavue all over for me. Connie and Okielady are both right. You can do double back flips for your husband but the trueth of the matter is that it is still up to him to decide to make the changes. My husband use to tell all his friends that I was a mean lady. I was only mean to the people who were using him and not really his friends. They were just his drinking buddies. They really didn't care about my husband. It took awhile but he finally realized that he only had a handful of real friends. Hindsight is always 20/20. You can't always know everything all the time. Or for that matter any of the time. Don't beat yourself up for not knowing everthing that was going on with your husband. Start from today and get as much knowledge about it as you can. The internet is a wonderful place to start. You can google anything and find out about it. There are also some here on this forum who know quite a bit about different liver diseases. If you have any questions just ask and if anyone has an answer for you they will reply. If they don't someone can direct you to the right place for some answers. It's a very tough place to be in but you do have alot of support here at healingwell. Take care.

Pink Grandma
Posted 9/16/2007 2:00 AM (GMT 0)
Jerry was diagnosed way to late in the game for the Hep C treatment and I'm wondering after the transplant, if they would treat it at that stage.  I know his immune system will be knocked out, so would his body be able to stand the treatment.  Has anybody had experience with this?  Thanks for your imput.  This truly a great site.  It has been so helpful just reading the different stories.

H

Posted 9/16/2007 7:16 PM (GMT 0)
Okielady, I do recall one person who posted that he had hep C treatment after transplant. However, this is something to ask the hepatologist.

C.
Posted 9/20/2007 10:25 AM (GMT 0)
Okielady, I welcome you to the Forum and offer my prayers and thoughts that your husband will be on the list ASAP and a liver comes available quickly. Take care of yourself during this time. Remember he'll need a healthy partner to look after him after the transplant.
Marg
Posted 9/27/2007 6:17 PM (GMT 0)
Thanks for all your support and prayers.

I need help for itching.  Jerry is itching all over.  I know it's the bilirubin coming out, but does anyone have ideas for relief?

Thanks for any help.

H

Posted 9/28/2007 5:36 AM (GMT 0)
Hello Okie lady, Hope you're doing well. I brought my husband some Eucerin Dry Skin Therapy Calming Creme. It seemed to work for him. More pricey than the regular body lotion but it was worth it to get my husband to stop scatching himself until he bled. Hope this helps. Thoughts and prayers........Pink Grandma
Posted 10/5/2007 3:19 AM (GMT 0)

Thanks Pink Grandma.  The itching seems to become bearable or he is just getting used to it.  Now it's nose bleeds, he's been having them, but now they are more often and lasting longer and he blows out clots of blood at times. His MELD score has now gone to 28 and they are trying to get all the testing done.  We have a pulmonary test and more lab and TB test tomorrow.  I understand why everyone tells the caregiver to take of themselves, this has got to be the hardest thing I've ever done, just watching him going downhill all the time.  But I know we will get thru this, God has got us this far and he will see us thru the rest of it.  If anyone has any ideas about the nose bleeds let me know.

Thanks and God bless all of you

H

Posted 10/5/2007 4:14 AM (GMT 0)
Hello Okie Lady, Glad to hear that his itchiness is better. My husband would stuff kleenex up his nose until the bleeding stopped. If I was home I would put an ice compress to the back of his neck. I don't remember where I heard it from but it would help to stop the nosebleeds.
Well with his meld score so high if they list him...he'll surely be near the top of the list. Hang in there . We are all praying for you both. Pink Grandma
Posted 10/6/2007 1:49 AM (GMT 0)

He does the same thing with the kleenex.  We went to the doctor today, real bad trip, he was throwing up and had nose bleeds all the way there and while we were there, they finally gave us some phenegren and that really helped.  We couldn't do the test, but they did tell they are going to present his case next tuesday, so maybe he will be on the list soon.

H

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