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Posted 9/27/2008 2:31 AM (GMT 0)
Mia,

I,too, am glad to hear that Matt had a good day. I also agree that it sounds like the lactulose is working....sure makes a difference, huh??? You enjoy those good days!!! I am so sorry to hear you are sick, and hope that you are feeling better. YOu take care of yourself....it's realy easy to get run down taking care of everyone else.......

Talk to you soon!

Mary
Posted 10/3/2008 6:59 AM (GMT 0)
I took Matt to his doctor appointment on monday. His doctor did not have much to tell us.  He gave him refils and said come back in three weeks. We did ask about going for treatment for the hepatitis. He said Matt has to be be sober for six months before they can put him on anything? How long does it take for the lactulose to really take affect? I thought Matt was doing better, but now i'd say maybe not. He's still having problems with anger or rage. He's mind seems a bit foggy and today he lost he's footing. We were in the parking lot i was already in the car waiting for him. As he started to get in the car i seen him try to raise his foot but he did not make it. He sort fell into the car. I got really worried after that happened! This was a rough day for him. Maybe he's pushing himself to much. Some days are better then others. I think he's getting worse though. Maybe they need to up his laculose a bit. It 's the simple things that get him so frustrated!   Take care
Posted 10/3/2008 8:54 PM (GMT 0)
Mia,

Sorry you guys are having a bad day......there are times when I do have to increase the lactulose dosage....call and talk to the doc about it, but basically my husband's hepatologist says for my husband to take and extra dose or increase the dosage from 2 tbsp to 3-4 tbsp....but, I would encourage to you call the doc. Has your husband stopped drinking?? I would question the amount of time sober before starting treatment. It is true that for him to take interfuron for the hep C that he cannot drink while on that medication, but I have not had a doctor state you had to be sober for 6 months before starting treatment. I do know that before they will consider transplant evaluation, they have to be sober for 6 months or so.....just some food for thought.....you hang in there!
Posted 10/3/2008 11:27 PM (GMT 0)

Mer, there is absolutely no sense in getting the hep c treatment if one continues to drink.  nono   I don't know a doctor in the world who would put a drinking patient on treatment.  It would be like throwing a cup of water on a house fire.

Mia, I am so sorry you guys are having a hard time.  I do agree with Mer about calling his doctor. 

Posted 10/4/2008 12:55 AM (GMT 0)
Hi Mia, I have to adjust my husband's lactulose occasionally. He has had some of the same problems. Usually when he starts acting differently I know he needs more lactulose. I also asking if he is having bowel movements regularly. I bet he gets so tired of me asking that, but it helps me to know what is going on with him. If the bowel movements aren't regular, encephalopathy really sets in.
Posted 11/26/2008 8:53 PM (GMT 0)
Hello, Well matt seemed to be doing ok for the past month or so. Then two weeks ago his stomach started growing again. I called his doctor to let him know. They called me back and said keep his dec 22 apointment. Well i got a call yesterday to bring him in today. He said it's not looking good the ascites was getting worst. He also sad it sounds like Matt has fuild in his lungs. He wanted Matt to get an ultrasound and come back on monday. He said He is going to put Matt in the hospital and drain the fluid out. So ok i broke down the doctors office after he walked out. I try so hard to be strong but today it stung me bad! I know this bad right? His doctor said once they start draining they will have keep draining. He told Matt to apply for his disability. He also gave him stonger water pills. I have been crying all morning. His always in pain. Sleeps most of the time and i feel like time is running out for us.   Well they could not get him in till tuesday for the ultrasound so we go back to the doctor on wed the dec 2.  
Posted 11/26/2008 11:10 PM (GMT 0)

Mia, I'm so sorry that things are looking bad, especially now at Thanksgiving.  You said that the doctor increased Matt's diuretic.  That may be enough to prevent him from having to be drained...maybe.  Is he restricting his salt intake?  That is very important, as salt retains water/fluid.  Is Matt still drinking?  I truly hope not, as things will get much worse if he is.

Try to relax some during the holiday and just wait and see what the ultrasound shows.  No sense in worrying when you don't have the test results yet.

Try to have a good Thanksgiving.

Posted 11/27/2008 4:44 AM (GMT 0)
We picked up Matt's pills and i think the doctor made a mistake. He was taking Aldactone 25 mg twice daily. The new one is 100 mg once daily. He also takes Lasix 80 mg once daily and the new one is the same. I thought he said he was incresing both?  I hope your right and the ascites goes down and he won't have to get drained. Matt has not drank since aug 4 or a little before that. He does not add any salt. I bought him ms dash. I try not to add any salt to food while cooking. I try to watch his protein and drink intake. We'll just have to see what happpens. I try not get upset. I never cry in front of him. I know he is worried and i don't want to add to it. I hope everyone has a Happy Holiday! Take care  
Posted 11/27/2008 4:42 PM (GMT 0)

Mia, 80 mg is quite a bit of Lasix.  However, you might want to check with the doctor to see if he wants to increase that a bit.  Aldactone is also a diuretic, though milder.  I take 100 mg myself, and at one time they had me taking 200 mg when my potassium was low.

I am SO happy to hear that Matt stopped drinking!  Just doing that alone will help lengthen his life.

You should read the labels on all foods.  Canned foods are VERY high in sodium unless you can find "no salt added."  Frozen dinners are also high in sodium.  I read labels on everything I ingest, and base my meals on that.  Lemon juice is a good alternative to salt in many dishes, including green veggies, chicken, and fish of all kinds.

Have a good Thanksgiving!

Posted 11/27/2008 6:59 PM (GMT 0)
connie i made a mistake. Matt new script for Lasix is 80mg twice daily!! Aldactone 100 mg. So the doctor did raise both meds. I missed it when looking at the bottle yesterday. Happy Thanksgiving!!
Posted 11/27/2008 11:35 PM (GMT 0)

Mia, that should be plenty to do him some good.  Let's hope so, anyway!

Happy Thanksgiving to you, too!

Posted Yesterday 5:59 AM (GMT 0)
    hello everyone its been awhile since ive been here, since my husband passed away i have been trying not to think about all this stuff but after reading mias post i felt like i should reply on it.  Mia i know from experience how hard it is to watch someone you love go through this and everyone in here is right this disease is very unpredictable and your husband realy needs a hepatologist, you may also ask his dr about rifaxin they gave it to my husband when he was having problems with ammonia its an antibiotic that helps with the toxins that build up and works with the lactoluse and please whatever you do have them check him for bleeding varicies, cause there is a medicine he can take for that to help, cause my husband died from a variceal bleed and i dont hear many people talk about that on here and if your dr doesnt tell you about this or check him for it , it can also cost him his life.       Best Wishes to all who have this terrible disease and to all those who care for them, Happy Thanksgiving, Mary
Posted Yesterday 9:39 PM (GMT 0)
Mary, thank you for your comments. I'm very sorry to hear about your husband. I can't imagine what your going though. I asked Matt's doctor the other day about bleeds. He just shock his head no. We were looking at matt stomach. He has these bulging things coming from the middle of his belly running up to his chest. I told him i heard that Matt could get a bleed. like i said he said no. Or maybe he no don't worry about that. I have asked if matt need to go see a specialist. He told me three months ago not for 6 months. He said matt would have to be dry (not drinking) for six month before he could see any one else. I am worried since Matt seems to be getting worse. Matt found out he was sick about 2 years ago when his legs swelled. But once the swelling went down and he was not on any more meds. He started to drink again. But once again this summer he swelled up and i had to take him back, he quit and knows never again can he drink. It's hard to see him in pain. We really can't touch around his belly at all. That includs reall hugs. It's hard for my girls not being able to hugs dad. Not being able to lie down next to him while he watches tv. He sleeps alot. But wakes up crying out he hurts. He's always cold. Know i can hear the fulid in his lungs. He makes a popping noise in his sleep. Walking to room to room gets him breatheless. He so angry that he's sick and screams at everyone. He has told me his body is shutting down. He says i know i'm dying i can feel it. Well i hope you had a nice holiday  
Posted Yesterday 10:18 PM (GMT 0)
My brother started getting those rattling or popping sounds about three days before we finally got him to go to the Emergency room. He was put into Intensive care right away with an unknown lung infection. He has been on a breathing tube for almost three weeks now. He had severe Sepsis, but antibiotics eventually cleared up the infection. He was taken off the breathing tube for two days, but the infection came back full-force yesterday. The doctor called me last night at one a.m. saying that he was in shock and wanted to know if we wanted to revive him if he went into cardiac arrest. I told them not to revive him.

They were able to stabilize him somewhat and he is still alive as of now, but is in critical condition. I doubt that he will make it much longer. He is 49 and a very heavy Vodka drinker. He quit drinking when he was first hospitalized with all the same symptoms that your husband has (September 24, 2008). He probably won't make it through this new infections. They think his kidneys have now shut down, so he is on dialysis.

My point in writing all of this is to tell you that the doctors said that if he had gone to the emergency room when we first noticed the rattle in his lungs, they might have had better luck treating him. You might want to call your doctor or visit a good emergency room to get him checked out. My brother is very lucky in that he is in New Orleans and is at a very good transplant hospital. They understand how to treat his condition.

I'm sorry that you and your children are going through this. I hope your husband's outcome turns out better than my brother's.
Posted Today 2:42 PM (GMT 0)

Mia,

I am so sorry to hear Matt is having trouble......it is soooo tough to watch our hubby's go through this. My hubby was in the same frame of mind a while back....bad attitude, angry at everthing, etc.....I am sure Matt does not feel like he can "let it all out" any other way than to lash out.

I would definitely take him to an ER if you are hearing rattling in his chest........is your doctor that's treating him a GI doc or a GP?? If it's a GP, I would DEFINITELY try to get in with a GI doc, or find a hepatologist. A GP is NOT the expert on all this and should not be telling you that you have to wait to get treated....that's insane!! My hubby has some stuff going on not related to his Hep C/cirrhosies and I am getting a second opinion....

Mia, you take care of yourself through all of this! I will pray for peace for you guys. If your hubby has fluid (which is sounds like he does), then there is something they can do about that. I think I read that you guys are on diuretics....that should help. Also, make sure you limit the sodium intake, and watch the red meat. You will have to be his advocate....so push, push, push those doctors and MAKE them do something!!! ( I think I read on another thread that someone threatened the doctor with a turkey baster and lactulose to get an answer and direction of care for her husband!!! Do that if you have to!!) If this disease has taught me anything, it has taught me that I have to be REALLY bold with the doctors and pushy to get something accomplished!!

You hang in there!

Mer

Posted Today 4:20 PM (GMT 0)
justlookin, Matt's doctor is have an ultlasound and chest x-ray done on tues. He said he is putting Matt in the hospital on Wed to remove the fluid. I ask Matt though out the day how he feeling and i will take him early if need be. Sorry tohear that your brother is not doing well. I will keep you in my thoughts and prayers.   Mer, Matt just has he's primary doctor. I have asked about him going to see a specialist. But am getting now. I called a Hepatollogist yesterday to see if i needed a referal but they were closed. I plan on calling back on Monday. I don't let him salt his food and i don't add any salt. But he was drinking sports drinks. Untill i found last week it contains salt. I had no idea. I think Matt is angry he's sick and knows deep down he's losing this battle fast. He's scared and like everyone who's ill does not want to die!! Last night he woke to a bad leg cramp. I just weighed him today and i think he's already lost about 10 pds. I will go buy some bananas. That should help right?   Well I hope everyone has a great weekend!
Posted Today 4:45 PM (GMT 0)
Mia,  Mer told you well.  Sometimes in order to get good health care you have to get pushy.  Don't be afraid to demand good health care for your husband.  Doctors aren't always right and if your gut tells you something is wrong with the way his doctor is treating him don't be afraid to tell him so and demand a referral or get a 2nd opinion.    Once the doctor knows that you are serious and that you have some knowledge of this disease they are more apt to act apon your wishes. 

and pay attention to you and what you are saying.

Good luck and hope your husband starts feeling better.......thoughts and prayers... 

Posted Today 7:20 PM (GMT 0)
Mia, it's been nearly 4 mos. since Matt drank.  Regardless of what the current doctor says, I think it's time for him to see a hepatologist, and I don't think he would be turned away.  Do you need a referral or can you make an appt. with one on your own?  If you need a referral, insist upon it.  Tell the doc that you and Matt are very concerned about his current status and want a 2nd opinion from an expert!

Posted 11/30/2008 3:14 AM (GMT 0)
Mia, I agree with Connie. Most primary care doctors don't have the knowledge to deal with cirrhosis. Insist on being referred to a hepatologist. I don't understand why Matt's primary card doctor hasn't already done this. As far as bleeds goes, they are a real possibility in people with cirrhosis. Has Matt ever had an endoscopy? This is usually done when someone is diagnosed with cirrhosis. This is a test that is done to look for varices (enlarged veins) in the esophageous and stomach. If varices are found medication will be prescribed to help relieve the pressure to help prevent the varices from bursting. The endoscopy can be a useful tool but can't always predict a bleed. My husband just barely survived a horrible bleed. He had just had an endoscopy in October and was told the varices were improving.

My prayers will be with you and Matt.
Posted 11/30/2008 4:44 AM (GMT 0)
Mia, I am terribly sorry to hear about your husbands recent troubles. You definitely cae to the right place for help and advice. I will pray for your husband and you and please try to get some rest for yourself.

Karen
Posted 11/30/2008 4:46 AM (GMT 0)
MyBaby

I am truly sorry about your husbands passing. I pray he did not have to suffer too much. I pray that you will find comfort and peace

Karen
Posted 11/30/2008 4:54 AM (GMT 0)
Mia, bananas won't hurt, but they won't do much as far as the cramps.  (Fine for healthy people who need a little extra supplement, but no big help to liver patients.)  He needs potassium tablets or capsules that are measured in micrograms (mcg.)  You can get OTC ones, though they aren't very strong.  They come in mg.   Better than bananas in an emergency, though.  Be sure to tell the doctor about the cramps.  He may need his Aldactone increased more or some potassium tabs.

Posted 11/30/2008 5:41 AM (GMT 0)
My brother was referred to a hepatologist within two weeks of his diagnosis. He had only quit drinking for two weeks when he was seen. Rather than assigning him a doctor, he is being seen by a nurse practitioner (was a head nurse on the liver transplant team, so she is very knowledgeable). She just called one of the doctors in when she needed his advice. He lives in New Orleans, though, and his doctor is with the transplant unit of a hospital there. It's probably easier to get competent physicians in a large area.

hep93 said...
Mia, it's been nearly 4 mos. since Matt drank. Regardless of what the current doctor says, I think it's time for him to see a hepatologist, and I don't think he would be turned away. Do you need a referral or can you make an appt. with one on your own? If you need a referral, insist upon it. Tell the doc that you and Matt are very concerned about his current status and want a 2nd opinion from an expert!

Posted 11/30/2008 5:46 AM (GMT 0)
hello Mia I hope everything is ok with you. Please see a hepatologist cause form what i have learned evryone with esld has varicies and it is very serious and your husband could bleed to death from them so please have him checked, my husband had a variceal bleed and it progressed from there until he died and he was so close to getting on the transplant list they even said in the hospital that if he would of lived 2 more weeks they would of gone on and transplanted him but he had been through so much that his body couldnt take anymore and let me tell you it is the hardest thing i have ever had to go through in my life was to slowly watch him die and to be there with him telling me that he loved me over and over til he took his last breath. He went through so much to try and get that transplant and he still didnt get it and its sad he was the love of my life but this disease dont have a certain order it goes by it is different with everyone and you can be great one minute and gone the next i hate to say it that wat but i want you to know this disease is nothing to play around with and im gonna go cause there is so much i could say but dont want to write a book to you. take care, mary
Posted 11/30/2008 3:16 PM (GMT 0)
I agree with Mary. It seemed like everything was going well with my husband when his varices burst, and he almost died. He had been at his brothers that day, felt fine and stepped out of his truck then started feeling dizzy. He barely made it into the house.
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