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It All Happened So Fast!

Hi, my name is Heidi.  On March 19th of this year my 46 year old husband, Jeff, was diagnosed with cirrhosis of the liver from alcohol.  November of last year he was admitted to the hospital for seizures due to alcohol withdrawls.  At that time the doctor told me that if he continues to drink he gives him only a year to live!  No one spoke of cirrhosis.  This is the exact way my 52 year old sister passed away in December of 2010!  Long story short we continued to have beers without thinking of how serious this was.  On March 19th, the day after we had to have our 12 year old dog put down, Jeff sat up from a deep sleep at 5:30 in the morning and vomited so much blood I thought I was in a horror movie!  I immediately called 911 and he was brought to the hospital. I had noticed for a several days that his eyes were VERY yellow.  I mentioned it to him and he went and looked in the mirror and he said that they weren't.  At the hospital they banded his varicies, put him on a blood pressure med to keep the pressure down in his esophogus and 3 days later we were sent home with the instructions of keeping a low sodium diet.  No one told us what was going to happen.  No one told us his stomach was going to swell to the size of a pregnant woman at 9 months!  Only after many hours online did I realize the seriousness of this illness.  He hasn't drank a drop of liquor since that day, March 19th, 2012.  On Easter Sunday, April 8th 2012, Jeff wasn't feeling so good.  He had gone downstairs to go to the bathroom and came back up and looked so ashen I asked if he wanted to get dressed and go to the hospital.  He said he felt nausous so I got him the gabage can.  He stood up to vomit and I watched, so afraid, praying it wouldn't be blood, but it was.  LARGE amounts, worse than the first time.  I called 911.  While the paramedics were taking there sweet time outside he proceeded to vomit 2 more times.  MORE blood.  I screamed out the window HURRY he's going to bleed to death.  They hurried in, put him on a blanket and carried him out to the ambulance.  Seconds later, sirens blaring, off they went.  It has been the scariest 2 day of my life!  He received 7 units, the varicies are banded again, we had to wait to see if his kidneys would function on their own, which they are, and just waiting to see what the next steps are.  I am so scared and wanted to share our story.  The liver doctor told me yesterday that each time a person comes in with bleeding from varicies that there chances of making it out of the hospital declines greatly.  Please pray for us.
evangelist55112 evangelist55112 46-50 23 Responses Apr 10, 2012

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I will pray for u and ur husband

Hello, my name is candy im 41 i drinked heavy for 20 years i had no clue this is what i did or was doing to myself. im new with all of this. I was put in the hospital 05/14. I was in there 5 days. As i was being discharged they told me i had cirrhosis . I knew nothing about cirrhosis i have looked up things on the internet now im scared to death. I have told very few people. It seems no one cares, or understands. I cant go to the doctor i have no insurance i have no clue as to how bad it is or what to expect next. It seems the more i try to learn to more terrified i am getting . Thanks for listening .

any anger issues?

Thanks for asking. He's about the same. Very tired & in constant abdominal pain. They drew a bunch of blood on Sep 11. They're going to do a cat scan on Thurs. Then a EDG (scope) on the 27th. We see the dr again on Oct 11. Hope to know more then.

How is your husband doing?

hi, i hope you can understand me,that i too have cirrhosis and it was diagnosed 5 years ago. i carried on drinking ,just could not stop. year 2010 april i was in hospital again only this time i didnt know anyone like my children or who i was and the fear was terrifying. doctors told my family i would not make it as my liver finally stopped working.i was desperate to live. 2 days later my mind cleared and i was fully aware of it all. iwas given blood,had my tum drained and they got 8 litres of fluid. i was very yellow and weighed 5 stone. i stayed in hospital for 8 months being drained of fluid every 10 days. i was to be put on liver transfere list and after tests was told if i dont touch a drop of alcohol i would not need transplant. i have had a few slips but dont want my family to know.i cant stand the constant itching and that is why ive slipped. im very worried and scared of each day. never thought i would even look at the stuff ever. im going AA and have liver tests every 3 months. can you help as i feel i will be found dead any day soon. im desperate.

Christineagm,
Wow, you truly are a survivor! I can totally understand what you have told me here. I do believe as long as you DO NOT drink you will make it. I know the itching is unbearable as Jeffrey went through the same thing and I would put lotion all over is body in hopes it would help even a little. It did, you should try it. Have you had bleeding varicies? Please share more of your story with me. I appreciate you contacting me! I am praying for you.

Dear Heidi, <br />
Thank you so much for sharing your experiences with Jeff and this scary disease. I am sorry that you lost him so quickly and i fear a similar fate for my family and i with my mother in law. We are going to have a family meeting so that we can figure out how to help her. I am not privied to her medical stats but i know that it's bad, another hospital trip tonight after vomiting this morning and refusing to eat or drink all day today. Supposedly she has alzheimers disease, but the more i read i think its hepatic encephalopathy.<br />
I appreciate your posts and will check in to see what else i can learn to help her feel better and to support my father in law as he cares for her, mercilessly.

I'm sorry your mother in law has cirrhosis, it's a hard road. If you have any questions, feel free to ask us, we will attempt to answer them.

Thanks for your support. It's been a little over week now and things have been crazy. Her ammonia levels were so high that she slipped into a coma-like state. Today she finally opened her eyes and things seemed like they are starting to look up. They took her off the respirator and she is now breathing on her own. She seems to have developed every symptom that I've read about... bleeding ulcer in the stomach, confusion, liver failure, poisoning in the brain, swollen legs, coma, seizures, trouble bleeding, pneumonia. I don't know what to expect next??? What else can her body go through? If anyone out there has any similar experience please let me know. The doctors are quite vague about her future and i just can't imagine life for her after all of this. She's on the liquid meds that take toxins out of the body 3x per day for the rest of her life. She's been receiving them through a feeding tube because of the coma, but can she drink that and return to home "normally" at some point? I can't imagine it. What should we expect? My father in law is beside himself and confused with the medical terms so we are trying to learn on our own and ask as many questions as possible, when we see the doctors. Any info is appreciated :-) someone please respond... thank you

any change of personality? or anger issues?

PLEASE PRAY FOR MY STRENGTH TO GET THROUGH THIS. THIS IS THE WORST THING I'VE EVER BEEN THROUGH IN MY LIFE!!!

I'm so sorry you're having a bad time. I must say that I am terrified of being in your position. Not sure what it would be, but let me know if there's anything I can help you with.

cpeplowski,<br />
Unfortunately Jeffrey passed away on 4/29/12. They said they couldn't do anything more to save him. He bled to death in the hospital=(

You are a brave woman, I only wish I had a brave husband. I have hep c but understand that need to drink. i have that myself once in a while. I hope your husband is hanging in there. My prayers are with you.

Please everyone keep me posted with what is going on in your lives. God Bless.

evangelist55112, How are you feeling? hope your doing good. Looking at your husb. pic. he didnt look sick ., People tells my husb. that he looks good, but he says he feels sick from inside.. is getting harder for me going to drs. and see the labs being out of range..i know is getting harder...

I am new here, my husband was told he has cirrhosis 2 years ago at that time he was in the hospital for a month the doctors at that time told us that he was not going to make it, he had 7 bottles of fluid drained and had the banding done and he got better at home he took all of his meds and was up and down health wise but nothing to bad on Mothers day he went back into the hospital and he is still there he does not have any vericies that need banding at this time but his blood is not clotting at all and he has dark purple bruses all over his body his stomach is huge and full of fluid but they cant drain it due to the bleeding problem. I have to work full time and i have 2 small girls to care for at home so i cant be with him all the time and that is killing me i spoke to him a few minutes ago and now he is having problems breathing i am so afraid that something bad will happen and he will pass away and i wont be able to be there to hold him ;(

lovemyhuanie,
My heart is so sad for you. I understand exactly what you are going through. You are in my thoughts and prayers. Please keep me posted as to how he is doing.

lovemyjuanie, welcome to forum , i know exactly what your going thru. I feel same way i need to go back to work. Im so scared to leave my husband alone...

lmendoza,evangelist55112, my husband passed away 8/4/12 he developed a bleed in his brain he had surgury to remove the blood along wth alot of platelets and plasma he was doing really good and was waiting 4 weeks of rehab and then to get a liver transplant he was transfered to a hospital closer to where we live for the rehab and the first day that he was there the hit his head on the railing of the bed causing it to bleed again and this time they could not get it to stop so i got him home on hospise on 7/26/12 i knew he was going to die from this so i just wanted to make sure he was home with me and he was safe and no one could hurt him again. This just all seems like a bad dream and at times my heart hurts so bad he was not just my husband he was my best friend we did everything together ;( My heart goes out to all of you i know how much we just want to love them and make there pain and sickness go away

Im so sorry to hear that about your husband.!! ;( I can only imagine what you are going through. Im so scared to b/c my husband platelets are at 48 and Dr. dont say much.. they keep dropping every 2 wks ..and he has being having bad stomach aches .. I dont know what going on.. His GI Dr. said that my husband looks stable for right now... It is very hard when you want to help but there so much you can do. I hope you keep strong for your girls.. he is in a better place now...

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so sorry to hear about your husband :(.. i have auto immune heapatitus since i was 16.. but in 2008 was my first bleed with the varcies is my osephagus i also get banding.. ad my second bleed not so long after but dat was from a ulser dat ad deleloped as the bands were on too tight, i have been good so far but im on a lot of meds.. its so scary i have not been right since im scared to do anything on my own as i was on my own driving wen i ad my bleed it was a fella that found me unconcious.. im scared all the time

heln2k9 I'm so sorry to hear about your health problems. It is a very scary thing to see someone go through. I can understand you being afraid all of the time. Thank God that fella found you and I assume you went straight to hospital. Feel free to ask me any questions that you have. God Bless.

evangelist55112 , was your husband sick all the time and tired..? did he drink every day? My husband drinks wine every day .. even though dr. told him last year that he couldnt have one drop of alcohol. and he was diagnost with lupus aswell.. his getting some infusion for lupus. his getting evaluated for transplant in june.. i know he needs stop drinking. sometimes i get upset cuz i feel like he doesnt want live.. but if he doesnt have his wine he gets grumpy and upset.. i dont know what is going on thru his body cuz he says he feels like his burning from the inside..

lmendoza,
YES Jeff was sick to his stomach all the time and couldn't eat and he wanted to sleep all the time. He did drink everyday BEFORE he was diagnosed with cirrhosis and then did not drink one drop after the March 19th diagnosis. Sadly, we will never know or understand what is going on inside your husband. He should quit drinking because that is not allowed for a transplant. Please keep me posted. My thoughts and prayers are with you. God Bless.

evangelist55112, My husband stomach hurts and he has one small meal a day..He only stopped drinking when he was in the hosp. He drinks n feels better.. 2 days ago he had rectal bleeding again.. yest he didnt bleed.. why does he bleed from rectum if is hemmorhoids where banded..

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How do I sign up to chat with you guys?

just send messages like you just did=)

Cirrhosis is the craziest experience I've ever had. Like many others we had 3 hospital visits before we really found out what was going on. Thank goodness we now have some information & a plan & know what warning signs to look for. I don't mind telling you I am scared of this bleeding thing. My fiance had 6 liters of liquid taken out of his abdomen from ascites. He's on aldactone & lasix & lactolose & several other drugs. Our biggest problem is that his stomach is so upset all the time. He's nauseated & has severe cramping most of the time. Does anyone know what to do to aleviate the severe nausea?

there are meds for nausea, talk to dr. My husband was drained 4 times. 4 liters then 3 then 3 then 4.9. Isn't that so scary? Jeff was on the same meds you mentioned. Want to chat?

my husband hasnt had any fluid drained from is belly that means is liver is still functioning right? he is on diurectic pills, lactolose , metformin for sugar, how i know what stage he is in?

That is a good thing. My fiance had 6 liters drained from his belly. At the very least it means he's handling the disease well. I asked my fiance's doctor wheat stage he was in &amp; he said if you have cirrhosis, you're in stage 4 of liver disease.

T

My husband got disoriented and vomit this morning. this desease is so confusing.. i dont even know if i can work anymore. we waiting on social security taking while..

I'm sorry to hear that. You're right this is the most confusing disease I've ever met up with &amp; there's very little information available about it. We're also starting the SS disability process. I hope it's smooth &amp; doesn't take long. I assume your husband didn't vomit blood thsi morning.

No, no blood thank good..! he has good and bad days.. SS is taking about 1 yr. they rather you die before you get it. my husb. served his community for 30 some years n know that he needs help.. denied .... I guess your dr. is more open with you cuz my husb. gi wont talk about what is really going on.. just keeps saying this desease is serious. my question is if you are in dauretics that means you wont get fluid in your belly right.? whas your husband in some kind of dauretics before he had fluid drained.? thanks for your response.

Jeff was not on any diuretics the first time he was drained because they were worried about the effect on his kidneys. Diuretics are hard on the kidneys. I agree with blueeyedlady as to being in 4th stage if you have cirrhosis.

thank you so much , if feel good talking about it and knowing that im not alone with husband that is going thru hard time.. Im going for 2 yrs of marriage, and last year has changed our lifes.. on dec he was admitted in the hosp. of rectal bleeding it was weird cuz they could find where bleeding was coming from but then suddenly he had all this hemoroids and was bleeding from them.. he had a endoscopy done his varieces are grade 1, and 5mm can he stil bleed?

Rick wasn't on any diuretics prior to being drained either, but just because he is now doesn't mean the fluid won't come back it just helps keep it to a minimum.

Things were going fine for the past few days then all of a sudden he got real tired &amp; today fell on the driveway. He didn't have enough strength to get up, so had to get some neighbors involved. He has some scrapes &amp; a goose egg on his head, but no serious damage. i think his ammonia is too high, going to hit the lactalose tomorrow. It's alwasy something with this disease.

sorry, to hear that , my husband is always tired and sometimes he doesnt have strenght to walk.. like i was saying i dont know if i should go back to work cuz you never know how he will wake up. his your husband going b placed on a transplant list?

I know what you mean, Rick sleeps a lot &amp; he's still tired all the time. He gets frustrated about it. He didn't have enough strength to get up from the driveway when he fell last night. I try to get to work every day. I figure it will get worse &amp; he'll need me more.

Rick hasn't been sober long enough to get on the trasplant list, but that's what the doctors keep talking about. his next doctor appoint is Jun 20.

Only thing we can do is taking on day at time. My husband hasnt been sober either. Good luck in ur appt.

I agree 1 day at a time is all we have. I'm sorry your husband is still drinking. Did they tell you to watch him when he does cut down or quit? He'll be at risk for seizures &amp; hallucinations &amp; other withdrawl symptoms. My fiance had to be hospitalized for 4 days when he cut down &amp; then had to quit.

no they havent told us anything that this might happen if he quits...my husb. hasnt quit yet. he also was diagnost with lupus his getting some iv infusions..

Hi! How are you doing haven't heard from you since June hows everything going ...?

Hi. Thanks for asking. Rick got to feeling better &amp; I got excited. On our way to his 1st check up he told me he'd had a few drinks. I was hurt &amp; upset with him. That evening he started getting sick again &amp; was sick for a solid month. Sick to his stomach &amp; his belly is so full. He finally started feeling a little better at the end of July, but he's so weak &amp; shaky. Lately his veins have started to bulge out on his stomach &amp; legs, it's creepy. He has not had a drink since mid June. We're going to our 1st visit with the liver doctor on the 14th. I'm pretty sure they tap him again &amp; drain his belly. I think they're going to scope his esophogus too.

How have you been? How's your husband?

Im glad he is doing better. Hang in there...! My husb. is going what Rick is going thru with weak and shaking he stopped drinking in june. we wants to be evaluated for the liver transplant in dec. how weired about the the veins bulge my husband gets them like that sometimes...he also getting a ct scan of the liver cuz dr. is worried about something that came out on blood work. Waiting on that... keep in touch and fill me up w info. that will be helpful to understand this desease....i will keep in touch too. thanks and take CARE!!

Well, not good new at the dr. today. They drained 9+ liters off his abdomen &amp; administered 2 bags of Albumin. When he got up, he couldn't breath &amp; had chest pressure. They did an ekg &amp; it was a little weird. They admitted him to the hospital. They're giving him a lot of Potassium &amp; Magnesium &amp; hoping that it will help.

I got freaked out when the dr asked him about a DNR &amp; the nurse mentioned "end stage liver disease". It just seemed so real that I'm going to lose him &amp; much sooner than I'm ready to. :((

I feel for you, i just can't imagine what your going thru,,,:( there is too many questions to ask and it seems like no one has an answer for them or what should we expect.,Give him all your Love they need it when they are in hospital.. stray strong. IsDNR for diagnostic? how are you doing today,.?

Things are better today. Turnes out his Laxis was leaching potassium &amp; magnesium from his body. Normal magnesium is supposed to be 2.0, but his was at 0.10 when they admitted him. They pumped him full of magnesium &amp; potassium &amp; he's doing a lot better now. He talked to several doctors &amp; understands a lot more about how the food &amp; meds &amp; his body works together. So we're hoping for the best &amp; back on track. He has a consultation &amp; blood work appt next Thurs. They're also gonig to schedule a scope to check out the blood vessels in his esophagus.

Unfortunately a DNR is a Do Not Resusitate order. They were anticipating him going into cardiac arrest because of the super low magnesium level.

Take care &amp; I hope all is going well on your end.

Im glad he is better and they didnt keep him in the hospital.and that things go good on his scope appt. you are his biggest support.. Seems that Rick and my husb. are in same stage of this desease... My husb. is in pottasium pills and magnesium now i know why... b/c of the dauretics .. Drs. sometimes dont explain whats happening in their body. My husband is going in 2 mth. without drinking sometimes it gets hard with his moods changing constantly ... :( keep in touch... thanks !!

How is your finace doing?

Hi. Hope you all had good Thanksgivings.

Just thought I'd update you. Rick was in the hospital again in Sept, they drew off another 10 liters of ascites from his abdomen. He's developed a very deep cough with lots of phlegm that causes him problems. They did get him scoped (EDG) &amp; said they could see enlarged veins in this esophagus, but they aren't bleeding. They started him on a anti-hypertensive drug to help prevent bleeding. We have another appointment on Dec 6 for another draining, this will be his 4th in 8 months. It's been a long road since he was diagnosed in April. We did get married in October.

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my prayers are with you and your family, i am sure your husband will be deeply missed.

After our 4th stay in ICU, the love of my life for 19 WONDERFUL years, Jeffrey Brian Evangelist, passed away yesterday 4/29/12.

hi, evangelist55112 , im new at this forum, and im so sorry to hear about your husband, Im going thru a familiar situation with my husband..

Hi lmendoza, would you like to talk about it?

email, phone, what ever is best for you.

Hi, evangelist55112, I know you'r going thru hard time now, but i thank you for responding. I just cant believe im sharing my story, it is a very hard disease and complicated.
I got married in 2010, my husbund was diagnost last year he already had episode of rectal bleeding in dec. was in hosp. for 2 wks. Im so affraid to leave him alone and he may have an episode of drowing up blood, he has some esophageal varices and he has cherry spots in is stomach i dont know what that means..what are thes signs of bleeding thru mouth and why does it happened. sorry,, too many questions...n confused.

The only thing you can look for with varices is vomiting blood or blood in stool. There are no warning signs which makes it so scary! Thankfully I am unemployed right now so I was able to be with Jeff and called 911 when needed. I truly feel for you. Cirrhosis is the most scary thing I've ever experianced.

Please keep asking any questions you have and hopefully I'll have answers.

The vomiting of blood is because the esophagel varices are bleeding. The stomach can't handle the blood in it, so the person vomits. These varices can be banded but this does not guarantee there will be no more episodes. Jeff had banding 3 times and the last time he had bleeding his esphogus was ulcerated from the banding they couldn't do anything for him and basically bleed to death. I don't mean to be so morbid but this is how it happened.

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It is with a heavy heart that I tell you my husband, Jeffrey, passed away today.

I have liver cirrhosis for nearly 3 years now doctor recommends me to do liver transplant. I know clearly how hard it is. He must having hard time. I pray for him !!!

Camdodiagirl sorry for not getting back to you sooner. I wanted to check in and see how you are doing. Please keep me posted. You are in my thoughts and prayers. God Bless.

I know there are people on this site because I am here. My cirrhosis has not advanced to that stage yet. OMG is this going to happen to me? I pray for you and your husband is all I can do. I do not know what to expect myself. My doctor only tells me I need a transplant and Hep C is what caused mine but I too drank beer for 18 to 20 yrs. I was misdiagnosed as Hep B. If only I knew then I could have gone for a regiment of shots and fought it before it got me.

Thank you Serenity9 for replying!! I so appreciate it! Jeff was discharged from the hospital yesterday and I am so afraid and keep watching him and asking if he is okay. I know he's sick of me asking but how do I know whats going on with him? What type of meds are you on? My prayers are with you.

On the 19th Jeff had blood in in stool, called 911 again. He is in ICU as I type. Does anyone ever read anything on this sire? I would like to converse with someone who has had an experiance with this.....waiting....

We came home from a 6 day stay in the hospital. So far so good. Jeff is on Lactulose 3 x day, Xifaxan 550 2 x day, vitamin k for a month, multi vitiamin 2 x day, Altactone 25 mg starting in a week because kidney dr wanted to wait and a small pill for stomach pain/itching when needed. We are so scared the varicies are going to bleed again. What can we expect in the near future? Any advice is greatly appreciated.

Thank you valcast, as my prayers are with you!

i have cirrhosis with esophageal varicies, my prayers are certainly with you both,