Varices

Hi everyone,

I am having a really bad day.  My husband has esld.  He has had his varices veins in his throat and upper stomach banded 3 times.  He does not want a transplant.  He has coughed up blood a couple of times in the past 2 weeks and now he has a dark stool.  He won't go to the doctor or hospital.  I don't know what will happen next.  I don't know what to do!

Hi 1Moreday! Welcome! I have had similar problems with my mom and have been dealing with the Varices with her since 2003. I guess my first question would be when was his last banding? I have heard that at times there could be only one bleed that will clot on its own, but will still need to be looked at. Especially since he is coughing up blood and passing dark stools.
My mom had her last major bleed in August of 2010 and at that time she had too much scar tissue to band, so they had to inject her with a clotting agent. In Aug of '10 she felt the same way as your husband, but when it was put to her that she will die if she has another bleed or doesn't have a transplant in a minimal amount of time (statistically 2 years). It took her a couple of months of decline and she changed her mind. We just went yesterday and today for her transplant evaluation and although she is scared, the doctors didn't sugarcoat anything and she realizes the severity.
Sometimes denial gets in the way of making decisions, but I hope your husband will turn his decision around. I am not sure if he is a drinker, but it is imperative that he stop. My mom did really well for a period of being sober until she couldn't sleep due to ascites. She would then sneak alcohol so that she could sleep. This frusterated me to no end! I think at this point the realization of the alcohol has hit her. It's unfortunate that situations like these change people when they are at their scared streight level, but good at the same time that they still have life left. Ultimately alcohol will kill them!
I wish you the best and although right now your husband may be stubborn, hopefully the reality will make him change his mind as it did for my mom. At first she had the "I will get better" attitude b/c she had so many bleeds previously, and now that isn't the case she has reconsidered and changed her mind.
Best Wishes!!!!!!
Kim

Post Edited By Moderator (hep93) : 7/15/2011 11:58:13 AM (GMT-6)

LOL....blonde moment + Stress= kim giving wrong dates.......Aug 2010 is the real date :)

My husband has been fighting this for years.  His last banding was Aug 2010.  The Doctor wanted to do it again in November.  But my stubborn husband said no.  He is still a drinker.  I don't understand that either.  He has had bouts with EH and he has been in the hospital a couple of times.  This January he had a bout with colits.  You just can't help someone if they don't want to help themselves.  The bleeding really does scare me because he has a low plattlet count. I really think he has given up.  He is so depressed because he can't work anymore and he feels like he's worthless. Can I force him to go for treatment in any way?

 

Kim will keep you and your mother in my prayers.  Thanks for your post.

He will be 49 next month. He was diagnosed with Cirrohis in 2003. He does tak bp meds and Prilosec for acids.

Way to go! I know how hard it is to loose weight. I have struggled with it all my life. I will pray for you Susie.

I don't think I gave a good discription of my husband condition. He has Hep C, cirrhosis, enlarged spleen, upper portal hypertension, varices, epelipsy, hight iron count, elevated liver count, colitis, low platelet count and bouts with HE. He used to never go to the doctor and now he has had to go for the last 6-7 years. He tried treatment for the Hep C but it didn't work. He quit drinking for about 6 months but when the dr. said it was time to be put on the transplant list he fell off the wagon. He says he dosen;t want a transplant because he's had a good life, he's tired. When I had to take him to the ER the first time for the varices, he got up that morning and was getting ready to shower when he got sick to his stomach, then he called my name and said that I may want to take him to the hospital. When I got to the bathroom blood was everywhere. I couldn't believe how much there was. I had no idea that this could happen. It scared the living daylight out of me. When we got to the emergency room he was still throwing up blood. He was rushed to the OR and banded. He was there 4-5 days. They did the banding and told him to STOP drinking. Now he refuses to see the gastro dr. and dosen't want anything done about the varices that are now bleeding again. What will happen next? I'm so scared that I will go home and find him in a pool of blood. Any guidance?

1moreday,

Is he scared about a transplant? God knows I go through phases where I am petrified! But I want a life without the debilitating effects of ESLD and cirhossis.

I have an enlarged spleen, low platelets, portal hypertension, and HE. I am fortunate, and my varices are small and have not bled yet. I did have a clot in my portal vein and the vein's blood flow was compromised. I had to have the tips procedure in February to remove the clot and restore the vein's patency. The portal vein has to be viable for transplant. On top of my liver problems, I also suffer from painful, recurrent kidney stones and UTI's and was hospitalized 4 times since December for my urological problems.

As to the bleeding varices I have no direct experience. I was on propranolol to prevent my varices from growing. Since th e tips, I no longer have to take it. I would talk to your Gastro doctor if there is more you can do to prevent them.
Sometimes it can feel overwhelming, but there are people in this forum who are willing to help him. There are also very compassionate caregivers who can help you cope with his disease.

Post Edited (susie_sassafrass) : 7/15/2011 12:02:41 PM (GMT-6)

My husband's GI doc says that vomiting blood should be a call to 911. That there is a 50% chance of DYING from a varices bleed. With liver disease, the blood clotting is compromised. I hope he will change his mind and go to the ER!

For a while I stopped going to the GYN, I didn't want to be lectured about my weight or to get on the scale. My doctor (who I LOVE!) said he would rather me come to the doctor and REFUSE to be weighed than to not come at all. So...along the same lines...tell your husband to get to the ER to take care of the bleeding and not discuss drinking or transplant. Take care of the URGENT problem that is going on now. Discussion of the others can happen after the varices are calmed down.

Emma

You said: 

I don't think I gave a good discription of my husband condition. He has Hep C, cirrhosis, enlarged spleen, upper portal hypertension, varices, epelipsy, hight iron count, elevated liver count, colitis, low platelet count and bouts with HE. He used to never go to the doctor and now he has had to go for the last 6-7 years. He tried treatment for the Hep C but it didn't work. He quit drinking for about 6 months but when the dr. said it was time to be put on the transplant list he fell off the wagon. He says he dosen;t want a transplant because he's had a good life, he's tired.

Gasp: 

My Mike has a twin!  If you rolled the posts back to summer 2010, you would have described OUR life!

Hep C

Portal Hypertension

Not varices -- his were in his small bowel!

Intermittent high Iron Count

Cirrhosus

High Blood pressure

Edema til he legs wept fluids and bloody junk

Dangerously low blood sugar

Low Platelet Count

Hepatic Encepalopathy

Episodes of Acute Renal Failure, with coke colored urine.

and a life long alcoholic.  He quit drinking during an unsuccessful Interferon/Ribavarin treatment in 2003. Then after a few months of continued sobriety, started daily drinking all over again.

He would not listen to me, his kids, his body.

Until he was so sick, he thought he would die. He'd said things like -- I'm just dying here, might as well go out happy!

Not so happy he was when on vacation with 3 little kids in a hotel room with us and him up pooping blood all over the bathroom and us trying to decide whether to call the ambulance or hope it would stop!!!  And trying not to wake them up and scare them to death.

That was August 2010.  Now he has been sober since September 2010, went to AA 4-6 times a week, took all their potions -- lactulose, 2 kinds of diuretics, blood pressure stuff, xifaxan, etc etc.  And did a transplant evaluation. When his hepto cellular cardinoma was diagnosed, he got really scared. But as luck would have it, within about 8 months of his sobriety, he got the call for transplant.

And 10 weeks post transplant, he can say he is feeling better than in years. He is clearer mentally and gaining physical strength every day.  No golf yet and it is unlikely he will return to work.  He is 61 and collect Social Security in the fall.

This can be turned around.  If it isn't too late.  I wasn't for Mike. 

I hope which every way this turns out that his path is without long suffering.  The night Mike went in to surgery, they talked to him about potential problems and possible adverse outcomes. He told the nurse that he couldn't go on this way any longer, so he was prepared however it turned out. And I agree...he was done!

Best,

Mama Lama

Look over my old posts...it's all there...the good, the bad the ugly...none of this happened easily.

amen