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MY NIECE IS DYING FROM CIRRHOSIS OF THE LIVER. PLEASE HELP.

My nice is only 26 years old and is fighting for her life in the ICU as I type.  Her liver has failed and she has cirrhosis and hepatitis C.  She is skin and bones, was vomiting blood, doesn't eat and very weak, just mumbles when she tries to talk.  She is an alcoholic and is not eligible for a liver transplant.  She has no insurance and the social worker at the hospital said she wasn't eligible for Medicaid.  The doctor has given her a 50/50 chance for the next 30 days.  Is there any hope that she will make it through this and live?  She has had this happen twice before but recovered somewhat but never completely.  
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4806014 tn?1424501878
It sounds like your sister needs to know that she needs to be transferred to Vanderbelt liver center ASAP so she will hopefully have a chance to survive. What the GI doctor is telling your sister seems untrue,your niece needs to be treated by a hepatologist at this point, and very soon. They will take care of the insurance and paperwork at the transplant center once she is there. Love and blessings to you all.
Helpful - 0
10805050 tn?1420935520
I am so happy for your niece, and for you and the family.  And it looks like Nan535 had the answer to your coverage problems too.  What a blessing. Your niece will need coverage, not only for a transplant center, but for the many prescriptions, and regular PCP care.  Liver Centers are a much better level of care specialized for your Niece's needs

My hepatologists is a Transplant Surgeon for the UCSD Liver Center, and I'm very lucky to have him.  The Doctors in the Liver Centers have specialist RN's and NP's that can help you with just about any problem, with a phone call.  

Again, I am so glad that your niece is moving in a positive direction. Please keep us posted. And Post any questions you may have. You will remain in my prayers. I wish your family the best.

Andy
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Avatar universal
Nan, thank you for the link and the thoughts and prayers.  We will check into the health care enrollment for her.  I'm sure we would not be able to transfer her to a transplant center without it.  She seems to holding her own right now: not a lot better but no worse.  Again, thank you so much.
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Avatar universal
Oh Andy, thank you so much for the information and for the testimonial of your trials through this ordeal.  You have been through much and now here you are helping others.  You are such a good person.  Cassie is a little stronger today.  She pulled her feeding tube out of her nose last night and repeatedly tried to get out of the bed.  They had to restrain her in the bed to keep that from happening.  Her mother told me they were going to put her in a regular room today and that scares me somewhat because she will not get the amount of attention there as she is getting in the ICU.  She has not been vomiting any blood any more and seems a little stronger.  A surgeon came in and told her mother that she had gall stones but could not do any surgery because she would bleed to death on the operating table.  Thank you so much for your concern and prayers.
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Avatar universal
https://www.healthcare.gov/apply-and-enroll/get-ready-to-apply
Beginning November 15, 2014,  open enrollment begins for health insurance for 2015 under the Affordable Care Act. I would try to get your niece some medical insurance. She really should see a hepatologist at a transplant center. They know how to best treat her liver disease and it's complications.

I am feeling very sad for her and I hope you will be able to get her the help she needs.  You are both in my prayers and thoughts.
Nan
Helpful - 0
10805050 tn?1420935520
Hello again.  

I hope this note finds you and yours a little better today.  Something that may help you better understand the situation would be to ask one of the ICU nurses the cause of her bleeding (they should be able to give you a printout of what diagnosis they are striving to treat).  It could be from many things but the two major issues with alcohol related bleeding from the mouth would be Ulcers and Varices Vein ruptures (and/or Esophageal tearing) secondary to Portal Hypertension (most common in repeat bleeding).  Both can be treated with different types of Endoscopic Surgery and Epinephrine. However the latter, Varices and other complications such as Ascites must address the Portal Hypertension

In laymen's terms, Portal Hypertension is caused by pressurized blood from the GI track traveling thru the Portal vein to the liver. Upon entering the liver, scar tissue prevents the entire amount of blood volume from passing thru the liver for synthesizing and detoxification, and it's normal exit thru the Hepatic vein to the heart.  This backed up Portal Pressure (Portal Hypertension) seeks other passage around the liver, and the next in line are the veins lining the Upper GI Track (stomach and esophagus). When these veins swell they are called Varices, and they are highly susceptible to rupture.  It happened to me on three different occasions causing severe bleeds.  

They can use various medications such as Beta Blockers to try to control this. Or, as was the case with me, they may feel a  "TIPS" procedure to be warranted.  Without getting into the technical details, a TIPS procedure, by use of a vascular shunt, bypasses some of the blood from the Portal vein past the liver  and on to the heart, hence correcting the Portal "Hypertension". This is normally evaluated and preformed by an Interventional Radiological Surgeon.  It's primary purpose is to reduce the secondary conditions and hold over individuals till transplant.  

For me, TIPS worked well, and relieved a whole list or problems secondary to my cirrhosis.  It greatly improved my overall condition.  I will always have End Stage Liver Disease.  I still suffer from chronic anemia a year later, it takes time.  I still have good and bad days. But my liver is compensating, as opposed to decompensating, and I'm out and about every day.  

There were plenty of weeks I went thru last winter with that 50/50 (or worse). The best thing I can say is to do is take it day by day. She has your love and support. Let it be known to the hospital staff that she has family that greatly cares. And remember, your niece has youth on her side. I continue my prayers for both of you, and wish you the best.

Andy
Helpful - 0
Avatar universal
Nan, thank you for your response and concern.  In answer to some of your questions, no, she has not been seen by a doctor in a transplant center.  The doctor she is seeing is a gastroenterologist and he is the one treating her.  I'm not sure about all the tests she has had but I know she has had a lot of them.  Right now she is on a pick line and a feeding tube in her nose for meds and nourishment.  I ask if we could get her insurance if we should move her to Vanderbilt in Nashville, TN but he said they most likely would not take her because they would say at this point she is getting the same kind of care where she is that she would get there.  It is so very sad that she is so young and this is happening to her.  I just don't know how to help.  Thank you so much for your concern.
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Avatar universal
Thank you so much Andy.  I've just never been around anything like this.  She was on her mother's insurance until last July when she turned 26.  It is hard to understand her when she talks but I did understand her to say she was scared and would never touch alcohol again.  She has been in the hospital twice before and her mother nursed her back to relative health, considering she is bulimic and anorexic.  It is hard to believe at this point that she will be able to recover.  How long can you live when the doctor says you have liver failure?  He said at this point she needs a transplant but of course that will not happen until she is alcohol free for six months.  As long as she is this sick she can't get her hands on alcohol.  It is when she starts feeling better and movies out of her mother's house that she goes back to her old ways.  She would not even consider going to a treatment center when she was on insurance and now that she doesn't have insurance I'm sure that they can't afford a treatment center.  Again, thank you for your response and I hope you are doing well.
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Avatar universal
Has she been seen by doctors  at a major transplant center? Please provide a little more information so we can offer you some advice on how best to proceed.  Is the doctor who advised you she has a 50/50 chance a hepatologist? What medical tests has she had? Her symptoms are indicative of advanced cirrhosis (end stage liver disease) but only a hepatologist can make that diagnosis for sure. So sorry to hear this is happening to such a young woman.

Nan
Helpful - 0
10805050 tn?1420935520
I have bled several times, and I'm here and slowly doing better. You must take it day by day. Many of use have been in this situation, and made it thru. Without further information I can not say with any certainty what is going on with her. I know from experience, when you bleed it takes your body quite some time to recover from the sudden deficiencies, and follow-up care is absolutely necessary. Follow exactly what the doctors tells you. Get the hospital to supply as many meds as they will let you take with you. (You would be surprised how generous they can be).  I hope your niece has stopped drinking. Removal of the underlying cause is always the first best step. I was put on my Liver Centers Transplant list because of a high Meld Score and just 6 months of sobriety. I don't know much about the new health care laws, but something should be available and I believe this is the time of year for open enrollment (with no pre-existing condition exclusions...I thought that was a big part of Obama Care). Work the Social Worker hard.  They want you to have some type of coverage as well. I will include you in my prayers, and welcome you to contact me.  Andy
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