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Worried about Sister with ESLD likely from alcohol abuse

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Posted 11/10/2015 2:14 AM (GMT 0)
I'm writing with questions in regards to my sister. She is in her late 50's and started drinking when she was 14 yrs. old. To say she drank everyday since that time would be correct. Four years ago when she was 55 yrs. old, it all finally caught up to her. To start, she was vomiting up blood on a daily basis. Then she ended up in the hospital with extreme ascites all over her body. She looked like she was 12 months pregnant with triplets - so it was described to me. She spent 10 days in the hospital and was told never to drink again or she would die. She was a walking skeleton for many months after they drained the toxic fluids from her abdomen. She remained yellow all over for many months afterward. She went on a low-salt diet, ate good foods, saw her doctors, nursed herself back to health and has been somewhat trouble-free until maybe a year ago. I never knew the exact diagnosis - but I think it's safe to say she had alcohol related liver disease. She was never forthcoming about her situation. I found out the details from a good source who was looking out for her. She lives 1500 miles away. I have only seen her one time in these past 4 yrs.

My question is this: Since I never knew her official diagnosis, it is difficult for me to understand what may be happening with her now - 4 yrs. later. We have a mother who has health problems herself at 90 yrs. old and is worried she will never see her daughter again. I feel that my sister has had some health issues recently - maybe some kidney problems. I know in talking to her occasionally that she is on a diuretic and cannot sleep lying down on her back because she has trouble breathing. She uses a wedge. I am wondering if she has ascites again and this is why she can't sleep comfortably on her back. She will never admit that she almost died 4 yrs. ago and we never ask her. We do respect her privacy, but are upset she never wants to see us. We are not on bad terms and have never brought up her drinking problem even though we tried 2 interventions during her lifetime many years ago. Our interventions never worked in getting her help however. I don't want to be hard on her for not wanting to visit us if there are some physical problems she may be having with her liver. We cannot travel to see her - she doesn't want that anyway. My mother would not be able to travel that far at this point. Perhaps someone can shed some light on this so I can better understand where she may be at in this disease. I don't think she is drinking again, but I can't be sure.

**I just checked my profile and realized I had written about this 4 yrs. ago when all this happened. I forgot that she was diagnosed with ESLD at that time.

Post Edited By Moderator (MamaLama) : 11/11/2015 9:31:44 AM (GMT-7)

Posted 11/10/2015 4:41 AM (GMT 0)
Hello and welcome Sister, Sounds like your sister and I have similar stories. I'm guessing you can't elaborate more on her condition over the last few years or what if any surgeries she may have had after her diagnosis. It's hard to nail down what is really going on without more medical history. Please try to do more prying into her meds particularly. Diuretics are hard on the kidneys but that's the only way she will keep the fluid off without surgery. Just guessing, She has someone helping her sort out her health issues locally?

My opinion of whats going on currently is either she relapsed into addiction or she may have just simply built up immunity to diuretics. Possibly both. Rarely does someone retain as much fluid as she and I did without toxins like ammonia building up also. This will make her unstable mentally. It's technical name is Encephalopathy. I'll post a link to a short movie to help you understand reason for her behavior. She likely has been taking Lactulose or at least has been prescribed for it. Another great but costly prescription docs prescribe to help release the toxins is Xifaxin.

She needs to have completed her verified six months of sobriety prior to get anything close to a transplant. Six months verified means either consecutive signed off AA by a sponsor or a addiction counselor (Shrink). She will likely suffer until that requirement is met. TIPS is about the only option she has to get relief from Ascites (fluid) at this point. TIPS is a shunt that's placed in the liver to bypass her liver function essentially. The Shunt is inserted into a main artery in the neck and maneuvered surgically all the way down to the sick liver. I had this done around 5-6 years ago once my pre-transplant requirements had been completed. Pre-transplant requirements means the documented sobriety and a "flip you inside out" bill of health check. I myself looked like a skeleton with a basketball in my stomach cavity. Twenty four liters of ascites removed by Paracentesis procedure a week just prior to TIPS being done.

I currently have very little trouble with edema in my legs. I take no diuretics. A low sodium diet is a must. I take Lactulose and a alternative to Xifaxin roughly three times a week to get rid of the "foggy head" Encephalopathy. I still have sleep issues and take a med for that. I get a bit anxious and slightly jumpy so I take a Serotonin modification med also. I was diagnosed in 2008 with ESLD due to Alcoholism. I was told at that point I had three months max probability of surviving when I came out of a comma. Renal failure and a destroyed liver. I left the hospital with full expectation of certain death. It's tough on us addicts to overcome our addiction and fight to stay alive at the same time. The urge to self destruct is hardwired in our souls. One of two things will happen. She will die or she will fight the hardest battle she has known while deathly ill. If she makes it she'll have a new life that she appreciates more than words can say. That's enough for now. I'll post that link to the movie on a new post to you.
Posted 11/10/2015 4:47 AM (GMT 0)
Here's the link www.hesback.com/.



Ziff
Posted 11/10/2015 4:13 PM (GMT 0)
Thank you so much for your quick response Ziff. I have such a heavy heart now. I watched the film you linked. It's an eye-opener. Thinking back on the last few years, and the lack of communication at times, I can fill in the blanks as to why she was out of touch. We know little about her life and what meds she has been on. She has been down and out a few times and we have sent her money. We have thought at times that we were enabling her to drink again by doing this and have tried to hold back when she calls us for money. We think she is on the county medical plan for indigent people. She says she sees the doctors in one group once a year. There is so much we don't understand or believe. I have contacted her friend, who tipped me off 4 yrs. ago when my sister was forced to go to the ER. I say forced because she was still in denial about her condition back then even though she could hardly walk and couldn't even put on a pair of shoes because her feet were so swollen. And still my sister fought her friend tooth and nail about going to seek medical intervention.

Now, 4 yrs later, I can see why she can't keep a job for more than 3 months. She is currently working from home and she is unhappy about it. I asked her friend to meet up with her and let me know if she appears swollen again, or is yellow. But I think I should ask her to let me know if she thinks my sister's actions are off due to HE. My mother and I both felt for the longest time that she was bi-polar. She is up and down in her moods - even though her contact is few and far between calls.

I don't believe she ever went to AA. She is in denial about everything. She will never admit that she had a drinking problem. I would look after her if she lived closer. I can see that she is indeed in a bad way. I will see what her friend has to say. I hope my sister keeps her appt. with this friend. I will keep you posted. Thank you
Posted 11/10/2015 7:44 PM (GMT 0)
Eerily, the same way I wound up at the ER. I was employed as a Overhead crane tech/Iron worker. Done that for 28 years never took vacations or rarely got sick enough to call in work. It started in my feet. Woke up and couldn't get my feet in work boots one day. The next day I couldn't walk with the swelling and HE, Renal failure and eventually comma. I went bat crap crazy once I woke up. Couldn't tell you where I was or how I got there.

It stinks not doing the job I thoroughly enjoyed all those years. Felt worthless and a leech to society for along time after my diagnosis. I think everyone goes through some level of self pity and shamefulness given those circumstances. Between the sickness of ESLD, Getting a handle on my addiction and self worth issues at the time all I wanted to do was die. A friend found this forum while researching what ESLD was. He'd come over and share what he learned and kept my spirits up. I eventually started posting here in 2008 as another screen name. I don't know why Connie put up with my nonsense. I'd type away and make no sense to anyone. My head was scrambled and speaking a complete sentence was hard enough let alone typing. Connie by the way was a moderator here on the forum, Hep93 was her screen name. She was a non practicing addict and had Hepatitis. Three people and one a total stranger (Wife, Friend and this incredible woman Connie) helped me fight to stay alive.

This forum has been more like a dysfunctional family for me. I've laughed, Cried and stomped out more than a few times in anger or protest over the years. I always found myself back here. The dept I owe to Connie for her investment of time demanded I return and give that gift back to others as she unselfishly did. I have free time now so I'm giving back to the community. Surely I will show my ass here from time to time as always. I'm not as tolerant as others but I mean well. I wish I could give your sister and others the same gift. I've learned to a big extent that the majority of alcoholics/addicts don't make it. They self destruct or have enablers that permit the very behavior they despise. I say these things in hopes you'll understand the difference in enabling and helping. Real change only happens when a person wants it. Not one foot in and the other out. Both feet in with no exceptions. Painfully we have to sit and watch from a distance as someone we love drowns.

It hurts to say those words but far worse is the havoc created by a hell bent addict on the caregivers. Seen some horror stories here. Dragging children through the emotional wringer right up to highly educated grown ups. Indiscriminately scaring everyone they touch clean to the soul. You can only do so much. Do what you can when you can and always trust your gut when decisions are made to get involved to deeply.


Ziff
Posted 11/11/2015 4:44 PM (GMT 0)
Sisterhood.

This is going to sound crazy, but the horrible ER visit where my partner, Mike, faced his maker straight on, was what made the difference. There he was with a MELD of 26, sepsis, acute kidney failure, and given 90 days to live. He had Alcoholic Liver Disease AND Hep C. And he was dying for sure.

BUT, the doc gave him the BUT. There was a chance, if he stopped drinking, AND was the luckiest dude in the hood.

Evidently he was the luckiest dude in our neighborhood. Nothing I did or said, or begged, or threatened, or moved into the guest room, or cried, or went to stay with the kids, or whatever made the difference. Realizing he was killing himself was the miracle. And that he wanted to live. I had been thinking he wanted to die.

His Meld dropped into the teens with sobriety and then he got another LUCKY BREAK. The guy was diagnosed with liver cancer.

Now that was pretty scarey. BUT, he got some exception points (which are calculated a bit differently these days) and rose higher on the Transplant List. Not that anyone wants a cancer diagnosis, but in his case ist was part of the GOOD luck.

Today is Mike's 66th birthday. He is with us and doing well. A miracle all around. He is sober, Hep C free, Cancer free and a very lucky dude.

Hoping others have happy endings. But remember, only MIKE could make MIKE quite drinking (BTW he says quitting drugs and booze was way easier than quitting smoking cigarettes!) If it had been up to me, he would have at least cut down 35 years ago.

Hugs,

Mama Lama
Posted 11/11/2015 5:00 PM (GMT 0)
I second the quitting smoking was wayyyyy harder than liquor and drugs.

Ziff
Posted 11/11/2015 7:01 PM (GMT 0)
Thank you so much Mama Lama and Ziff! Such great personal journeys that are working out for a better life. I tell you, my sister brought herself back from the brink for a second chance 4 yrs ago. She DID want to live. But for some reason our contact has diminished and we know nothing about her now. I am waiting to hear from her friend - who saved her life 4 yrs ago, to let me know how she thinks my sister is doing these days. They are supposed to meet up this afternoon. I am on pins and needles. The one thing I wanted her friend to convey to my sister is that she is not alone and that her friend is still there for her - no matter what. I couldn't include me in that scenario, because then my sister would know that I was talking behind her back. It's terrible not really knowing and we are only left to speculate on her mood swings whenever we talk to her - which is not too often. She's missing out on so much and missing all family occasions - but it doesn't seem to bother her. She doesn't seem to want to join us and uses excuse after excuse. So what are we to think? My mother is so broken-hearted. It makes me upset that my sister doesn't understand this. I can't help but think she is selfish sometimes, but that is why I need to know more. I DO try to understand her. But it's so difficult. I would never tell her my true feelings - we have walked on eggshells our whole adult life with her. I don't want to lose contact again. It's a worry for me and unfortunately Mom too. We try not to make it the elephant in the room. We have enough of those elephants in the room now with my mother's health problems!! Lol. I will keep you all posted. I hope to hear something soon.

Post Edited (Sisterhood) : 11/11/2015 1:00:00 PM (GMT-7)

Posted 11/11/2015 11:17 PM (GMT 0)
Up-date on today's meeting with my sister and her friend: Her friend was brief. She said that my sister seems to be in good spirits. She said that she wore a long-sleeved sweatshirt with a big pocket in front and it was difficult to tell if she was bloated in the abdomen. She had sun glasses on and had her dog with her. Her friend had her two grand kids with her, so she couldn't stay too long, but they agreed to meet again soon - without the grand kids. I feel she is not telling me something, but maybe that's why she wants to see her again soon. I was happy to hear my sister was in good spirits. That says a lot for now. At least they were able to meet and my sister kept her arrangement to meet. Her friend said that she will tell my sister that she is there for her if she needs anything - and will tell her the next time they see each other. So, for now, I am going to let it go and see what happens the next time they meet. At least I don't feel she is down and out for now. Thank you for reaching out. And thank you for your stories. They bring much hope.
Posted 11/12/2015 12:00 AM (GMT 0)
Hey Sister, Sounds like a good friend you and her have. Not many people would take a part of real (opposed to virtual) time with other folks now days. Families often suffer more than the person with the actual disease. I remember as a young father looking at my baby daughter with something as trivial as a cold. Wishing I could take the pain away, make it better or at a minimum wishing she could tell me what's wrong. I always go back to that feeling when things like this happen here. You'd be surprised how often distance and family dynamics are posted within this forum. I personally wonder at times if it's not for the best. On the surface that statement may be hard to accept or sound cruel. More often than not the pain families suffer are far worse watching up close what this disease can do.

Be thankful she has that friend. Be thankful of the somewhat positive news you got. Above all be thankful you have a loving caring family to share the burden with. Forging on being strong is not for everyone. One friend gave me hope initially. My family supported me and help me and the wife. Sixty eight year old's (Mom and Dad) driving to and fro 6 hours one way to literally wipe my rear as they did when I was a baby. People I know here waded miraculously through this disease completely alone. That's what I call strength. My admiration for those folks are boundless. Be thankful my friend..... Be thankful.

Ziff
Posted 1/21/2016 2:30 AM (GMT 0)
I wanted to up-date with some information. It is now the new year, and it has been 5 yrs. this month since my sister almost died of ESLD due to alcoholism. Her liver is decompensated, but she has managed to make it through these 5 yrs. somehow. I don't really know if she has had any problems along the way as we still only talk a few times a month and she has never admitted to anything. (I found out through her friend back when she was hospitalized.) I spoke to my sister yesterday, and she told me that she has some insane itching going on at night. She can't sleep and it has been going on for a while now. She said she went to the doctor about it and they concluded that she is allergic to chocolate. I don't believe this, and I fear that it is part of her liver problem. I can't call her on this, as she would just stop talking to me, so I have to agree with her and not challenge her. I am just beside myself, as back in November of last year, I had a feeling that she was just not well. Now, I am wondering what is going on with her with this itching. She had some kidney problems recently too and I know she is on some new medications, but I don't know the details. I only get fed very limited information. I can't get her off my mind and now I'm thinking that she may be getting closer to needing a transplant. I would be there for her if this was the case. Could this be a possibility soon?
Posted 1/21/2016 3:22 AM (GMT 0)
SH...evidently your sister is interested in having a long distance relationship as she deals with her health problems. I am hoping she has maintained her sobriety...and think she has to have lived these years.

Both symptoms you mention can have many causes, but with liver disease both are often seen.

Itching was one of my partner'S symptoms for YEARS before his transplant. His liver specialist prescribed cholestyramine and it worked. It is a powder that mixed with water is like tang. y\You can't really advise your sis...but her doc knows this problem with bile salts responds to the powder mix. IF, she went to a doctor.

Odd sleeping is seen in many liver disease patients. Many take meds to help them sleep. They often switch night and day, Sleep all day and lurk about all night.

I'm so sorry miles and worries and many years keep you apart. But I bet the pleasant phone calls are much appreciated.

Hugs,
MamaLama
Posted 1/21/2016 7:56 PM (GMT 0)
TY MamaLama for your response. I am working my nerve up to ask her how she is doing. Today she texted me and said her itchiness is still there and she is treating with an anti-itch cream. Not sure if it's prescribed or not. She says she has acne-like hives on her. Is this part of the skin condition that presents with liver disease? This is so hard - not being able to ask her out-right. Life was difficult with her when she was drinking, and now - even though I don't think she is still drinking, it's still difficult when I can't even ask her how she's REALLY doing. I can see why family members blame themselves when the family member with the disease continues to practice avoidance. I will always think that I could have done more to help her if something should happen. But I have been stopped before when she was actively drinking.

I had a little dog years ago who had liver disease. When the dog got to the itchy part of the disease, she went downhill fast. Her liver numbers plummeted with every vet visit, and I had to put her down. So this is why I am so alarmed now with my sister. It is the same with people as it is with animals. For me, this is not a good sign.
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