HealingWell
Search Close Search
☰

Caregiver Confusion

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/23/2012 4:34 PM (GMT 0)

I posted on here one other time at the end of last year.  I had just found out my sister was really ill from drinking and how bad it was.  I've become more educated since then and understand more about ESLD but I am still confused about a few things.

Since my last post my sister moved to TX with her hubby and then finally asked from my help in April she was here the entire month and sober the whole time.  Oh she was hospitalized in TX for about 5 days to drain the ascite and here her blood levels in normal limits. She was eating healthy and looked like she may have put on a couple pounds while she was here. (maybe 5-10) I had just gotten her into a dr here and went with her on that one visit.  The only thing the dr says that he is not seeing in her is confusion.  In Nov she had bad confusion while I was with her. ( She detoxed, was taking diarectics, vomiting, and not taking any fluids since she couldn't keep them down)  I wonder if she may have been severely dehydrated which may have caused confusion at that point. To be honest I have not seen it since.  Anyways she thought she was better after being sober 30 days and went back home to start drinking again.  Once again she called me after being home about 3 weeks and asked to come back to my home. 

I live in the country the nearest gas station is about 5 miles away and she has no car here and I have her wallet and credit cards.  I do not know what I should be doing for her care and to try getting her possibly on a transplant list.  She thinks that her doctors do not know that she is drinking because she has sobered up for a about a week each time before going to the doctor or hospital and tells them she stopped about 3 years ago.  I am planning on taking her to AA meetings starting next week now that she is detoxed again about 2 weeks now.  I am going to make another apt with liver dr.  I am thinking about taking her to a therapist also.  If she were in a rehab (which she won't do since they will know she's been drinking) what else would they be doing for her that I can try getting her to so that she might stay sober.  I know she want's to beat this or she wouldn't of asked to come to my house and go into lock up as she calls it.  She has a Meld score of 19 right now or at least in May she did.  Her dr she saw here recommend that we try getting her on a transplant list.  ( I am a strong Christain and want to make sure that she has beat the drinking and not taking a liver someone else would not abuse)  I also know that if it is God's will she will beat this.  Right now she says she is saved but on the other hand doesn't serve him. I am working on these.

Anyways she has been getting sick the last few days.  It seems to come and go.  She may feel well in the morning and then have a headache and vomiting then feel well agian.  Is this from the liver or maybe she is becoming unable to eat certain things or maybe a bug?  Anyone else have anything like this? 

Has anyone else had anyone this far into esld be able to sober up, get clean, and live long enough to get on a transplant list and get a transplant?  

Posted 6/23/2012 5:00 PM (GMT 0)
Hi, Worried. Good to see you again. There are some who sober up and get a transplant. Also others who sober up and become so much better that they don't need a transplant.

What you need to know is that she will not be considered for a transplant until she has 6 months of DOCUMENTED sobriety in AA or a counseling program. Would she have a transplant in TX? If so, she would need to find out what a center there would require. However, she should focus on remaining sober at this point. As her history has shown, she is not going to be able to do it without the support of a program. She will be sober with you, but then head straight to the bottle when she is back home in TX.

As to what you can do: Keep her on a no sodium or low sodium diet with no red meat (hard for the liver to process.) Liver patients do vomit when the disease has progressed. Is she taking any meds? It doesn't appear that she needs Lactulose. Is she on diuretics?

She is likely still detoxing from the booze. It takes a long time for it to completely clear the system. Try giving her ice cream or other sweets. This diminishes the desire for alcohol. (There's a lot of sugar in alcohol.)

I can't think of anything more right now. You might let her know that you will not "rescue" her again. If she doesn't get and stay sober this time, then you are done. Personally, I think she is there to get sober until she starts to feel better, and then she is out of there and home to drink.
Posted 6/23/2012 6:06 PM (GMT 0)
Thanks for the response Hep93,

I didn't know about the red meat so I will watch that. No she is not on Lactulose.  Yes she is on diuretics and something that starts with a P (long word) she was out of it and just started back on it.  She is on a low sodium and low fluid intake also and a multi vitamin.  She's been eating a lot of tomatoes and I wonder if the acid might be bothering her?

Yes the treatment program is important and I want to find her a really good one.  I do not know where to look or how to know which one might be better than another.  She has agreed to stay 90 days this time since the 30 days doesn't work.  I am hoping to keep her the 6 months that she needs to get on a list and I feel that would give her enough time to have treatment helping her.  At that point it will be up to her to stay sober and want this.  She knows I will not lie to her Drs. Anyone knowing a good outpatient treatment in Gulfport please let me know.

As far as transplant that would be either TX, or New Orleans.  She is on the state line and I am within a couple hours of New Orleans and could drive there as her support person. 

Posted 6/23/2012 6:58 PM (GMT 0)
Worried,

Hi, welcome back.

You have your hands full.

I don't know where in TX she would be going to, but in NO, we have had a member get a transplant a place they liked, at Tulane I think.  Maybe she will post  in.

I found this on the Internet: http://liversociety.org/html/liver_transplant_hosptials.html

Maybe that will help.

My partner had to get sober before he could get listed. Many places won't even do the work up until you are 6 months sober. Mike went to AA 4-6 times a week...you go as often as you used to drink, or that is what is recommended.  He had an ethanol blood draw once a week.  He coudln't even use mouthwash or cough meds with alcohol in them.  They swabbed his arm with betedine not alcohol before the blood draw to keep the test pure.  You have to get a sponsor to sign a calendar or diary page that you attended each time.  We kept the lab results to provide documentation also.

When they do the workup for transplant, you have to see a psychiatrist one or more times to discuss your sobriety and other things. The psychiatrist has to write a letter that you are a good canidate for transplant, that it is unlikely you will relapse, that you are committed and emotionally stable enough for the rigors of transplantation and the rigorous post transplant protocol...meds, labs, appointments, etc.

If you don't pass the psych eval, you don't ge on the list.

The problem with your scenario is that it seems like you are willing to do all the work.  She arrives on your doorstep, or you bring her, and then you are responsible for her sobriety.  You are in a tough spot...being firm and not buying her booze is perfect, but all this energy to find her a program and keep her away from TX means that you want this more than she does.

Mike's doc told him firmly, when his MELD was about 24, that he would die in 3 months if he continued to drink!  Not drink a lot or drink every day...he meant AT ALL.

This sister of yours needs to know that when you liver is shot, you die.  If she continues to destroy her liver, she will die too.  Alcohol destroys your liver.  She has a choice to make. SHE has a choice to make.

Dying of liver disease is not pleasant. She is feeling the effects right now!

You are a good sister. I hope she makes a good choice.

You might want to take in some  Al Anon meetings for yourself.  This is not your battle. This is her battle.  They will help you separate those two.

Good luck,

Carol

Posted 6/23/2012 8:00 PM (GMT 0)
Just some clarification: If she goes to AA (which I highly recommend), it is the chairperson who should sign the calendar of attendance, not the sponsor. She won't have a sponsor right away and when she gets one, she would not be at every meeting. I truly don't see the point of getting her into an expensive treatment program at this point. As Carol said, you seem to be the one who wants sobriety for her and are doing all the work. AA is free, though they do pass a basket towards the end of the meeting--no obligation to put anything in it, but $1 is the norm. This helps them to pay the light bill, etc.

Also, as stated earlier, you need to find out which transplant center she would go to and then contact them to find out what program they would require. Most say AA. So don't get overenthusiastic and sign her up for an inpatient treatment program, when it may not be acceptable to the center she would go to.

Are you giving your sister her meds? Perhaps you should, to get into practice post-transplant. You should know everything she takes and what it is for. So look on the bottle for the P med and come back and let us know what it is. This is a challenge post-transplant, as there are so many new meds and they change, or the dosages change, frequently.

There are lots of labs and appts. post transplant, so you might need to stay near the hospital for awhile.

Tomatoes contain a lot of sodium, so cut back on those. Also, she should not be taking a multivitamin with iron. Look for one without the iron.

P.S. Is the med Prednisone?

Hugs,
Connie
Posted 6/25/2012 6:26 AM (GMT 0)
Thanks for the info Carol and Connie. Right now you two are my life lines on this and I mean it. It was a rough day here today. First I had told my husband about the red meat. He does a lot of the cooking or me and my foster children would starve. He made taco's today but informed my sister that he would be making meals w/o the red meat from now on and she wanted to know why. He told her that she wasn't suppose to be eating it and she agrued that she was. She said she was suppose to be eating protein. I tired explaining that yes she needed protein but the red meat was harder on her body now. Well her Dr. never said anything!

I also told her we need to make an apt with the liver dr here but she just wants to make an appointment with New Orleans at the transplant center. She thinks since she has told the dr that she stopped drinking 3 years ago that they aren't going to check into her drinking. Part of me instead of arguing with her over this says just take her and let her see for herself exactly what they do check, but then part of me worries it may hurt her chance on down the road. However she is running out of time and maybe if she only has one more chance it might light a fire under her.

She plans on going to AA on Tues with me but told me that no one knows you are there though. She said that you don't sign in and it's called AA for a reason. "Anonymous means you don't tell who you are".

She's not been that bad till today and she's not really mean you just can't talk any sense into her. She is a very smart person but her common sense is gone!

The med that I thought started with a p actually starts with SP spironolact. I googled it and looks like another diurectic? Her multi vitamin does have iron in it. That should be a fun thing for tomorrow. BTW why don't we want the iron? Is it hard to beak down?
Thanks!
Posted 6/25/2012 8:12 AM (GMT 0)
Last question first: No iron supplements because the diseased liver cannot process it well, so there can be iron overload (hemochromatosis.)

You were right in your answer to her about protein. She can eat chicken, turkey, fish, soy products, beans, but no red meat. Many with liver disease get nauseated by red meat or just feel ill and throw up. For things like tacos, cooked ground turkey can be used. I make turkey burgers. Since turkey meat is rather bland, it needs to be seasoned well. I mix in a tablespoon of A1 sauce, which gives it a beefy taste.

Your sister is correct that one does not "sign in" at AA. However, she would take a simple calendar or form with her and present it to the chairperson at the end of the meeting. Most likely, she will not be the only one doing this. Those who are court-ordered due to DUIs also have to have a form signed. You can make up something on the computer stating her name at the top and then (going across the page) Date, Meeting location, Type of Meeting, Chairman (this is where it would be signed.) AA has a number of different types of meetings: open Discussion, Closed Discussion, Speaker Meeting, 12-Step Meeting, etc.

During transplant evaluation, she will have numerous blood tests. Also after or before doctor visits. So it's laughable for her to think that saying she quit drinking 3 yrs. ago is going to prevent her from having any more blood work. She will also be tested during the waiting time for transplant and after transplant. Believe me, they will definitely know if she is drinking or using drugs of any kind. They often schedule last-minute labs that you're not expecting. She cannot beat the system. So it doesn't matter if she shows alcohol or not in her system at the first hep doc visit--it would be discovered at some point, anyway. How long has she actually been sober now? If for a week or more, her blood work would be clear. However, there will be many, many labs taken down the road, so she need not think she has them fooled. If she subsequently drinks at all, they will find out.

Spironolactone is the generic of Aldactone and is often given in conjunction with another diuretic, Lasix (furosemide), though it is sometimes prescribed by itself.

Hope this helps.

Hugs,
Connie
Posted 6/25/2012 12:45 PM (GMT 0)
Worried,

Just to add onto Connie's post.

The blood tests are very comprehensive...the first time at the translplant center they took 23 vials of blood and several of them were for the HUGE tox screen they do.

Then Mike had the once a week ethanol tests.  You can't hide from that one!  Even mouthwash with alcohol shows up and turns the test positive!

They don't make the 6 month rule to be mean to anyone, they have found in the research that those who are sober live longer with the new liver, and there is a low % of drinking after.  You would think all those alcoholics who need new livers would just drink and ruin the new one...not so. They use the long documented sobriety and psychiatrists report to figure out who is serious and who is not!!!!!  These docs are not idiots. 

Mike was at death's door when he first went to the hepatologiest at Jackson in Miami,  and was sober a month and they didn't care...he might die, but he had to be 6 months sober before the transplant and get documentation from the AA chairperson every time.  And they do it at the end of the meeting because they want them to stay...not at the beginning... and the person comes for 5 minutes, gets the signature and takes off.

Mike could not drive he was so crazy with the Hepatic Encephalopathy, so I took him 4+ times a week and did my grocery shopping, post office, pharmacy errands. It was a pain as the meeting he liked (met every day in the daytime when he was feeling better) was 30 minutes from our house so it made no sense to go home!!!! 

He didn't like the meetings at first.  But he liked some of the men and they liked him and he was their POSTER BOY in a way...look at Mike (hi Mike), he is the reason you should't drink.  If you continue to drink, you will DIE. ALL the guys wanted him to live. They helped him out of the car, helped him toddle to the chair near the door he favored, talked nice to him even when he wasn't making any sense. And after a time, he got a little better with the meds and began to particpate.  He treid to help put away the chairs and they let him do one or two.  He thought at first he wasn't like them, etc etc. But after a time he came to learn he was exactly like them. When he got his transplant, the guys took the photo we sent everyone from the hospital with Mike pink and smiling and put it on a tee shirt and eveyone signed it (just first names) and his sponsor brought it to him at home.

I hope she gets the help she needs.

Hugs,

Carol

Posted 6/25/2012 12:48 PM (GMT 0)
Oh, I forgot...too much iron can cause bleeding varices...it builds up in the liver like other chemicals when the liver isn't working. Remember the liver has over 600 jobs in our body. when it isn't doing those jobs well, all kinds of chemical changes happen that should not be happening or don't happen when they should be happening...like the ammonia not going out in the urine, just hanging around the in blood causing hepatic encephalopathy...etc etc.

Carol

Posted 6/28/2012 10:59 AM (GMT 0)
You can purchase multi-vitamins for women over 50 or post menopausal. It still has all the vitamins & minerals in it but either low or no iron. Hope this helps.
Posted 6/28/2012 8:20 PM (GMT 0)
I just get the Walgreen's brand of MV w/o iron. It's inexpensive and does the job.

Hugs,
Connie
✚ New Topic ✚ Reply