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    Old 12-08-2007, 04:18 AM   #1
    steph666
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    worried about my sister (cirrhosis)

    My sister was hospitilized in october, when I took her to the ER because she wanted to stop drinking and couldn't..was shaking, not eating, and needed medical help to withdraw. Well, she was diagnosed with having cirrhosis, ascites, and she has the spider sore things on her face. She is sober over a month, and is home now but is having a fever daily. She is seeing her doctor about it, and was on antibiotics that didn't help. I never really got to speak to the doctor myself about her condition, and she says that they said she just has the start of cirrhosis, and that its only in part of her liver. since she left the hospital her feet are swelling up now too, and this fever started a few weeks ago. They are going to be doing more tests. It just seems to me that her liver disease is more advanced then what she is saying, and I am not sure how clear headed she was in the hospital when the doctors told her about her liver condition. She is staying sober though, but I am worried sick about the fever...is this a normal complication of cirrhosis to run a fever daily? Has anyone experienced this as a complication of the disease? Also, isn't the beginning of cirrhosis not having any symptoms. Her ascites was not a lot, and she didn't have to have it drained or anything...but now her feet are swelling..and I am worried that she is getting worse. Any feedback would be appreciated, I am just so worried about her.

     
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    Old 12-08-2007, 07:53 AM   #2
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    Re: worried about my sister (cirrhosis)

    honestly?if she actually has the spider nevis on her face(is this a red dot with tiny vessels stemming out from it)she is suffering some level of portal vein obstruction.this happens when the scarring starts to close off the portal vein and the blood starts to back up into other organs and into the very fragile veinous vessels within the stomach and throat.they can break very easily only becasue the veins normally only carry low pressure blood,but are now carrying the equvalent of higher pressure arterial blood flow.what has she actually told you about her condition so far?if she is actually having fevers,she really needs to be re evaluated to find out why.one thing you have to remeber with liver disease is that someone who has it can possibly also have a higher than normal ammonia level too.this can really really cloud their judgement,which is why she really needs to have someone who can really watch things for her and be an advocate for her.when was the last time she saw a doc about this?in your and her current situation,i would highly suggest to her that she obtain all of her medical records from the hosp and the docs who have been treating her.she may not actually remeber alot of what she was told(espescially if she was also going thru alcohol WDS).if she obtains all of this documentation,she can hopefully let you read it so you will be aware of what she really is dealing with.someone really does need to be on top of her condition besides her,you know what i mean?she may not even really realize the overall severity of her true condition.stepping up for your sister would really help her in the best possible way.she also needs to be told how wonderful her not drinking has been.that is a HUGE thing for her,trust me.any alcoholic who can actually stop drinking like she did really does need alot of praise and encouragement so she doesn't backslide.it can happen even to those alcoholics who have had very long legnths of sobriety under their belt.it has always been something they use to cope with life and numb them from it.this could get ugly at some point if she feels too alone and not supported right now,you know what i mean?she really is doing an amazing thing right now.as you can probably tell,i have alot of experience with alcoholics.i grew up with both a dad and a sister who were very into alcohol.my sister has over 25 years of sobriety now but unfortunetly my father passed away this past year from natural causes.

    she just really does need you to help her thru this ordeal.i would really tho,obtain her medical records and hopefully she will share them with you too.you just,and she too,need to know just where she is at in all this medically.i do wish you luck here and hope things wont progress for her.stopping drinking is the key here since in some cases,the liver will repair itself somewhat,but only if certain things within the liver have not been damaged to a certain extent.please let me know how things are going,K?hang in there hon,Marcia

     
    Old 12-08-2007, 09:05 AM   #3
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    Re: worried about my sister (cirrhosis)

    Thank you Marcia,
    Have spoken to my other sister, and she is going to accompany my sister when she goes back on monday for her doc. appt. I have classes, and can't make it. We have offered, but are now going to insist on going with her. Her boyfriend is still actively drinking everyday, and she has done a wonderful thing in staying sober!! I am proud of her, and my other sister who quit drinking is also very supportive and proud of her. We are worried because she lives with two drinkers, and isn't getting much support there. Thank you for the information and kind words. Hopefully we get some more information on Monday.

    steph

     
    Old 12-09-2007, 07:42 AM   #4
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    Re: worried about my sister (cirrhosis)

    as you already know,her current living situation is a huge threat to her current sobriety.the likelyhood of relapse is already pretty high at where she currently is here with days not drinking,but being in a place where active drinking is going on,well it could very very easily end up with her back on the bottle again with one really bad day.its just too availiable for her there ya know?is there ANY way she could move somewhere else?this just is not a good situation for her to be in right now.its just too damn easy to make that one slip ans then its all "on" again.it doesn't take much,believe me.

    i am so glad to see she has a suportive family behind her,you really have no clue how really crucial,and i mean crucial it is to for her to just know that she has that level of support.it just is so very much needed for her becasue of the alcohol situation and what she is going thru medically.my support system has been something that has gotten me thru some really ugly medical nightmares with me and my son.it is really great that she is letting your sister go with her.now at least she will have someone to advocate for her and you will all be kept in the loop.this is just what you really need right now and so does she.please let me know what you find out,K? marcia
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    Old 12-09-2007, 09:42 AM   #5
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    Re: worried about my sister (cirrhosis)

    Marcia,
    I know, you are right about the chance of relapse..and my sister and I have discussed trying to get her to stay with my sister for a while at least until she is physically better anyway. We went to help her put her christmas tree up yesterday, and she is still running fever and not feeling well. She doesn't seem to get that its not right to be around people drinking, and she just figures that she can't drink anymore and thats all. This is the longest period of sobriety she has ever had, and I took her to 3 AA meetings but she says she doesn't think she is an "AA kind of person". I told her she needs some sober support and friendships, but she is afraid she will have to speak in front of people like they do at AA..and she is shy. I tried to explain to her that AA doesn't require you to speak if you really don't want to. She never called the out patient clinic for outpatient rehab because she said it said crisis on the card and she isn't in a crisis. I tried to explain that its outpatient counseling for people who don't have insurance, but she thinks she doesn't need any kind of counseling or anything. Very frustrating to see her getting no help, or feeling like she doesn't need any help. I don't think she understands that alcoholism doesn't just go away, and that at some point she may be tempted to drink again. Thank you for speaking with me, and I think my other sister and I really will push for her to move in with her so that she can be taken care of and watched over, because her boyfriend and my brother (thats who she lives with)..are still at the bar everday after work and she is spending lots of time alone and not eating properly. They are even calling her from the bar and offering to bring her home bar food!..its just awful, she needs to get healthy nutrition and low salt meals, not bar food! Uhhgg..I am getting so angry about her situation and if it wasn't right before the holidays..I think I would tell them off and lose it. I don't want my sister to get mad at me though, and she is very defensive of them. The last thing I want to do is make her upset or angry at me, and so for now I am keeping my mouth shut. Hopefully tomorrow they may put her in the hospital, because they mentioned it at her last appointment, that she may need to go in. I would feel relief that at least she was being properly looked after and cared for, and they could find out what is causing the fever. Sorry this is sooo long, but I am consumed with worry at this point. Thank you for being a friend, I appreciate it. I know you have been through a lot as well with your family, and I am so sorry about the loss of your father. I will let you know how the doctors goes tomorrow.
    thank you, steph

     
    Old 12-11-2007, 07:18 AM   #6
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    Re: worried about my sister (cirrhosis)

    hey,no problem.people help me out when i have problems too so i just pay it forward ya know?did she get into the hospital yet?i am hoping she did just for alot of the reasons you mentioned if nothing else.they really do need to pinpoint the reason for the fever so they can treat it appropriately.i do have to agree with you at least for now about not pushing too hard about certain things.she is just not in a good place right now so the more stability she feels the better for her ya know?choose your battles and save things for when the situation really warrants it.i do hope she and you and your other sister are all doing okay.please give me an update when you can.good luck steph,Marcia

     
    Old 12-11-2007, 05:27 PM   #7
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    Re: worried about my sister (cirrhosis)

    Hi,
    My sister's appointment was a little concerning. The doctor wants to do an ultra sound and mentioned that she wants to rule out ovarian cancer, and also that her heart is enlarged(from the x-ray tests she got) and needs an echocardiogram and blood cultures. Her medical assistance has not come through yet, but the doctor was able to get her in for the ultra sound tomorrow anyway. I spent the day trying to reach the case worker and try and put a rush on getting her medical assistance through so she can get all these tests done and covered. I spent the day with her today, and she is scared and worried ..but all and all staying in incredibly good spirits for her situation. My other sister said that the doctor is obviously concerned, and still has not recieved the tests from the hospital that were done in october. Her diagnosis written on the ultra sound form is cirrhosis, its just that this doctor doesn't have all the information from the hospital yet to tell us the extent of damage to her liver. She had an MRI and ultra sound done last month.
    My heart just sank when I heard that she mentioned cancer, and I hope it gets ruled out tomorrow on the ultra sound. I know that her immune system is compromised already and the thought of her facing that is just devastating. I am praying to God that this is some other kind of infection and nothing that serious. I guess she will just keep getting tests done until they figure out what is causing the fever, they do know from the blood work that her white count is high and she does have some kind of infection..its just a matter of finding out where and what. I wish that she had been put in the hospital so that she could have all these tests done quickly and they could treat whatever it is right now, but it seems as though for now that she will remain at home. Just wanted to let you know how it went, and for now we are still sitting on pins and needles till we figure it out. thanks again.

     
    Old 12-12-2007, 07:18 AM   #8
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    Re: worried about my sister (cirrhosis)

    what makes them think she actually has any form of actual cancer?if you want the test results or any other real info from any place she has been seen,i would highly suggest that she just do this herself.all it takes a that phone call to get this rolling.she should be gathering all her records here anyways and keeping them all in some sort of expanding type folder?i do this with me and my son too.keeps all the important stuff in one spot.really great incase of an emergency?just grab the folder and go and the ER docs have every single test result and the best possible impression of her overall condition right there.it works fantastically believe me.saves time and the docs just have a baseline to work from and can tell by comparing the last labs she had with the new stuff.this IS very important espescially with her type of condition where labs mean ALOT.but the best thing is like in the situation with seeing that doc and not having all the info that he needed?i have had this happen over and over.but having all your own stuff on hand,all you have to do is reach into your folder of info and let them make a copy of it.never ever give out your own records.this would have helped with that appt,alot.you see what i mean?just get her moving on the records,she does need them.just doing this one thing has come in SOOO handy so many times for alot of reasons.

    her heart enlargement could be due to possible portal hypertension?this also would be going on within her liver and probably the spleen as well.its from backing up of the blood that either cannot flow or is slowed thru that P vein.those US results from before and the new ones will tell whether this is going on as it does check(with the doppler?) just how well or how much real blood flow is actually getting thru the portal vein.so it is a really great test for liver problems.alot of solid info.they will also check blood flow thru her kidneys too just to make sure those are okay.sorry i gotta fly here but please keep me posted.sounds like she is holding up well and thats great.take care steph,Marcia

     
    Old 12-12-2007, 10:18 AM   #9
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    Re: worried about my sister (cirrhosis)

    Hi marcia,
    There was a mix up at the hospital, and her name was mispelled..by one letter. We finally did get the results to the doctor, but your right..she should get copies for her own file in case of an ER visit. I will get copies for her own records, thank you for suggesting that..as we were most concerned about the doc getting them..but we should also create a file.

    Her ultra sound is tonight, and I have no idea why the doc even mentioned that cancer as it has my sister a mess. Hopefully will have better news after the ultra sound results.

    steph

     
    Old 12-24-2007, 06:54 AM   #10
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    Re: worried about my sister (cirrhosis)

    just wondering how things are going with you and your sister steph?please post an update when you can,K?hope you all have a great christmas despite everything going on.there are always things to be really thankful for.no matter how really bad things are,they could always be much worse.believe me.and that IS something.i keep telling myself that all the time.it helps me to really appreciate what i DO have not what i don't.take care hon,marcia
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