Hi Dr.Kevin, I'm so happy to have found your site and read with interest at the details of liver disease,via questions-answers.
I'm a 57yr old
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Female sexual dysfunction with cirrhosis/ascites, diagnosed 2yrs ago,ascites onset.2 biopsies postponed due to excess fluid,had paracentisis w/fluid drainage excessive f/5days. A CT w/contrast showed nodules, slight kidney calcif.'s in Dec'02,mildly shrunken liver. This was 1yr(sober) from ct#1 w/enlarged liver as expected.Meds,lo
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Sodium chloride, injectable
Sodium citrate-citric acid
Sodium fluoride pr day(500mg)weight loss, 90lbs,weigh 162,5'6" My doc says I'm one of his best patients, foll his directions,absolutely, now am on 1,000mg sod. a day, (what a treat!)relearned how to cook,just terrific! I attend AA,have a wonderful sponsor,abstinent since diagnosis(7/01)sooo sick then,hi bl press,really hi,now 110-70 pretty consistently.
I look great feel great,few side effects, have so many questions,my doc is wonderful,
gentleGentle laxative,caring,but as I understand,hesitant to predict much,just that 'I'm not sick',be happy, celebrate life, which I certainly do, with gusto and gratitude. I have some side problems, manageable,am on 2aldact-50mg,2furos.40mg pr day,AST25,ALT28,Sod 128,only hi#'s are
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Warts'34,creat.1.3,due to meds,Dr says.Am at Doc/labs monthly, carefully,but am interested in helping myself in all ways,read net a lot,but see the prognosis/outcome f/ascites so low,for hi percentage(50%in 2yrs,79%3rd),it's so scary.Do labs fall suddenly to result in mortality of 2yrs-3yrs? Or slowly?
Do Any/some w/my advanced(70%pr Doc/apprx cirrhosis)condition live well beyond or am I being a pollyanna? There isn't a hepatologst w/in 175miles but feel I might go,if warranted? Second opinion.My ins.company wouldn't renew(foll'g cobra)due to this,I'm uninsurable,but maybe for state ins.at $750mo.a tough situation, so am not a candidate f/liver transplant at all, due to this? Any ideas on any '
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stemStem cell research the progression,I would do.Doc sooo busy,I ask but he isnt the type to get detailed.I'd feel better w/truth,have a disabled son,a dear fella,(Rubella)so unsure of his future w/out me,or am I way ahead w/good labs,management Child P score 5-6,little enceph and meds/ascites ok. Will meds stop working and all this change,death is forecast for me now,at every turn,(even by my doc at the outset when I pressed),it's a thorn among roses in my life, can't stop the worry, unless some do go on,beyond this.? Odds available?
My sis is an RN (ret'd)she's worried,loving support from her, my husband,other sisters,2 other recovering.Our parents died young,Dad,cirrhosis,Mom in childbirth, early 30's,found out soo late about 'factors',so heredity isn't good here either.(bro died,suicide@41yrs had cirrhosis).I'm wanting to do something to plan,try,improve,get help f/future inevitability
but not sure how, where or with whom.Indianapolis closest w/any specialists,appreciate your input Dr.thanks so much for being there,(you can bill more/so many questions!)MelanieLu :)
Not sure you understand the complication of ascites, as I've come to learn, is a complication of cirrhosis, showing far gone progression of cirrhosis, w/edema, massive in the area above the stomach, almost like a pregnant woman, 10-12liters of fluid in there, weight gain first, then the body shape changing, plus hi bl press, broken veins, (spider angiomata on chest, another telltale sign of big damage), red palms, puffy appearance, plus all the other lovely affects of smoking, drinking, problems, in all areas, hating myself, giving up hope, poor me, pour me a drink.
If there's a number of drinks which cause problems, I don't know what it could be, my Dad died w/it at 35yrs old, brother had it at 38yrs old, I suppose I started cirrhosis at age 50-52, give or take, but ascites started and I couldn't get rid of that fluid..horrid, ballooned from about 185lbs to 245lbs. in six months or so, no starving helped, nothing, the fluids were staying in my body, which is wht I take meds for now. Many w/ the 'cirrhosis' w/out ascites take no meds, far as I have heard, so nutrition is everything, normal labs are a constant as I've heard too..I had them for years, now that I have had horrid labs that improved, we/Doc and I can measure.
Hope that helps? I've been in treatment w/women who say they had two to three drinks a day is all, and are sick as dogs, I find this in my experience..most exaggerate to a minimum what they actually consumed, some combined w/other drugs, some w/a hereditary pre disposition, some drinking w/food, (still counts tho they'd think it doesn't) aspirin, weight gain, all factors plus being female, smaller body parts, more damage, same drink.
Best to you to then dixie, MelanieLu
Symptoms, other than sick days,bad behavior,feeling run down, no sparkle in my eyes, no energy in my body to go an extra step to do more, look better or care about it,not always, sometimes.
I mentioned spider veins,red palms,HBP which was controlled by meds,but wouldn't have been there w/out the drinking,lifestyle which created 'emotional turmoil' inside ME,about so much. I was 'most attractive' in high school, believe me I wasn't most attractive in my appearance later,slowly,the pictures I look at later of me, thru the years remind me, show me, can't be denied. We each see telltale signs in our eyes,skin,arrythmia once in awhile(at rest),sore all over,not always, but sometimes,nails not healthy, splitting,breaking, etc.more than before (now happening again)smoking more so the consequences of that heightened the rest of chest wheezing,the voice,(whiskey tenor), hair not as shiny,rings too tight at times,but probably how much BETTER I felt when I would stop any drinking, in short order, two-three days. Longer, stamina to work and 'go go go' would return,subtle losses and returns in sobriety. Those days of 'feeling better' used to be a couple days, those got longer apart, pretty soon it took a week to feel whole,energetic, then longer, a month, then a yr. On and on. I started seriously drinking at about 25-6 yrs of age.I've had and enjoyed two five yr sobriety's,several of 1yr, many of 2,3,4 months in the 30yrs. So, to answer what you seek,I can't think of much more because you're different from me and all the others who drink, I've known social drinkers, they never talk a word about booze, it wouldn't occur to them to even mention it or give it a second thought. I've not seen them drunk or in any way affected in their behavior while drinking, they may have 2,most have one and a little of the second,and when I've been with them, (restaurants, they don't hang in bars) THEY LEFT A GLASS HALF FULL, I've never done that. Never, not once. Not me.I didn't drink evry day, never,ever, but 'binge',often over great good fortune,plus bad news,plus timeouts,plus..weekends at first,any social occasion,a must,or I'd think about it, less fun to go if there was no booze,shouldn't and wouldn't matter toa non problem drinker.They say no when it WAS there,sometimes.I did that too, but wanted to drink to feel good, (they call it drinking to get drunk)or not drink at all, as two didn't do it and I'd rather keep going than eat,as I aged,as it progressed.
I may be missing the point Dixie,so giving you the whole pic of what you ask, I hope is what you seek. Not meant in any way to point any finger, but just give you my experience,personally and thru out a very social life,personally and professionally. I knew of two others who were onto 'my starting to get in trouble w/booze',one family member,one biz associate,over ten yrs or so. It's a hard talk,they did me a favor,tho at the time I didn't think so. Look, I can refund my misery any time I want,it's all about the cost. I'd rather focus on my health, all I can/should've done,can do now,am doing now to enjoy a very fruitful life w/friends, family,a great biz,very nice and comfortable in most ways,the physical symptoms are all I can think of Dixie,some clear,others non specific to others, but very specific to ME. Subtle in the happening.Many I know have good labs, doesn't seem to mean much.I have two pals w/cirrhosis who do. They're baffled, but its not uncommon til the very late stage, as I understand from doctors whom I've spoken w/personally. The net's filled w/info, not all reliable and I've read total opposite 'takes' on sooo many symptoms. No one can or will tell you more than I would about what happened to me, but comparison, other than flat out medical, (you saw Dr's reply on the Child Score)would be the Minnesota Multiple Test on 'how I drink', etc. Not sure that's the name exactly.
If physical symptoms are 'none' as I'm hearing you say, I've known many who cursed that fact as my Doc says to me: time you know you've got it, it's too late'.It hides,does it's damage, the tests to see it/find it, or labs to flag it, are a far down the road possibility. best to you today, it's all we have for sure! I can't think of another symptom to add,physically or emotionally, I've seen all kinds.Never surprised tho,those who did have problems avoided me sometimes,sought me out others, I have seen secret drinkers,heard every type known,every trick known to conceal,every sorrow known as I'm seeing and feeling now about where this will go,but w/out trying to 'project', which is dangerous,I try to plan,even that can get tiresome as it's alwys all about me, I'm getting tired of that too, ha ha ha, need to get out and do more for others, hoping you find all and evry answer you seek,I'm asking a couple more questions to doc soon, maybe those will answer yours.How are you very familiar w/ascites? Most don't know a thing about it,don't want to,couldn't begin to understand it, etc. Nice hearing from you,
Melanielu
Started w/2drinks,lady drinks,creamy pinklady,grasshoppers,gave that up after a yr, vomiting..told it was the 'sugar' in them.Went onto gin/7up, tasted good, again, sugar,switched to scotch/soda,tall and weak, always that way,didn't like the taste just the feeling more.Stayed w/scotch at about 1/2 a fifth two/three times a week,so about 6-8 each time,? Not sure on how many ounces that is..how many drinks isn't as important I'd guess, vs what's in them, only two or three double vodkas isn't the same as two or three glasses of wine, it's the alcoh. content,(proof it's called) so my choice of 'poison' changed.
I then went to beer, three to four x's a week,easy going down, tasted good, cool in hot summer, recall in 93-95 about 12 cans 3-4 x's, remember as the first time I drank 12 cans at one time,over 8-9hrs.I was shocked, at the progression. Increased amount, decreased benefit.My friend/counselor told me once, it's the cruel trick of booze on our bodies, it's letting us drink more, w/out bad effects, when all of a sudden, our tolerance level drops, four does what ten used to do. Then I began managing my life/work/social around drinking, counting the number and how often and what, etc. Can't imagine anyone 'counting their drinks w/out a serious question as to why', I've heard that social/normal drinkers never have gotten drunk even one time, they stop before that happens, never do get in the spot of not eating, overdoing, etc. I've heard that.
So finally, for me, wine, about 3/4gallon,mixed w/soda, for about 10hrs, give or take. Three x's a week, couldn't handle more, so am sure about that. The ascites 'symptom', I explained in letter #1>end result of the many others Dixie..hope that helps you, in the 'how much'. (My friend claimed 3drinks a couple times a week, it was a scotch triple,each one,I was there but she reduced that when she got sick, calling it a few drinks a couple times a week. Add nine oz. vs three..big difference. ha! My kinda girl! ML
(one of my fav's was: Caution! Alcohol may lead you to believe your old boyfriend really wants you to phone him at 3am.)!
(My sisters said the waitresses declared a National Holiday the day I got sober), believe that one. So mood swings were a factor which I'd think changed over OTHER FACTORS, like a bad day, good day, argument w/someone, a real or perceived slight by another, a look, a remark, an audit(aaarrrrggghhh),the cat died, on and on..so moods changing, not necessarily personality changes. Tho that took time.Conversation didnt flow as well w/out it, often my 'patience' stopped short and interest with it, somehow, that didn't happen w/a drink in my hand. (Liked some I'd never give a hoot to, til next day, called lowering standards socially), kept a supply in the house, not at any time did I not have something, and know how much, called maintaining supply.Grandiose thoughts, buy more, worry less, I can't lose, I'll do this and that, more than goal oriented, but 'dream oriented' while awake on my 'list of I'm gonna'' all centered around that I could, would, have, etc.So, recalling that the taste of food was very enhanced, at the end of the party, so I ate my way to 250lbs, plus the empty cal's of booze in there, eat, pass out, wake up, not remembering what I ate til I saw the evidence in the kitchen, thinking, MY GOD, 8 BUMS SNEAKED IN HERE LAST NITE AND HAD A FIELD DAY IN MY BEAUTIFUL, CLEAN KITCHEN,and then, oh yeah, chicken, (massacred) sometimes tho, othertimes, 'false energy', clean the whole house, spotless, pay the bills, get organized, IRON, iron everything,false energy was a good deal, far as I was concerned. didn't look like I was in one spot, not moving too fast. Drinking alone was what wound up to be, or those who came to my house, who were big drinkers, but even then, I wanted to be alone, to think, (about what, I don't remember).
Toward the end of the journey in '01, w/swelling being the sign I couldn't hide, or get rid of, the doc said at my first visit, 'your eyes look muddy', not yellow, but grey. Foot itching once in awhile, severe, but seldom, breath which felt like 'metallic', bruised very easily,hot flashes when moving too much, like out shopping, red face like out of breath, I knew what it was, got me out of a lot too. (I'm sick, you know, the BUG everyone has, going around) Missed commitments, not cold flat out missed, but begged out f/illness, other situations and I've always thought myself to be very reliable. (Next time,I'll go, got a lot of sympathy too!)
Well, more later, thanks for trusting me, YOU TOO are showing some about things to think about, whatever the reason why. We each have our 'agenda' DD and it is ours alone. (whats in it for me, WIIFM), different for all, as Dr Phil would say, 'Whatcher payoff'? Always the reply, 'gee, I dunno', and he: OH YES YOU DO, and then it is out, an innocuous reason, but we all have them.
Good for you on no smoking, wow, that's to be admired and have heard it said it was harder than getting sober, that one. Very smart of you. Your advice was so good on watching 'I + O',in effect, not sure where to get that Texas hat, any suggestions? Any other device I could manage discreetly in this hotel?
I wonder too about the fluid in fruit, watermelon, cantaloupe, how all that counts as 'fluid'. Have several servings a day of it, so that affects fluid intake.?
Having these fingernail layering problems, perhaps a vitamin shortage, Lord knows I couldn't need one more vitamin, but I thought the 'b' vitties helped nails, hair, skin, perhaps not so but you're the gal to ask! Love your good ideas and tips! Thanks again, is your curiousity what brought you to this site in Gastroenterology?, later DD, MelanieLu
I can't even remember the last time I was actually 'tipsy' from drinking too much wine or waking up feeling bad from 'too good a time' the night before. I have been very disciplined to have only a couple of glasses of wine these days - for a couple of years now. The big party years for me were in my 20's and 30's. I started attending church regularly (again - brought up in church - father was a Church of Christ preacher!!) in my late 30's. Being a Christian has definately helped me avoid some of the pitfalls of the party world. I settled down a lot in my late 30's....been married for 23 years and no kids by choice - good husband/great marriage and love for each other - and fairly quiet life.
As I said - I asked questions of you basically due to worry over past behavior and damage - but realize the less alcohol in my life the better. I truly don't drink 'a lot' ever these days - always feel good in the am - not a party girl anymore!! I still do enjoy a glass or two in the evenings but do not 'drink to excess' these days (at least I don't see it as excess).........I just want to try to take care of myself as I get older and the only real 'vice' I have these days is the wine in the evening. You have been helpful to demonstrate the problems that can come about. I have never attended AA - never felt the need to but I do have a great respect for the organization and the help it provides.
Your 'fluid' question - yes any fluids - such as soups, jello, poposicles, - all add up - so be aware - I thought the keeping up with I and O's could help you on the times you are retaining too much. I so feel for you and your situation - I have been praying for you and asking the Lord to take you in his arms and bless you with a way out - a transplant - you are one of the people that needs to stay on this earth. I can tell by your 'candor' that you are a unique individual and so 'full of life'.
As I keep saying - you have been helpful to me - and made me think and examine myself and my habits. Sometimes I wonder why God put things like drugs, alcohol on the earth - so tempting to us mortals and hard not to have any vices in this life - I almost don't trust anyone who says they have no vices - Ha!! I would like to ask them - " Is your name Jesus?" I was wondering Melanielu - are you a religious person? If not I just wanted to tell you that we are all sinners the only difference is that Christians are forgiven. It doesn't matter where you have been or what you have done in life God loves us each and every one and wants to help us.
Enough preaching - I have a strong faith and feel the need to reach out to people I care about - I do feel all things happen for a reason - especially our wonderful chats. Don't worry - I am not a in-your-face-christian. I will not badger you or harass you - but felt the need to let you know my feelings. You have a good day- post your e-mail address and we can continue our converstions in private......DD
Now, about YOU, what is GERD, Gastro something, something disease? don't know of this. Right side pain, had that and went to my gyne, it was a mass, benign, fibroid tumor, not dangerous but sort of dull ache, especially w/over activity, then I have this 'membrane' around the para sac, which I'm told is also causing pain, tho it's not pain, pain, it's dull throbbing, in the liver area. Am told the liver doesn't hurt, or have feelings like that, but the membrane and nerve endings in surrounding organs do, sympathetic? But mine is fluid too, so that's all I know DD! Tell me more about yourself, write on above email, you're a neat lady to know! Any chance you know about my nails layering and breaking off? Write anytime, I keep some pretty weird hrs, few more weeks to go in hotel, more later, send a note! MelanieLu
I didn't find as much info as I would have liked on the nail question - but what I found..........Vitamins/minerals that could help your nail brittleness - Vit. A and Calcium. Although be very careful with Vit. A - it is possible to take too much and develop toxicity although I know cirrhotic patients need some supplementation of A - ask your Doc what level is safe to take.
Hope this info helps you....more later....DD