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07/16/2011 07:53 PM

Coming out of the closet...

ImogenWinter
ImogenWinterPosts: 138
Member

Dear All,

I have been lurking on this forum for a few months now trying to gather information, and, not wanting to “come out” I have also PM'ed a few members who have been extremely kind, gentle and encouraging with their responses. In order not to continue personally burdening folks, I thought I would just throw it all out there for anyone who is willing to offer information as I am becoming obsessed with fear of this disease.

For those of you I have PM'ed, please forgive the tedium of this story being repeated. Btw I have changed my user name as my previous one is known to my friends and relatives from other uses and I would not want anyone I know to google that name and come upon this post.

I am 42 and have been a heavy drinker since 18 making a total of 24 years. Mainly wine, average between ½ - 1 whole bottle per day, occasionally a binge of 2 bottles over the course of a Sunday; almost never on an empty stomach. Other than the drinking I have a reasonably healthy lifestyle – eat well, exercise almost daily, sleep well, loads of vitamins and milk thistle.

Have perfect blood values, but of course now I know that doesn't mean much. Have never had an ultrasound. The only physical indicator of anything I've had up to now has been the very familiar ache / discomfort in the liver area, and under the right ribcage, which has come and gone for many years. The official word says this is nothing but almost every personal account I have read of alcoholics or people with liver disease from other causes talks about this phenomenon. For me, the pain goes away if I drink lightly or take a few days off drinking altogether.

For a short while I thought I may have Terry's Nails, but having compared my own nails with family members, looking at old photographs of myself, and doing extensive internet research, I have come to the conclusion that I have normal nails which are simply a rather pale variant. They are still pink, just pale.

The thing that is scaring the h*ll out of me now is that my hair is thinning – a little bit on my head, but not too bad… and very noticeably, erm… in other places. At my age this could simply be a manifestation of perimenopause, but I don't have any way of knowing for sure.

I have read many cases now of people who had cirrhosis for years and years (I mean many years!) without realizing it and then one day, seemingly out of the blue they have an esophageal bleed, or less dramatically perhaps, at some point they begin to decompensate in other ways. Some of these people have even been sober for years! How can this happen? I thought that if you remove the cause of the scarring, the cirrhosis would stop.

I live alone (with my cats who are like my kids) so if I had a bleed I would almost certainly die as there would be no one here to call an ambulance and I don't think I would be able to do it in the middle of an esophogeal bleed.

I haven't had a drink for four days now but am terrified about my future. I've read that only 15-20% of alcoholics ever develop cirrhosis, but I seem to be finding all these stories of people in their 30s, 40s and 50s becoming ill.

Any information would be greatly appreciated. Especially would like to know how many of you experienced hair loss and specifically was it an early symptom?

I am due for annual (standard) bloodwork in September so I will see how things are. Now I know what to look for – serum albumin, bilirubin, AST/ALT, platelets, sodium… anything else?

With respect, best wishes and sincere thanks,

Imogen

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07/17/2011 07:23 AM
FallenAngel7
 
Posts: 18
New Member

hello imogen, i to am on another profile, but mine was through forgetting my old details, i used to be claire?? i too went through a phase we i lost allot of hair and my nails turned white and broke off, i had mine after a long time being diagnosed with cirrhosis my hair is thickening up lovely now, i think it was due mostly to many months of malnutrition as i couldn't eat very much due to varices sickness and severe fluid build up. well done for posting here, and i would urge every "lurker" to introduce themselves, no one person is the same, so as it's very good to read up on past posts it might be missleading if your not yet diagnosed im sure you are very scared but stopping drinking can help you not getting to the cirrhosis stage.

nice to hear from you, and im sure you'll get more support shortly,

claire Smile


07/17/2011 08:22 AM
ImogenWinter
ImogenWinterPosts: 138
Member

Dear Claire - Of course I recognised you straight away Smile Have been reading some of your new posts and am THRILLED to hear how well you are doing!! Keep up the great work and please keep me updated; you are often in my thoughts.

To everyone - one more really important question I thought of: Just how common is it to have completely normal blood values with cirrhosis? I have heard that it's more common for alcoholic hepatitis or even fatty liver to throw out weird blood numbers but that cirrhosis itself often doesn't. Why is this?

And also - sorry if these questions seem like they never stop - but I noticed over the past several months it's harder to get up in the mornings... I do of course, but it's harder and I often sleep till about 11 on the weekends when before (even with hangovers) I only slept till about 8. However I don't think this is sleep reversal as I go to bed early (around 10) and sleep right through the night. Perhaps it is because I have been gradually cutting down the alcohol? I remember one friend who was a heavy drinker (much, much worse than me) who went through a phase of sleeping an unreal amount of time after she quit. She is totally fine and healthy now.

Okay, I'll stop now, sheesh!! Shocked Thanks again to all.


07/17/2011 09:41 AM
TamieJP
TamieJPPosts: 2316
Senior Member

Truth is, end stage is so varied. Cirrhosis is very different for everyone and as you've tried, you are not going to find something that says Imogen, your diagnosis is _____ so your prognosis is _______ . To get a diagnosis, there is a required test, scan, biopsy or something. But, your PROGNOSIS is not going to be on any web page.

I know because I've spent 1/2 a year trying.


07/17/2011 11:28 AM
mikealpha1
mikealpha1  
Posts: 2286
Group Leader

Two other commonly looked at test results are creatine and INR. These along with the bilirubin go into an equation to find the MELD score.

If you live alone perhaps you should consider getting one of those personal alarms, you push a button and it connects to a monitoring station and they can dispatch emergency personnel

The sleep issue, as you say, doesn't sound like the sleep reversal or other sleep problems experienced with cirrhosis. At least not the problems I had. I could sleep for a couple hours early, 9 or ten o'clock, but then be up until 3 or 4, and then sleep when I could in the day.

Welcome to the group.


07/17/2011 08:16 PM
bjlvls
bjlvls  
Posts: 1013
Senior Member

Dear Imogen, Once again, pat yourself on the back for making one of the most healthy decisions you can ever make if you're worried about developing liver problems. So many people close their eyes to the issues of eating healthy, exercise and stopping alcohol over-use.

There is, however, one important topic that you are seem to be overlooking: Often times cirrhosis is caused by conditions far removed from alcohol consumption or obesity. In fact, most people who drink too much or are obese DO NOT develop cirrhosis.

Because you are worried about your liver health, you need to see your doctor as soon as possible. You must go in prepared to be completely honest with him/her - admit your history of alcohol use, and explain in detail the physical symptoms you are having. I'm sure you recognize, keeping up with this group as you have, that the symptoms you are experiencing can also be symptioms of gall bladder or digestive system troubles. Please go, even if you feel a need to choose another physician, and be examined. Ask for an ultrasound, in addition to additional bloodwork, including a "Liver Panel".

I can only imagine how worried you must be, and that alone could explain your changed sleeping habits. Especially if your sleep is interupted by worries.

Welcome to the group, and keep us updated. No question is too silly to ask here, you're one of us now! Bobbi


07/18/2011 06:19 PM
ImogenWinter
ImogenWinterPosts: 138
Member

Dear Bobbi,

Thank you so much. You and Gail are true angels with your tireless dedication to supporting everyone on this forum. Your kind and gentle manner is such a comfort and I am grateful from the bottom of my heart.

To everyone else who posted back - a big thank you to you all as well for taking the time and effort to "talk" with me.

At the moment I am still very frightened and, being more or less symptom-free, I am going to go ahead and evaluate my routine blood values in September and make a decision from there. I may take a leap and consult with a hepatologist (we have an excellent transplant hepatologist from Harvard locally, although not sure if she sees self-referrals) OR it may be that I am more comfortable with watching and waiting, and believing that I am going to be just fine.

Most important of all is that I have stopped drinking, heaven give me strength! I may slip up now and again but I know that drinking can no longer be a part of my everyday life. I think once I get out of the habit I will be okay. Now that I know what it can really do, I don't even think I could enjoy it anymore.

Sincere best wishes to you all.


07/18/2011 08:47 PM
bjlvls
bjlvls  
Posts: 1013
Senior Member

Imogen, I will be thinking of you. I do hope you change your mind and opt for a full liver evaluation in September when your regularly scheduled bloodwork is due.

At any rate, I sure do hate to see you begin to drink again, knowing how hard it has been for you - worrying about your liver as you have. Quitting the wine was a big step toward good health in general, so why jeopardize it by allowing yourself even the opportunity to "slip up"? I know you are a strong willed lady with a robust zest for the good things that life has to offer. Make the best of that my friend, and get hooked on ginger tea or some other exotic and healthy refreshment. Pardon my crass expression here, but cirrhosis sucks. Don't take chances you're not prepared to deal with.

Loving Hugs, Bobbi


07/19/2011 06:10 AM
cocoa2010
Posts: 106
Member

Hi Imogen

My partner has ALD and seeing what he went through has put me off alcohol for life. I used to love wine and found it (too) easy to drink. I never felt hungover so I convinced myself it did no harm. I am very lucky the disease didn't get me too, pity it took such a drastic turn of events for me to realise. I now drink fruit juices and ginger beer. There are loads of non-alcoholic drinks around now. I always thought coke and lemonade were the only choices!


07/19/2011 05:08 PM
mpmom
mpmom  
Posts: 3275
VIP Member
I'm an Advocate

Imogen,

The others gave you good advice. But I wanted to Pop in and say glad you're out of the closet.

Seriously we're here for you. You've already done the hard part.

Starting the process to a better life is never easy.

I do agree with Bobbi however it isn't much more of a leap to have your liver evaluated.

A Couple of additional blood test and a US (Which can be ordered by your regular Dr.) will tell you a lot to start with.

But most important it will let you know if you should be looking for that appointment with the hepatologist.

The one thing I know for certain is that very often our fears are worse than the truth.

Regardless of what you decide we here.

BookwormPage8x

Gail

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