Cirrhosis Support Group

Cirrhosis is a consequence of chronic liver disease, most commonly caused by alcoholism and hepatitis C. Ascites is the most common complication of cirrhosis and is associated with a poor quality of life, increased risk of infections, and a poor long term outcome. Liver damage from cirrhosis cannot be reversed, but treatment can stop or delay further progression and reduce complications.

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Opinions?

Im 54 next wk, my dx(s) were 1yr ago. Long term intermittent drinker/drug use in past (non iv). Abstinence periods totaling 10 yrs total over the past 30 years. Longest stint 6yrs totally clean, ended in 2000. Last normal and documented liver panel was 2002. Fast forward, and now BLEAK outlook per Hep Specialist/Transplant. Weight is good, very minor swelling and flank tenderness in liver area. Plus the following, I welcome your thoughts.

No meld score "too low" to have one, AST 100, ALT 133, GGT 73, Platelets 225, Neutrophils 39, Lymphs 50, UIBC 65, Iron Saturation 82, Serum Ferritin 709. All other values are in normal range. Minor Ascites, benign lesions shown on ultras and 2 dif MRI. Due for CT, Endo, and Colonoscopy in 90 days (May 2012). Initially Fam Phy referred to local GI (who doesn't treat HEP C), GI referred to Hep Specialist/Transplant Surgeon to assess treatment of HepC. HepSpec will not treat until abstinent from alky 6 months, Im 35 days clean. Specialist insist I will need transplant & I have Cirrhosis. Insist that I get out of trying to figure things out or question dx. Need to get to AA for documented clean record which would be required to being considered for hepc treatment for future trans.

Fatigue primary consistent symptom which maybe related to depression or the fact I'm not working for the first time in 30 years (due to change in careers). I am religious about keeping low sodium diet and made adjustment and doing well. Only med is BP med ATENOL new prescribed and changed from Lisinopril that had been doing the job just fine. 600 of Milk Thistle he says is ok to drink.

Thoughts, Suggestions? I would have no hope if I didn't read your stories on these forums, he is NOT giving me any promise other than managing symptoms which will quickly be showing up. No way out of this other than i get the transplant "per him".

With no job I also have no medical insurance although recently I found the new health care reform act of 2010 will provide an option to purchase reasonably priced insurance ($300 mo) through Govt plan. If I take a new job that offers insurance then I wont be eligible for this insurance that at least on the surface seems as good or better than any smaller group plan, and guarantees coverage regardless of pre existing cond. Here is the link in the event you want to research for yourself. It has been suggested with my diagnosis that i apply for disability, don't see where that would help IF i could get approved. Right now I feel I can work fine, of course I say spending alot of my days in the bed.

Sorry for the novel, as usual no sleep tonight. Plenty of sleep though the day, days and night are reversed of late. Life all the others on the site I'm sure just wishing I would wake up from this new entertainment in my life.

Replies

deleted_user
deleted_user

To clarify my madness rant, doc says I will need a transplant in 2 years or less time.
deleted_user
deleted_user

Second note..then IM DONE, dont type and think your brain works well at 5:45 with no sleep. Relating to Milk Thistle, "he said it is ok to TAKE, not DRINK, lol.
deleted_user
deleted_user

http://www.healthcare.gov/law/features/choices/pre-existing-condition-insurance-plan/ky.html

This link is for KY, but at the bottom you can access your state info and the particulars. Thanks again, God bless you all.
deleted_user
deleted_user

Been suggested I attempt to get disability. The insurance plan requires you not have had insurance for 6 months and you have a preexisting condition whereby you were turned down by another company. Promise this is my last bit of dialogue taking up space on this site. Sorry for the funny typos, I really can spell and put sentences together although there is no evidence of it in my blogs.
pugdaddy
pugdaddy

Tony, I've found a couple of mathematical formulas that are apparently reasonably good at predicting disease severity, specifically fibrosis level. They use your AST level, platelet level, age, etc. I was already planning to call you later today to say hello-hiyadurin' but will run these numbers first and let you know what they indicate.
Also, this (.....supposedly "needed within 24 months" business) sounds like they think yours is moving pretty fast. Do you know whether or not they've done any test to measure the inflammation - or necroinflammatory level?
pugdaddy
pugdaddy

BTW, your platelet level of 225 is perfectly normal, albeit tilted toward the lower range of normal. Normal range is 150 to 400.
deleted_user
deleted_user

Hep Guy Has Done No Test..

Im gonna be out of pocket today but will catch up with you later in the week. If possible send me that formula and I look forward to seeing what you find. tonyoznky@gmail.com

Have a good day!
deleted_user
deleted_user

Hope it is ok if I chime in on this one. First and foremost, no doctor, be he/she hep specialist or just gp......can tell you that you need transplant UNTIL all the pertinent testing has been done so set your mind at ease that until the testing for transplant qualification and your MELD has been done, we shouldn't even be talking "transplant".
Next, once the formula for finding out the MELD (measure for end stage liver disease) has been determined, if your's turns out to be very low which I would guess from what you have said it will be low, then to even think transplant at this stage is not going to help you do much more than "worry". Your platelet count is fantastic as far as I can see.......the normal is 150-450. Mine has been as low as 25 and is now stable at 53. I bruise easily as a result and bleeding is something I do avoid. Needless to say, surgery is out of the question for me until they do platelet transfusion which I have had done 4 times with bad resulting side effects with 3 of those. Not worth it for minor stuff any longer as the "cure is worse than the disease" if you get my drift. It will take MRI/CtScan and possibly liver biopsy PLUS your blood workup to determine just how badly involved or cirrhosed you liver is. I would also hesitate to say your liver is in a decompensated state which is good. Now, I am not a doctor but I am thinking that "pre-existing" condition could not apply here since no "condition has been documented". Mere speculation doesn't count.
As for trying for SS disability, you won't get it just on your doctor's say so alone........there is a process by which you have to go to the doctors of their choice and then, if that/those doctors say you are disabled by such and such a percentage then and only then will you qualify. Sometimes you only qualify for a small percentage of disability and sometimes, depending on the severity of your disease/illness you could qualify for 100% total. You can, of course appeal their decision but I doubt it would do you any good until the degree of your disease has been thoroughly determined to be life threatnening. As for you nights and days being out of sync for sleeping/rest........many things can cause that including depression and the fact that you are worrying about all of this. Of course, cirrhosis of the liver can cause one to lose sleep and get their nights and days mixed up but it is not the only cause. Perhaps your doctor has seen something to indicate to him that you are in need of transplant in 2 years time but that won't mean a thing until it is documented with proper testing. It is but one man's educated opinion right now. So......I would say to stop worrying and find a way to go to a liver specialist who will run the tests to determine where you stand right now and then refer you to a transplant facility at that time if you indeed need a transplant. If insurance and money is a problem, look into clinics set up for those without insurance, in your community. Meantime, don't drink alcohol at all. I do know that they won't even talk to you at Cleveland Clinic about transplant until you have documentation that you have not had alcohol in any form for 6 months or longer. For me, not that alcohol is the sole cause of my liver problem but, I have not had a glass of wine or anything for 9 years. I got along just fine for 8 years before my liver began causing other organs to act up (decompensated liver at that point). Now that I have all of those other problems controled with meds, my liver inflamation is gone and I am back to low MELD and no where near transplant time. My liver was diagnosed 9 years ago as 65% cirrhosed or scarred beyond repair. Find a good diet and stay away from alcohol or even breathing fumes from anything considered bad for you. Don't smoke........easier said than done I know. I smoked for 30 years since a very young age but gag at the thought of cigarettes now 22 years since quiting. Do as much research as you can to keep up on what is happening inside your own body.....When any medicine is prescribed for you by doctor make sure he/she knows about your liver problem. And I have said it so many times.......prayer works wonders. There is a certain feeling of well being and healing with prayer and I don't know what I would do without having God to turn to. Sometimes, HE is the only one who will listen to me but I know HE will always listen and never leave me. This is a wonderful site to come to for support. Many who are going through just what you are going through now. There are no easy answers and here, one size doesn't necessarily fit all........we are all different. But one thing for sure........in this vastly rich and wonderful country we live in, no body should face a life altering/threatening illness without the reaization that they will be treated with the same care as the wealthiest of us. That is the one thing that has to be changed. Remember that when you go to the polls to vote this time. Nothing will ever change until everyone is treated the same, rich and poor alike. I do wish and pray for the best in your case and I will continue to remember you in my prayers. Hugs...CarolLentz
deleted_user
deleted_user

Carol thanks so much for your input and as with yours I welcome anyone's 2 cents. I have read a number of your post to people which are always upbeat and encouraging, and it sounds with your first hand experience you are of great benefit people via your hands on situations, lol. I have added alot of info on the ramblings of this thread but to address a couple of things you mentioned; The Meld Score, through multiple labs order by my primary guy and gi here locally I had the variables to give me the Meld which is (5), hence no meld score as I understand? In terms of preexisting conditions the inferior insurance plan that I had the last 6 months of last year sent me a certificate stating that I did have a preexisting condition that allowed them to deny all test. I "assume" that PreX was the confirmed Hep C diagnosis that I got from the local GI who then eventually sent me to the Liver Specialist/Transplant guy. Having gone through decades of negative diagnosis experiences with my Mom, who is still kicking at 71 but was told to "get her affairs in order" 4 different times since She was 25 I know the power of prayer, positive thinking and actions, the fact that Drs arent the all knowing (there is only one of those people), and in some cases "Denial" is a good thing. I'm not in denial in terms of not trying to help myself by continuing to drink or keep the salt shaker going in high volumes, but I can't say I have let go of the denial that He is wrong. I also know that things seem to change on a dime and without warning, so I may have a sudden onslaught of negative circumstances any minute. Until and unless that happens I'm going to stay oblivious in terms of not buying into the negatives of what can happen and just try to live my life. At this point I'm just trying to put together a plan to deal with worst case scenarios and continuing to live my life as if decades rather than months as he seems to indicate. At least before I have to yank out the old organ and slide in a new one, lol. MANY questions, few answers but as we both share in belief GOD will show me the way. I didn't necessarily do one of the typical "fox hole" prayers for God to intervene this time as he seemed to do so many times in other life crisis in my family, but I did make the vow that for whatever time I'm blessed I would make a more concerted effort to live life the way I felt HE wanted me to. I know God works through other people and I'm glad although being new that I have found so many that can help me on sites like this one. The job, insurance, all the what if(s) I know will be addressed over time. TIME, funny there is that word again. Thanks so much for you kind and knowledgeable comments, I welcome them anytime. I said a prayer of comfort and healing for you as I write this mail. Talk to you again soon.

T OZ
pugdaddy
pugdaddy

Tony I agree - Carol is a wonderful encourager; that gift of exhortation is worth its weight in gold in these circumstances that we're all dealing with. And I'm with you - neither you nor I have been through anything like what Carol and so many other courageous souls have soldiered through. I have to be 'out of pocket' for about the next 24 hrs, but will write you both again as soon as I can -
deleted_user
deleted_user

Hello - I read your post about going on disability. My husband was diagnosed with advanced cirrhosis in October of 2010. He went on disability in December of 2010 and I just read on the social security website that you are eligible for Medicare once you are on disability for 2 years. Perhaps this information will help you to make a decision about disability. I filled the form our online, it is lengthy, but well worth it.
deleted_user
deleted_user

I was put on disability almost immediately when I got ill. I say put on, because the hospital did all of it, I never touched a piece of paper I was so ill. It is a two year wait for Medicare once on SSDI, but will take care of your transplant if needed. I was put on a state medical insurance plan during the two year waiting period, hopefully you can find something like that.

You say your MELD score is 5. I was so ill I was originally 30+, but after a few months of care dropped into the 5-6 MELD range. Being that low, you will doubtfully even be able to get listed, even if a liver were available many, many people would qualify for it before you. Don't mean to be cruel, but that's how the numbers work.

When my MELD dropped, I wasn't even pre-considered for a transplant. This is basically recommendations from your doctors, medical tests, interviews, etc. They wouldn't have even wasted the time on me because others were so much more worse off. May be different with Hep C patients, so keep trying.

I've mentioned this before on many postings so please don't get bored. The liver and body have some amazing ways to heal and take care of themselves, it just takes a little work on our part. No alcohol, exercise and a good diet can do wonders. I'm not some new age guru but for some reason I did have a very positive attitude and I think that contributed. That is a lot of the reason my MELD went from 30 to the point where I don't even figure it out anymore.

As for the sobriety thing, it's a pain. I had to attend a horrible group therapy addiction thing for about two months, pee in a cup every week and basically sit in a room with people not at all my type while we discussed things in "group". Most of them were court ordered drug addicts or had multiple DUI convictions so you got all types. I still remember one man, probably not even 35 who was there because of seven DUIs. Why he was still allowed to drive or how he possibly paid his legal bills is still something I wonder about.

You can print up your own attendance slips or maybe get them from an addiction clinic, but there is usually a meeting leader at AA who will sign them to show you've been attending. All they need to show is your name, name and type of the meeting, date and a quick signature from the meeting leader. Keep these as they will prove your six months sobriety. Also don't try to sneak a drink here or there, your doctor will know based on blood tests.

They don't even ask me any more. I'm on pretty high maintenance watch, so see a doctor about 16 times a year, not including other issues. They always require a blood test before a visit, so they'd know immediately if I were drinking. While not to brag, it will be five years next month.

I would get referrals for new doctors if I were you. I've been lucky and so far have always had excellent treatment with no attitude. As for the one guy saying there's no way out except a transplant, he's full of BS. As mentioned above you will never even be considered for a transplant with such a low MELD score. Find some new doctors who care and can come up with a better plan.

Also wanted to mention the milk thistle. Lots of "tests" supposedly in Germany and elsewhere, but for me it did nothing. Just spent a lot of money for several months without a single change to my blood results.

Maybe it works for some, but I found it to be a complete waste of time and money.

Good luck with things.
deleted_user
deleted_user

Thank you both for allowing me to add my penny's worth on this forum. It is a "balancing" act once something like this liver disease is diagnosed and so often, we begin the journey on the negative, out of fear and blissful ignorance if no other reason. It taks a lot of research, listening and averaging everything out to come up with answers for our own specific case. I remember the horrible way I felt when I was diagnosed out of the blue with 65% liver gone. I wouldn't want to wish that on anyone and realize that had a doctor who knew what he was talking about had been available at the time, I would have spent a lot less time wasted in depression and giving up to the "impending doom" that I was sure was right around the corner for me. On this forum, together, maybe we can make that sometimes very long journey a little more peaceful for each other..a little more "hopeful" and a lot less "hopeless"..........I do with you both well and thank you so very much for the prayers. You do and will continue to have my prayers for your situations. Hugs and prayers..........CarolLentz