Hep C Discussion Forum

kdh · Member

RE: diagnosed as end stage cirrosis

Loopy Lisa · Guru

Hi Kathy,

The best advice I can offer, that was once given to me, don't worry until you have all the facts.

I began scouring the net, came across a billion horror stories, was convinced I was doomed and felt like I was in a hole. That was a few years back now.

Now it is just a normal fact, and I live perfectly normal, and my friends and family are great apart from forgetting and offering me a glass of wine at social events - sooo tempting sometimes! :D

At this stage, you should think about caring about what you eat and drink, take the strain off your liver and body. Sugar is the devil, salt shouldn't be added and fresh foods are king. No soda, or sweetened drinks, I hate to say it, but water is the goddess of goodness! Eat clean, be a queen!

I can imagine you are very confused, a bit scared and desperate to know what is going on! Take a step back, a deep breath, and find a doctor who actually has some bedside manners!

Anyway, a huge cyber hug, and you may even have better results than you hope when you find a good doctor!

kdh · Member

thank you Duane, I did find 2 hep dr's in Sacramento, now it's just getting them on the phone. I tried yesterday at 4:10 to call, after I finished everything I had to do, but no answer. I've found that lots of places close at 5:00, but quit answering their phones after 4:00, so I'm going to call again this morning to see if I can get in at all. They seem to only take a certain kind of insurance, so I hope they will take mine, then I'll go from there. Yes I've had MRI's, and the main problem with that is the pain in my back to have to lay on a hard surface, and perfectly still for what seems like 2 hours hmm . But I'll do what I have to, to get this taken care of.

thanks for the support,

Kathy

Dzdayscomin · Senior Member

Kathy if I were you I would just focus on getting treatment for the HEP C............ if you have no symptoms then don't create any worrying.

If you have no symptoms, you get treated and the Virus is gone, you can expect to feel pretty much no different than you did prior to finding out and probably better as the virus does play havoc with our bodies.

I got that same message you did by chance Nov of 2011 only I had decomepensated symptoms already, and I have been treated and cured of hep C, and on the transplant list since dec 2012 and still going, so you my friend will be just fine, the stress will do more damage than anything so try and relax.....the nice thing now is that these tx's are almost 100% effective..... when I first found out the tx's were not even available to decompensated cirrhotics because it would have killed them then came Sovaldi !! now there is Harvoni ...if nothing else your timing is great for tx.

Get a good Hep doc if you can and before you know it this will be behind you, your liver function will improve after eradicating the virus and....I believe contrary to what Dr's say that the liver will heal itself somewhat.

Another thing get screened for HCC ( Primary Liver cancer) that requires an MRI but it's painless and takes about 45 min....... unless you know how to trick the machine with breathing techniques and you can get it done in less than 30 min ;) LOL

Again if you have no symptoms, get treated ....you will live to old age before that liver gives out on ya ! they are pretty tough !

Hang in there.

Duane

kdh · Member

Yes Dragonfly, I would love to try the tapes. Not sure I've ever heard about him, but I'm assuming I can probably get on Amazon and find his name and tapes? Thank you for that, it is something I would most definitely try. The health news I just received went right on top of me letting my 21 y/o granddaughter live with me for the last year so she could get on her feet. How little I know about her generation. We helped her get a car, and she got a job, then I was saving some of her money so she could put the down on an apt., however, that apparently wasn't meant to be. She got fired (in reality her bosses were nuts themselves), so it was bound to happen I suppose, but her partying and spending the night all the time with her loser friends really started the stress going good, so she's moving out the end of this month, then my hep news. I honestly almost had a breakdown, which is when I joined in here. Yes, I most definitely will be in Amazon today looking for the tapes.

Thank you!

Kathy

dragonfly · Senior Member

Hi could I refer you to a hypnotherapist called Paul McKenna his tapes help you to relieve yourself from stress they helped me as I stopped dealing with negative feelings. Maybe they don't work for everyone but its an option. I know that since I have relaxed I don't constantly worry about affecting others. I hope this is helpful and not preachy,

Nx

dragonfly · Senior Member

You will be ok; according to my docs with my rock and roll lifestyle I should have passed by now. I worked for a band for 10 years before knowing my diagnosis which meant a line of coke, a joint and a calvados before breakfast! If I can do it you can.

Nxxx

kdh · Member

Thank you all who have responded, your information is priceless to me. Right now I'm on the verge of tears with the support I have from you. I even laughed when I read your "Kung Fu Panda" smile Dragonfly. I'm sorry, I should have given more info on myself, but my main goal was to just get set up so I would be able to discuss what is happening to me. Knowledge is power. I live in a little town just outside of Sacramento, CA. Unfortunately with my bad back, I'm incapable of sitting in the same position for very long. I was living in El Dorado county before moving here (South Lake Tahoe is also El Dorado County) and that is where I retired from after 22 years at my last job. There is just my husband and I, and I know this isn't easy on him, but after I told him what many of you were telling me, I could see the relief in him that we may now be able to understand much, much more. Also, when I was in with the doctor, he showed me a chart with what all stages looked like, and he circled the very last one. He said something about a liver transplant as he was turning from me, like he was talking to himself, then looked at me really quick, then said "no, no, no", as he was walking out the door. I don't know what that meant, but at my age, there's no way I would want to take a liver from children or people younger than me who are trying to function in life to take care of their families. So I would not want to be put on any waiting list.

Again, thank you all,

Kathy

Millercollaborative · Member

Hi, I've also been diagnosed with "end stage liver disease" and have never had any of the complications of disease like varices etc. It seems to be almost a synonym for cirrhosis. The no complications means that it is well compensated, which is great. I had Hep C for over 40 years, and was able to get rid of the virus two years ago. I am sure you will too! Medicare and Blue Cross should definitely pick up the tab, and you are so right to be looking for a hepatologist who can explain everything to you.

mallani · Guru

kdh is from CA, USA.

Marktq1 · Member

Hi I am wondering are you in the UK? I ask because over here they refer to cirrhosis as end stage liver disease and do not stage cirrhosis as such tho there is a system of scoring to determine transplant eligability and to a degree life expectancy , this is largely rated by your symptoms so again without symptoms you would be most likely be in what is called compensated cirrhosis. If indeed you have cirrhosis at all as without a biopsy or a fibroscan I don't think a definite diagnosis of cirrhosis can be made

Is it possible your doctor said you had end stage liver disease rather than end stage cirrhosis ?

seeing a heptologist is your best bet you need a doctor who knows what he is talking about and that you trust

dragonfly · Senior Member

RE: diagnosed as end stage

Jaded · Senior Member

RE: diagnosed as end stage cirrosis

kdh · Member

Thank you all for your responses. I am immediately going to look for a Hepatologist Monday. And no he never gave me anything, nor did he discuss anything with me, so all the words you are mentioning I have never heard them before. At this time I'm going to write those down to take to the new doctor. I think I'm really shocked because he said "end stage", and I've never had any indication of anything being different in my body. Thank you so much for starting me on the right path, with the right doctor to see. I will keep everyone advised after I see the new doctor and know just a little more with what I'm dealing with.

Thanks again, you've given me hope and headed me in the right direction.
Kathy

Tess · Senior Member

kdh,

Ditto everything that has been said. I am no expert but please keep checking in for replies and search the forum for info. You will receive a lot of good information here from very knowledgeable people. It certainly seems like you need another doctor and another opinion.

As Tig mentioned you have the right to your blood work results. Doctors' offices know this rule. Just ask for the results and they will give them to you. Having the results & numbers will help you understand your situation better while waiting to see another doctor.

It's not clear what the doctor meant by "last stage" with no complications. Perhaps it wasn't cirrhosis he was referring to but instead chronic hepatitis C which you might have had since a blood transfusion 46 years ago (long term)? Hep C is very treatable now and although expensive, there are many avenues for assistance with the cost.

Best wishes to you.

- Tess

-- Edited by Tess on Saturday 2nd of May 2015 04:31:27 AM

mallani · Guru

Hi kdh,

As others have said, something's wrong here. You don't reach end-stage liver disease with no symptoms and ' no complications'.

Tell us some of your results as suggested, or get an opinion from a qualified Hepatologist.

Tig · Admin

Hello KDH,

Welcome again! I'm glad you have started the introduction and expect you will receive replies from the others soon. Let me remind you, do your best to not worry too much. Things will work out. There are several new treatments now that are easy to tolerate and very effective.

First things first. If you have only had only blood tests to determine your cirrhosis stage, let it be known that in my opinion, they aren't that reliable. Especially at the lowest and highest levels of fibrosis determination. You need to get either a Fibroscan or a biopsy to get a more accurate determination. If your doctor considers you at end stage cirrhosis, you need an accurate test. The next thing I would recommend, as Skewed mentioned, request to see a Hepatologist that is specialized in handling HCV. A Gastroenterologist that comes off cold and uncaring at this stage of your care, isn't going to be helpful as you progress with treatment. Your doctor should be fighting to help you obtain treatment, while providing you the tools to do it. Get another opinion at your earliest opportunity.

At the bottom of this post, in my signature section, there is a red highlighted link named Payment Assistance. Clicking that red link will take you to a section here with the names of several organizations that will determine your eligibility for payment assistance with treatment. We have many people here that have used those programs to obtain free or almost free treatment, depending on your qualifications. It depends on the actual course of treatment recommended to determine the organization(s) to contact. I will help you when the time comes and I'm sure anyone here that has the information will provide you with recommendations on moving forward. Nobody here has had to pay $80,000 or more for treatment! There are options, trust me.

It sounds like you have had to travel a rough road or two during your life. Don't get discouraged now, because this is treatable and as soon as you can get started, the faster your life will improve. We're here to help you travel this new road. But this time it will be a lot smoother traveling!!

If you have any of your actual test results, please feel free to share the actual number values. Your doctor should have tested you for the genotype, the viral load (amount of virus in your blood), along with tests like the liver profile, including the ALT and AST, and a CBC or complete blood count. If your current doctor has performed those tests, you have the right to a copy of each one, demand it. If s/he hasn't done them, run don't walk to a new liver specialist.

So stay in touch and if you can provide some additional information, it will be helpful. We will provide you with as much info as possible and feel free to ask questions. Use the search function at the top, just enter a keyword or two and you can find a lot of info here on the forum.

We're all glad you're here!

Another helpful link here:

http://hepcfriends.activeboard.com/t58862021/forum-abbreviations-link-and-help-with-creating-your-signatu/

Groupergetter · Guru

kdh, what does your lab report show? What are your ALT, AST, Platelet count, and bilirubin numbers. Do you know what genotype you are, and your viral load/count? Dr. should have discussed this with you. Sorry to throw so many questions at you, these would give some indication of your liver status.

Your doc sounds like he/she is very lacking. IMO to make an "end stage" statement without a full explanation, is gross incompetence.

skewedButNotBroken · Senior Member

I'm sure others far more qualified than me will chime in, but end-stage cirrhosis and "no complications" seem like an oxymoron. The first thing I would do is find a hepatologist to get a second opinion.

kdh · Member

Hi all, I was just diagnosed as end stage cirrhosis, and have not had any symptoms. I went to a gastro specialist who had my blood drawn, and advised me I was in the last stage, told me the pills would cost $80,000, then left. I had no chance to ask him any questions. He was cold, distant and impersonal. Now I'm completely at a loss. I'm 66, have medicare and blue shield, with my main problem of a bad back for about 30 years that is getting worse after a single car accident. My doctor was trying me on new blood pressure meds. I was on this new pill but felt like bugs were under my skin, so I did just quit, something the doctor told me not to do. I had just gotten in my car to go to work, and only got two houses away when I had a stroke. I remember nothing about that day, except it's when my back started hurting. When I was 19 or 20, I had internal bleeding, so probably a transfusion also, it could have been then I got the Hep C, but it was never found until about 3 years ago when my GP saw traces of Hep C, so I winded up going to this rude gastro guy, who gave me the news. I don't know what other info anyone wants to help me, but I will answer all your questions and hope it at least gives me some hope of what the future holds for me. Oh yes, one more thing the gastro guy said before walking out and shutting the door was "well the good news is you have no complications". Thank you all for any help you can provide me with.

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