Cirrhosis of the liver/End Stage of Liver Disease

[mercedesklo]

It's been 7 years since my last post and a lot has happened since then.  I endured the worst pain I have ever had, including more pain than having a baby, yes, I had tried to pass a kidney stone, it was too large to pass on my own so next was surgery.  When I woke up in recovery, the doctor told me he removed the kidney stone and while he was walking away he says, "oh, by the way, you have severe cirrhosis and he walk away.  I was still very groggy from the anistisa but was able to ask the nurse and my daughter what did he say and I started to cry.  The doctor was called back to my room by my nurse and he explained that my blood work showed I have Hep C and the ultra sound show severe cirrhosis.  This was 2 years ago, my health has declined and my husband of 18 years divorced me.  When I was in my 20's I did my fair share of drinking, clubbing and met a man whom I fell in love with. I went to the clubs because I love, love to dance, my boy friend like his drugs and one night I was really drunk and I saw him shooting up some drugs, I had no idea what it was or what it did to you, but I ask him to give me some, he said no at first and I persisted so he shot me up with Heroin, I don't remember any of it, I apparently past out, drinking and drug to not mix.  The next morning he told me what happened.  A year and a half later I found out not only that I was pregnant.  I stopped drinking and I never did heroin after that one time, I basically wanted to slow down start a career and be a good wife and career mother.  3 years later I learned I had Hep C but it was on the boarder line and they offered me no treatment at the time. My son's father passed away in 1997 and I since remarried.  It's been quite a life I lived, although my late husband used drugs through out our marriage I didn't, I haven't had a drink or street drug since 1990.  With my health declining as I am getting older and survived living through the 80's it's not surprising I got all these diseases.  Having "Ulcerative Colitis, HPV, Hep C, kidney stones and now severe cirrhosis of the liver. I did go see a liver doctor, because I had started to have symptoms that I wasn't aware was Cirrhosis, but I knew I was sick.  I would fall down alot, my hands shook like crazy, everyone would tell me to go see a neurologist, I got huge bruises that lasted for months, my nose would bleed easily, my memory was shot and my personality was reserved, I wasn't able to be me.  I slept all the time, now I sleep all day and awake most of the early morning hours.  I had to go on SSD Social Security Disability, however they told me I got too much money from that, that I didn't qualify for Insurance.  So I am unable to have treatment.  I'm bloated from hands arms, stomach, legs, ankles to my feet.  I can barely drive anymore, my reflexes are very slow to react and I am scare to drive because of that.  I've accepted the fact that I have this god awful disease and I have to do my best on my own, most of my friends have abandoned me, I don't know why either, they know I have this disease but most people refer it to either a result of drinking or drugging.  They don't know enough to think it could be Hep C or even any other immune diseases I have. It's a very lonely disease and so far I'm feeling very dirty all the time.  I'm back living with my ex-husband of 18 years of marriage, he said he'd be with me till the day I die, he said, I can die in his arms.  I do believe I'm in "End Stage of Liver Disease" but I can't afford to go to the doctor, I have been to the ER twice and they did a ton of tests. EKG, CT scan, four or five tubes of blood, this was 3 months ago and my doctor last week my GP will be reviewing my test results and has ask me to find some kind of resource out there that can help me with ins.  So there it is, I do not want a liver transplant, I want quality of life rather going through treatments which make you so sick you wish you were dead, why bother I'm 56 years old, I have lived a fantastic life and honestly I'm done, yeah judge me tell me I'm a quitter, how I should live out my life, I've been sick for years and I am done, I'm sick and tire of being sick and tired.  I'd like to know just like anyone else when is the end, how much longer do I have, do I prepare my children and siblings?  I'm scare of the unknown, I'm not afraid to die, just how much longer so I can prepare everyone for that time.  I very much like this website, I've loved the support I get, because all my friends have abandoned me and it just seems you all understand.  I tried another online Cirrhosis group and there were a couple of people who were really mean and I find that its not only unsupported but not necessary.  This one guy says to me on one of these posts, Start Liven or DIE!!  Stop drinking.  He obviously didn't read the fact I have drank or have done drugs for 25 years, you see how it's as if this is a stereo type disease, most automatically think you are a drunk.  This website is supportive and I will keep you all informed until I can't anymore, then my daughter can take over not for me, but for her.  Thank you  all for your continued support, God Bless!!!!!

[hepcandme]

But you're still so young! You definitely need a liver specialist right away. The new treatments are not so bad and they are very effective. Do you have Medicare? That should do it. Gilead (the people who make the new drug, Harvoni) will help if you have no other resources. Please go see a real doctor. You can get better but your symptoms show that you have a serious liver problem

[mercedesklo]

No I have no medicare, no ins. at all.  I was told 2016 I'll be eligible.  I've taken medicine for my Hep C and it's done nothing but make me very ill, I'm just so tired of being sick & tired. After the holidays I am reapplying for medicare.  I do have a liver specialist, they won't see me till I have my insurance.  The system in my opinion *****!!!  

[johnny679]

You are very down at the moment and as you are sick it is  making you feel so so much worse , please see a doctor and fight ! don't give up .
HCV is a terrible disease and so is cirrhosis but really there has never been a time like this where it can be cured and once you are cured your liver can reverse a lot of the damage and you can live a normal life span .
It is very hard and I feel for you but don't give up , you have kids , your only 56 c'mon , fight now and start making some noise with doctors .

[mercedesklo]

Thank you Johnny!  I do need to go to see a doctor and I did see a Liver Specialist a year and a half ago, she look at my blood work and did a physical exam and told me to come back in 6 months.  I had moved to Calif. when my husband & I got a divorce and when I started to notice how sick I was I decided I was going back home to my ex-husbands & my home, because he wants to take care of me and I have ALL my doctors here that know my medical history.  I will make it my goal to get on board after Thanksgiving and call SSD to discuss why I couldn't get medicare and do I qualify now and if not what in the heck is a person like me who was deemed my the Federal Government that I am permanently disabled and yet not give me insurance, it doesn't make sense.  Thanks for your support and have a Thankful Thanksgiving as I will do the same.  Blessings!!!

[mercedesklo]

Home is Texas by the way

[flyinlynn]

The newest medicine one is called Harvoni it could be as simple as 1 pill a day and with you having cirrhosis for 24 weeks. Harvoni has been very effective with results for many above 98 %  a little lower for those with cirrhosis but still very good.

Many have reported little to no side effects. And some are beginning to report improvement in the health of their livers. But you likely need insurance to get this medicine.

Please try to fine out what you can about getting treated. You could also contact my support path from the makers of Harvoni to see if they have any suggestions

http://www.mysupportpath.com/

Providers and patients can call 1-855-7-MYPATH (1-855-769-7284) for assistance

best to you

[mercedesklo]

Thank you so very much!!!!  Happy Thanksgiving to you and yours...........

[johnny679]

Please do not wait , make calls , call support path , surely you will be helped you are in the united states .
Once hcv is gone the liver is a amazing organ and may heal a great deal .

[SurfsideGal]

You might want to contact the Texas Liver Institute in San Antonio. Dr. Eric Lawrick, a partner of Dr. Poordad, may be able to help you. Ask for Ms Sellers, if you decide to call. I know they do some pro bono work.

[fretboard]

You are likely eligible for ObamaCare.  Time to look into adjusting your quality of life.  HepC is a hideous virus and will take you out if you do nothing at all, but I'm sure you know all that.  good luck

[trulyamazed]

There is hope no matter what! I am also struggling and you sound like I did. I started to give up and got very depressed. But you, like me are determined as is the proof we are on this site communicating. I watched my older brother go thru a liver transplant a year ago in his 60's and he is doing great! I do not know what my future holds either, I am having a liver biopsy Thursday and treatment begins on 12/15.I stay fatigued and feel unwell but the antidepressants have helped. I do not have insurance,have a salon but have not worked since 06/20/2015. I applied for assistance at GRU formally Medical College of Ga. and got 100%. Maybe there is a hospital near you who will do that.Don't give up!

[orphanedhawk]

You should be eligible for disability and therefore medicare.

When I was diagnosed with hep C I already had End Stage Liver DIsease. I did inteferon treatment and relapsed. I said I'd never have a transplant, but at the age of 55, with only 8% of an active liver, that is exactly what I did.
Now, I'm 61. I did interferon treatment again, after my transplant, which wasn't fun but much easier than the first time around.

You are fortunate to have supportive people and that harvoni is now available to treat your virus. Hep C is a virus and how you got it is not relevant.

It's up to you but if you want to live, you can. There's a cure for hep C.

[Livelife777]

So very sorry for what your going thru.  You mentioned you can get assistance in 2016 which is weeks away.  It would be wise to find at that time a transplant center that can help you with getting treatment for your Hep C.
The new treatments are not near as harsh as in the old days and very doable.  Curing your virus would make you feel both emotionally and also physically better.  That is your first step and hopefully your liver will gain some momentum with healing.
Don't be hard on yourself.  We have all made mistakes in our lives and you are very courageous for asking for help.
My thoughts are with you.
......Kim

[ceanothus]

I had to respond to your comment about being hesitant to take treatment because you want quality of life. Current treatments may have no side effects at all, but even if you did have to take the dreaded interferon you have to think of it this way: with treatment you get some number of months of maybe being pretty sick or maybe not, but if you are cured you then get many years of good health added to your lifespan, AND you probably don't die of liver failure - which is an exceptionally unpleasant way to go. I had hep C for 30 years and cirrhosis for 9 of those years. I treated unsuccessfully 2 times then finally had success on my 3rd try and was cured about 3 years ago. My health is so much better now that it is amazing, and my liver is remodeling itself and looking less cirrhotic all the time too. I had people advising me not to treat that last time, for the same reason you stated, the quality of life issue. I'm so glad I didn't listen to them, as my life now is of far higher quality than it was and it can't even be compared to the quality of life for someone who is dying of liver failure.

I'm going to be looking forward to hearing of your getting on Medicaid (I'm sure you must be eligible) and getting treated, and ultimately getting cured and regaining your health. Don't wait any longer than you have to.

[GP7852]

I just read your initial post.I didn't realize until yesterday that my liver biopsy that showed severe cirrhosis (I am stage 4) was done in 2000,almost 16 years ago.Although I have a lot of side effects (itching,leg cramps,blood in the nose)I still think of myself as healthy.I go to the gym everyday and I am in better shape now than I was at 20.My point is if you take care of yourself cirrhosis is not going to kill you overnight.While your waiting to get your meds which you will eventually get take good care of yourself.Alchohol is your worst enemy if you should ever krave a drink.Get out there and walk.When I asked my doctor if cirrhosis can be reversed he told me once I get rid of my hep c I can go from stage 4 back to stage 3 and live a normal lifespan.
                                 Best of Luck     Glen

[mercedesklo]

I have SSD income but there is a 2 yrs. waiting period, I have even tried Obama Care and they want $300.00 + with a $2,000 deductible, how can that be possibly be helpful with people who have a monthly income of $800.00 month.  It all just makes me ill, they don't care, I wondered if Obama Care that our president even check to see how their gouging us.

[Dee1956]

Hello, in addition to the PAN you can also contact Gilead for help with funding.

I have heard of people calling for support at transplant hospitals and they will help.  Also I have heard of Gilead helping people as well

See this for more information and the number
http://www.medhelp.org/posts/Hepatitis-Social/Saving-lives/show/2878902