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What are my Real chances for survival?
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What are my Real chances for survival?

I've never, ever written to anyone online before, so here goes.  Last year in August I wasn't feeling well.  After several blood tests and a liver biopsy in September I was diagnosed with hepatitis C, cirrhosis, and steato hepatitis and the disorders that go along with them which are hemochromatosis, thrombocytopenia, and polycythemia.  I have no idea how I caught HCV, which I am still adjusting to. However I caught it, suffice it to say that to me it's no different that catching syphillis (syphilis) when you've never had sex yet. An internist told me there is a 25 to 30% chance of getting rid of it with treatment, and if I have cirrhosis a 10-15% chance as people get very anemic on the treatment so it must be stopped.  I was then sent to a liver specialist at a transplant program.  The liver doctor said most people don't try to get rid of it because their is a risk of going into immediate liver failure thus requiring an immediate transplant, but I should try. I was required to undergo a lot of testing to get listed for a transplant just in case the treatment failed.  I have completed all but some minor dental work.  Since I've had more time to think about the virus treatment, and the chance of going into immediate liver failure, I've had some very real concerns.  I have found out through recent lab work that I show positive for the Epstein Barr virus, positive for cytomegalovirus, reactive for rubella, and varicella zoster.
None of these I knew I had.  What I know I have is RA, Fibromyalgia, Wolff, Parkinson, White Syndrome and Mitral Valve Prolapse which is now small. I have hypothyroidism and take levothyroxine daily. In the past I passed a kidney stone.  I have a history of TB as a child, a history of DVT with chronic venous insufficiency, thoracic outlet syndrome, pansinusitis, and parotid gland and tumor removed, and Frey's syndrome.  What I have been diagnosed with this year which is from the hcv and cirrhosis is portal hypertension with esophageal varicies, hepatic encephalopathy, Gout, Gallbladder disease and stones, and I've been trying to keep until transplant due to my risk of bleeding. This year I was diagnosed with GERD, mild COPD, and bilateral spondylolysis in my back.  The other problem I have is when they did the cat scan last year, it showed an infrarenal abdominal aortic aneurysm of 3.1 cm.  Something new. I've had several cat scans and I have received measurements on the AAA from 3.1 on 10/08/10, a 3.5 on 10/18/10, a  3.3 in 01/21/11, and finally a 3.2 on 7/28/11.  It shows with asymmetric 5mm atheromatous plaque along the right anterolateral aspect of the aneurysm. Atherosclerosis is moderate.  Can you tell me what this means?  Is this associated with the virus, cirrhosis, or illnesses caused  by them?  Also, how can the aneurysm change size like this?  Shouldn't it stay the same size and watched to make sure it doesn't get bigger and rupture? How can you do that when it changes size? Do you know if the doctors will repair it surgically before the liver transplant, and if not is their a risk of rupture during the liver transplant?
I have been retaining fluid in my feet/ankles.  The last 2mos, my left foot/ankle w/severe groin pain. My question is can the plaque in the AAA have broken loose and got stuck in a blood vessel which is cutting off circulation to the left foot?  The Dr.'do not feel a pulse in that foot. I had a PAD test which was fine and they still don't feel a pulse.  What test can be done to see if there is plaque blocking the vessel or any area that supplies the foot and ankle? Finally, I have lumps on my abdomen in different places.  I get an intense itch on a spot on my abdomen, and when I go to scratch it, there is a lump there.  I only scratch it for a second as it makes me feel ill and stop the minute I feel the lump.  Does anyone have a clue what these lumps are?  
Also on the cat scan, there is a small focal lesion identified in the liver.  The report says it is a 2mm well- defined hypodensity that is too small to characterize.  The doctor has added an AFP tumor marker to the lab work which came back at 15.8.  Is this to keep an eye on the lesion in the liver.  Has anyone had this before?  What does the reading mean?  
As to the hcv treatment, the doctor has put it on hold.  My platelets have gone from 94, to 89, then 81, now 52, which gives them no room to play with.  What I don't understand is the hcv I have takes only 6 months to treat, but why do the Dr.'s say I need treatment for 1 year.  Does anyone know why?
I also have a terrible problem with my knees that I sent an earlier post on. Recently I found something on a website that talks about deterioration of the long bones that occurs with cirrhosis.  Has anyone heard of that?  Finally I wish I had a Dr. who explains everything to me.  No one has. Anything I know came from a website or a book. There was the gastroenterologist who diagnosed me and sent me back to the family doctor who sent me to the transplant center and a doctor there, and not one of them, not even the family Dr.  has ever explained the hcv, cirrhosis, blood disorders, the aaa, nothing at all.  I think they all assume that the doctor before them has explained everything to me.  Sometimes I think I'm going to crack, and I don't know how much more I can take.  I worry about the transplant and all the illnesses I have coming back or the anti-rejection drugs and all the illnesses I have they will bring out and make worse, and I'm very scared, and their is no one to talk to.  My husband has been ill for 23 years, and I know he will go before I do.  I'm worried about that and what I will do then.  I don't think he will make it a year, and if I have a transplant before then, he will either be gone or definitely unable to take care of me.  I actually have no one to take care of me.  The social worker said my 82 year old mother cannot, and neither can our daughter as she is having a baby.  There is no one else.  I'm afraid I worked 70 hours a week and was married to my job as I have been the sole support of our family for 23 years. HCV and cirrhosis now explain why I had no energy for anything else but work. It's awful how long they deplete your body of energy, and make you think somehow that it's normal.  My spleen is also grossly enlarged.  What does that mean, and why are they so concerned with it? I have enlarged lymph nodes in the porta hepatis and around the pancreas.  What does that mean, and why are they around the pancreas? If you can answer any of my questions, I would really appreciate it. Thank you for listening.  Lastly, do any of you think I will make it through hcv treatment without going into liver failure?  How high should my platelets be if I start treatment? Do you think I will make it through the transplant with out dying from all of the illnesses I have, and the ones that can be reactivated?  Do you think I will survive a year after the transplant on anti-rejection drugs when they re-activate all the dormant illnesses?  How much time do you think I have?  I forgotone. I was told on 08/01/11 that I do not have ascities.  Then in September when the doctor filled out an LTD form the ins. co., she wrote I had ascites.  Can she tell that I have them from the physical exam she did that day in September?  They didn't show up on the CT scan a few days before 08/01/11. Could they appear a month and a half later like this?  Sad to say, with the ascites, I now have all of the symptoms of cirrhosis.  I thought the ascites were a long way off. Now that I have them, how long does it take for the ascites to get worse?  I better close for now as this is not a post, but rather a journal:o)  I'm sorry about that.  It is the first time I've ever done this, and I'm afraid everything came out.  Thank you again for just being there, whoever you all are.  I'll pray for all of you.  Take care and wishing everyone the best of life.
Pameline
Tags: cirrhosis
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419309_tn?1326506891
With all that you have to deal with, the best specialist for you is indeed a liver specialist, or hepatologist, at a Transplantation Center.  Your hep c and hemochromatosis are a double whammy and are most likely the contributing factors in you having cirrhosis and steatosis -- the thrombo and poly are not unusual in the setting of cirrhosis, they are fairly frequent complications that come along with progressing cirrhosis.  The important thing now is not how you got hep c or or whether your chances are 10% or 30% for getting rid of the virus, but that you have a doctor who can assist you in doing so and provide you the appropriate safety net.

The fact that you are asking questions is good.  There are lots of helpful folks here, but keep in mind no one here is a professional or expert, and certainly the best person to ask all these questions specific to you is your doctor, who has your history. Hector is right, there's a lot to understanding liver disease, and we'll certainly try to help where we can, but certainly what we talk of is 'generalities', and every person is different.

Some things that you DON'T need to be concerned about, though, is the positive results for cytomegalovirus, rubella and varicella... it just means you were *exposed* at some point to CMV, rubella (vaccination would make you positive) and varicella (aka chicken pox!)... nothing to be concerned about at all.  I know nothing about the Epstein Barr virus, though, so can't comment on that. As far as WPW syndrome and associated complications, you should certainly be seeing a cardiologist regularly, at minimum.  

Fluid retention in the limbs is also a symptom of cirrhosis (called edema), and with possible ascites, definitely a good idea to keep salt intake to a minimum... always a good idea for someone with cirrhosis.  Oh, and ascites can come and go, it's not a constant.  Not sure what the lump situation could be, but itchiness is also something that can come along with cirrhosis, especially if you have elevated bilirubin.  Cirrhosis can also reduce the amount of calcium and calcium absorption in the body, so that may be the "bone deterioration" you mentioned.

As far as the lesion is concerned, it's important to follow that closely with 3 month imaging at regular intervals.  Unfortunately the technology currently available is not very good at diagnosing masses in the liver, and often times it's a "watch and wait" approach.  The fact that your AFP is 15.8 is encouraging, means no big red flag for malignancy... hopefully your lesion is benign, as most liver lesions are, but very important to keep a close eye it.

Most people who are treating their hcv do not have cirrhosis, and have better responses as a rule, and can often rid their hcv with 24 weeks of treatment; however, with cirrhosis, the odds at stake are huge, and with success rates somewhat lower, doing the 48 weeks is generally considered the wiser choice to get the best result possible.

No one can tell you how long between cirrhosis and liver failure...there are so many variables... some people live for years, a decade or more with cirrhosis without going into liver failure... everyone is different.  The important goal is to NEVER find out.  Educating yourself about what it means to have cirrhosis and what you can do to reduce stress on your liver will be your best ally; take the opportunity if you have the option to treat and get rid of this virus... and, because you have cirrhosis, it's important to be linked into the Transplantation system and to be familiar with what that entails, just in case you run into the need for TP sooner rather than later.  Hope that helps some, and welcome to the forum.
~eureka
PS... NO iron, NO alcohol, get rid of salt, read labels for sodium content, stay away from red meat, and keep fat to a minimum.  Eat frequent, small meals, get lots of exercise, and think positive!
Related Discussions
11 Comments Post a Comment
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Avatar_f_tn
Hi Pameline...welcome to the forum and I'm glad you found your way here.  I don't have any answers for you at the moment as I've just come across your post on a quick read of the forum before work and it's a lot to absorb which is okay, it just means no quick and no trite answers for you.  Just wanted to acknowledge you at the least, welcome you to the forum and say have some patience with us, you'll get some responses by the by.

Trish

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446474_tn?1404424777
First, you have way to many health issues that are not related to HCV and liver disease that I can not comment on. Only your doctor(s) can understand the true nature of all of your medical conditions. So I won’t comment on any of them.

You say your doctors have never explained your liver disease to you. Liver disease is very complicated. It takes many months if not years to have an understanding of everything involved in decompensated cirrhosis/End-Stage Liver Disease and a liver transplant. At the transplant center they should have provided basic education to all listed transplant patients. Also the hepatologist must have a Nurse Practioner (NP), Social Worker or someone that you can talk to about these questions and concerns. Ask.

What is your MELD score?
Ascites is usually the first complication of decompensated cirrhosis. Do you have varices? Hepatic Encephalopathy? What meds are you taking to manage your cirrhosis? If you are decompensated you most likely are too ill to undergo HCV treatment I’m afraid. That is a decision ONLY your hepatologist can make. They need to weight the risk vs. the benefit. Depending on how damaged your liver is, treatment could cause your liver to fail as mentioned. It that case you will need a donor liver very quickly to continue living.

As far as your "enlarged spleen"…that is a common complication of cirrhosis and is nothing to be concerned about as there is nothing that can be done about it and all cirrhotics live with it. It is what causes your platelet count to be so low.

“a small focal lesion identified in the liver” It is too small to know what it is. That is why they will continue to monitor it. “What does the reading mean?” Exactly that.  

You say you have no one to take care of you. Who is your primary caregiver? Most transplant centers require someone to speak for you if you are not able to speak for yourself. Most patients are in and out of comas before transplant and have no idea where they are sometimes who their wife, husband, children are. No one can go through a transplant alone. Period. You won’t survive. So start planning now. Also you will need someone to care for you after you leave the hospital. To count your meds, take you to appointments etc. At my transplant center you will not get listed if you don’t have a primary care person because they will not give a precious liver to someone who has so little chance of survival.

“Lastly, do any of you think I will make it through hcv treatment without going into liver failure?  
How high should my platelets be if I start treatment?
Do you think I will make it through the transplant with out dying from all of the illnesses I have, and the ones that can be reactivated?  
Do you think I will survive a year after the transplant on anti-rejection drugs when they re-activate all the dormant illnesses?  
How much time do you think I have? “

To ask these questions indicated you need to learn more about your liver disease.
No one can predict the future especially based on one post on the Internet. Only your doctor and the supporting staff at the transplant center know what the true facts of your health is. Everything that you posted that the doctor at the transplant center said is correct from my point of view. So I would trust his/her judgment. They know more than you, me or anyone on this forum. You should be asking the transplant center what is your diagnosis and prognosis. In the meantime educate yourself about liver disease and transplant so you can make the best choices available to you when decisions need to be made.

Good luck.
Hector

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250701_tn?1320978365
wow you got a lot going on girl. I have had pain in my groin and the front of my left leg, also have had the swelling in legs an ankles. I will be doing my 6th shot tonight. God bless you an I hope everything goes well for you.
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419309_tn?1326506891
With all that you have to deal with, the best specialist for you is indeed a liver specialist, or hepatologist, at a Transplantation Center.  Your hep c and hemochromatosis are a double whammy and are most likely the contributing factors in you having cirrhosis and steatosis -- the thrombo and poly are not unusual in the setting of cirrhosis, they are fairly frequent complications that come along with progressing cirrhosis.  The important thing now is not how you got hep c or or whether your chances are 10% or 30% for getting rid of the virus, but that you have a doctor who can assist you in doing so and provide you the appropriate safety net.

The fact that you are asking questions is good.  There are lots of helpful folks here, but keep in mind no one here is a professional or expert, and certainly the best person to ask all these questions specific to you is your doctor, who has your history. Hector is right, there's a lot to understanding liver disease, and we'll certainly try to help where we can, but certainly what we talk of is 'generalities', and every person is different.

Some things that you DON'T need to be concerned about, though, is the positive results for cytomegalovirus, rubella and varicella... it just means you were *exposed* at some point to CMV, rubella (vaccination would make you positive) and varicella (aka chicken pox!)... nothing to be concerned about at all.  I know nothing about the Epstein Barr virus, though, so can't comment on that. As far as WPW syndrome and associated complications, you should certainly be seeing a cardiologist regularly, at minimum.  

Fluid retention in the limbs is also a symptom of cirrhosis (called edema), and with possible ascites, definitely a good idea to keep salt intake to a minimum... always a good idea for someone with cirrhosis.  Oh, and ascites can come and go, it's not a constant.  Not sure what the lump situation could be, but itchiness is also something that can come along with cirrhosis, especially if you have elevated bilirubin.  Cirrhosis can also reduce the amount of calcium and calcium absorption in the body, so that may be the "bone deterioration" you mentioned.

As far as the lesion is concerned, it's important to follow that closely with 3 month imaging at regular intervals.  Unfortunately the technology currently available is not very good at diagnosing masses in the liver, and often times it's a "watch and wait" approach.  The fact that your AFP is 15.8 is encouraging, means no big red flag for malignancy... hopefully your lesion is benign, as most liver lesions are, but very important to keep a close eye it.

Most people who are treating their hcv do not have cirrhosis, and have better responses as a rule, and can often rid their hcv with 24 weeks of treatment; however, with cirrhosis, the odds at stake are huge, and with success rates somewhat lower, doing the 48 weeks is generally considered the wiser choice to get the best result possible.

No one can tell you how long between cirrhosis and liver failure...there are so many variables... some people live for years, a decade or more with cirrhosis without going into liver failure... everyone is different.  The important goal is to NEVER find out.  Educating yourself about what it means to have cirrhosis and what you can do to reduce stress on your liver will be your best ally; take the opportunity if you have the option to treat and get rid of this virus... and, because you have cirrhosis, it's important to be linked into the Transplantation system and to be familiar with what that entails, just in case you run into the need for TP sooner rather than later.  Hope that helps some, and welcome to the forum.
~eureka
PS... NO iron, NO alcohol, get rid of salt, read labels for sodium content, stay away from red meat, and keep fat to a minimum.  Eat frequent, small meals, get lots of exercise, and think positive!
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163305_tn?1333672171
I see you're in Arizona.
Is it possible for you to go to Mayo clinic in Scottsdale?
I think they may be more able to help you.
Obviously, you need someone more qualified than who is treating you now.
Good luck
OH
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Avatar_m_tn
Sorry if I'm wrong but something about your post just doesn't seem right. You have to understand that for a person to list that many things wrong with them just seems like a hoax. I'm not sure anyone could have that many ailments.
What ever you got going on good luck.
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Avatar_m_tn
I hate it, but what copyman said. jm
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Avatar_f_tn
Thank you, Trish, and thank you for reading my post.  I know it's a lot, but it all came barreling out after holding it in for so long.  I'm pretty good at that, and this is my first time ever talking to anyone.  My mother is nice, but she is 82, and just the minor things are too much for her.  Telling her everything would be too difficult.
I've been away from the site and checked my emails just now, and there was one from Med Help stating I had seven responses.  You are right.  People did respond. Thank you again for your warm welcome and kind words.
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Avatar_f_tn
Thank you for your reply.  I do have a lot of health problems, and I wish more than anything else that I didn't.  It is good to know tha
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Avatar_f_tn
Thank you to all of you who answered.  I never expected this many responses.  I wish to answer each one of you individually, and will do so tomorrow.  I just wrote a lengthy post to Hector, and just before I sent it, I picked the best answer and the whole thing disappeared.  I'm afraid I'm not very computer literate yet.  I will answer each one of you tomorrow.
My biggest thank you is to Eureka254.  You are a kind, generous person, and although I cried after reading Hector's post, yours on the other hand gave me hope, and put me back on track where I need to be.  Thank you for your honesty and your ability to explain the answers to me in a positive way that I can understand.  I don't know who you are or what you do, but your family, friends and loved ones must be very proud of you, and proud to know you.  Thank you very much.
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Avatar_f_tn
Although I have a lot of ailments, I know I'm not alone.  It wasn't too awful as the ailments didn't get me all at once.  I would have been a basket case if they had.  I remember about 15 years ago I asked a doctor if the TB I had as a child at age 4 could have caused a lot of these illnesses.  He said no, but it was a good thought.  I've never asked another doctor since.  
I still don't know why I have all of these illnesses and ailments.  I'm only grateful when they don't flare up.  Most people tend to shy away from someone who is not in the best of health, so I've always kept my health problems to myself, and my husbands disabling spinal injury 23 years ago also left me with very little time to think of myself and my illnesses no matter how I felt physically. When I was younger in my 30's and 40's, it was easier for me to handle an illness than it is now.  Thinking back, I was always so busy I took them all in stride. I listened to the doctors, took their instruction, and went about with my life taking care of my husband and daughter. Though there were times when it was hard for my husband and I, we did what we had to do.  We relied on one another and took what the other had to offer, and our belief in God, and that he does not give you more than you can handle has pulled us through a lot of the hard times.  Some days are not so good as I'm finding out now as I get older, and I'm human so I do have a moment when I say why me.  At age 54, almost 55, I do talk to God and tell him I can't handle anymore, and then I think of how I am luckier than most.  I have an income, I have a roof over my head, my daughter is still healthy and that is all I can ask for.  I see children in Pakistan surviving barefoot in their flooded streets with no home, shoes, food, and I ask myself......how can God give me more than what he has given me when so many people need his help, and I have so much more than them?  Then I don't think about my ailments and I'm good for awhile. It helps.
I promise you, there are people like me out here with many illnesses.  We just don't talk about them.  There's no point.  I accept your apology, and your good luck wishes.  Thank you for answering and for reading my post.
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