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 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
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!