You must be feeling very stunned, and a bit in shock, I imagine. I am so sorry that you had to recieve this bad news.
We have Hector on here, who can guide you thru the process, and many other wonderful members on here, that have been thru what you are about to embark on, in terms of Treating your liver disease.
Either before or after a Liver Transplant, a person generally has to also Treat their Hep C, as it comes back, after a transplant, as well.
it is a good thing your Doctor is making you an appt with The Transplant Center. There will be Hepatologist there, who can guide you thru this most
difficult process. Remember, there is hope, and to remain strong.
This does explain why you have been having immune problems within
the last 5 yrs. It sounds like you are in good hands, and have your ducks lined up. You'll be in my prayers~ Katy
Of course your scared but take a deep breath and relax, first your doctor is doing the right thing by sending you there. I was DX this way back in early 2005 and yes it scared the crap out of me. People can live along time being cirrhotic. After going thru all the test by Hepa decided to start me on tx but at that time success rates for people with cirrhosis and geno 1's were very low. I treated for 86 weeks and then relapsed, thanks to the new PI's we now have a much better odds. I treated with VIC and now I'm cured though still cirrhotic and plan on being around along time now with out having a TP.
Souds like your in good hands now, things will work out. Wishing you the best.
I know this is scary, but look how much you've done to advocate for yourself and your health in the past few weeks. You have found out more about your Hep C and most importantly you now know the exact stage of your liver disease. Additionally you have the appt set up and the referral set up for the transplant center and a good hepatologist who will be able to assess your portal hypertension as well as look for other possible complications of your liver disease. You have done so much in just a few weeks! Many people have stage 4-Cirrhosis, so you are not alone. My husband has stage 4-Cirrhosis, he has tried and failed all available treatments for his Hep C, so we are in a watchful waiting stage, watching to catch any complications early and treat them, and waiting for another Hep C treatment to become available to him. My husband's Cirrhosis is less advanced than yours, and he is a little older than you are. As Hector told you in your first thread, the condition of your liver is serious and needs the care of a hepatologist in a transplant center as he/she is the best equipped to evaluate your situation and provide the best medical care. That doesn't mean that your liver is going to fail tomorrow or that you're going to need a transplant tomorrow, it means that you need a hepatologist in a transplant center to evaluate you and prescribe the proper medications and treatments for your particular situation right now and monitor you for possible other complications so that he/she can prevent them and treat them if they occur. These possible complications can be life threatening, so that's why you need this type of specialist to care for you now. So, hang in there, you're doing a great job. As I mentioned in your first thread, it might be helpful to contact either Hector or Orphaned Hawk to ask them to help you develop a list of questions to ask your new hepatologist. It may also be helpful to take a trusted friend or family member to your appointment so that he/she can take notes and help you remember. Your hepatologist may prescribe some new medications to treat your particular symptoms, he/she may also order some additional tests, and he/she may have some special directions about diet to help prevent ascites and other complications. Your hepatologist may also evaluate your case and give you a MELD score, basically a score stating how your liver is functioning. The lower the score, the better your liver is functioning, and the higher the score means your liver is functioning poorly. I will wait for someone with more experience to chime in here, but based on your complications, I believe that your liver is decompensated, which means your liver is not functioning well. This is due to the degree of scarring on your liver and the resulting changes in the structure of your liver. When is your appointment with the hepatologist at the transplant center?
and nodular regeneration, with liver cirrhosis). Histological grading of iron store is normal (score 0/4+).
"No wonder he is making me an appointment with the transplant center."
I am sorry to hear you received a diagnosis of cirrhosis. It is pretty shocking to hear this news so realize this is a phase you must go through and deal with as best as you can. It can be very scary and overwhelming as it is not something any of ever think will happen to them.
Your doctor is doing the right thing for you. A liver transplant center has hepatologists that work on a daily basis with folks like us with cirrhosis. They have the resources to evaluate the current state of your health and provide all of the monitoring and treatment you will need. As can-do said, you can have compensated cirrhosis for many years without the symptoms and complications of decompensated cirrhosis. Ascites, hepatitc encephalopathy, bleeding varices etc, The transplant center will help you to stay as healthy as possible for as long as possible. Meanwhile they will provide you with the best treatment options that are available to someone with the amount of liver disease.
Cirrhosis covers a huge range of illness from those who feel totally healthy and have no portal hypertension (no enlarged liver, regenerative nodules in liver, no varices) to those who's liver is failing and are close to death and need a transplant soon. You are nearer to the early stage stage of cirrhosis. Your liver is still able to perform all of its functions but you have bridging fibrosis and nodular regeneration which is classic compensated cirrhosis.
Picture a hexagon shaped lobule. Fibrosis beginning at each corner of the hexagon....
Later, if the fibrosis also forms between those corners -- (like connect the dots) -- that's "bridging fibrosis".
As more time goes by... (if the inflammation continues).... more and more bridging fibrosis forms. (Fibrosis around the portal tracts, fibrosis bridging across the liver lobule, fibrosis more or less "encircling" the lobule...)
As more time goes by--- Liver cells may begin to die ("necrosis")...
Scar tissue begins to form ("cirrhosis").
Do you have any blood results of platelet count, bilirubin, PT/INR and creatinine?
Remember you still may have time to treat your hepatitis C which is the cause of your cirrhosis. As long as you are still compensated you can try treatment. Remember you probably have a long way to go before ever needing a liver transplant. Probably many years. Depending on the results of an upcoming trial on patients with cirrhosis there may be a new interferon-free treatment for those with cirrhosis of the liver. So there is more hope than ever for cirrhotics. I have had cirrhosis since at least 2007 and was a previous null-responder to interferon based treatment. I am now in a trial with GS-7977 + ribavirin and become undetectable within two weeks and so far, week 6 have had no side-effects, no low platelet count (the treatment has no impact on platelet count) and no anemia. There will be a phase II 40 person trial for cirrhotics coming up soon and if that is successful a phase III trial with many more patients.
"GS-7977 and Ribavirin in Patients With Chronic HCV With Cirrhosis and Portal Hypertension With or Without Liver Decompensation"
ClinicalTrials.gov Identifier: NCT01687257
This is a multicenter, Open-Label, Randomized Study to Investigate the Safety and Efficacy of GS-7977 and Ribavirin Administered for 24 weeks in Patients Infected with Chronic HCV with Cirrhosis and Portal Hypertension with or without Liver Decompensation. Approximately 50 subjects (25 per group) will be randomized (1:1) to either receive study drug for 24 weeks or take part in an untreated observational arm for the first 24 weeks followed by study drug for another 24 weeks.
Aurora, Colorado, United States
Boston, Massachusetts, United States
Rochester, Minnesota, United States
Philadelphia, Pennsylvania, United States
Hang in there. As you learn more about cirrhosis you will see it not the end. There are many things you can do to maximize your health before ever needing a transplant.
Thank you for the explanations, I am angry with my GP at this stage as I had been complaining of symptoms for two years and he never followed up. BUT, that is neither here nor there at this point, I have to deal with what I know. I do have more results from blood tests, just haven't posted. I should hear from transplant center this week or next as to when I will go for evaluation. So, when the doctor said it was OK to wait until January to start treatment as liver disease is slow moving was a correct statement? As many infections as I've had (IV Vancomycin 3X in the last year) I have it in my head I will probably be dead from an infection within a year, low platelets, low WBC, etc., but maybe I'm feeling sorry for myself. Anyway, onward and upward to a new torturous path of evaluation and treatment.
Thank you for your words, transplant center sometime this month, haven't received the appointment time yet. Strange the doctor didn't give me these results in his office, just that I was very fibrotic and it would be best to go to the transplant center and get to know them. Just a strange, non-pushy way to present to me without alarming me I guess. It took three phone calls to get this report. He kept sending me endoscopy, colonoscopy and CBC results.....