Hello everybody. Today is Saturday, February 9th. I had intended on writing earlier to let everyone know the good news, but things have come up and the time just gets away on me.
I went for my FibroScan test on Thursday, January 31st. As you may know, I had been told since about the middle of October, that I had Stage 4 - Cirrhosis. I was told this by my NP at the Clinic where I am being treated for Hep-C. I never had a liver biopsy nor any other tests. I was told this was a "presumed cirrhosis" diagnosis, based on my bloodwork and the length of time I had Hep-C. Right from the moment I was told this, I disagreed totally and I knew I did not have cirrhosis. I tried very hard to convince my NP that she was wrong but she insisted that she was right. I continued to ask about getting some form of confirmation for this. I wanted a liver biopsy or some other test that would either confirm or deny that I had cirrhosis. I was told that a liver biopsy would not be done while I was on treatment. I then found out that there was a new non-invasive test called a FibroScan that was just as accurate, perhaps more so, than a liver biopsy. I insisted that I have one of these. It was very, very difficult to get this done. I waited and waited and was very patient and yet very persistent. I was finally told that I would be given the test in January. I was so relieved. I waited and was then told that perhaps I wouldn't have it done in January. I couldn't take this any longer and was prepared to travel to Toronto and have the test done there and pay for everything myself. I knew I did not have cirrhosis and I needed to prove to everyone.
I was finally told that I would be given the test in Halifax on January 31st at 1 p.m. I can't tell you how happy I was. I was so excited to get this done and to prove to everyone that they were wrong and that my liver was in good shape.....I just knew it and could feel it.
I had the FibroScan test done and as the doctor was doing the test, he said, "That is good." He said, "It is better than I thought." He said the numbers looked really, really good. I knew it....I knew it. My NP was in the room during the test and she saw for herself how great the numbers were. She immediately said she had been wrong and that I did not have anything close to cirrhosis. She said she was changing my file to show my treatment as being only 24 weeks, ending on March 21st. She said she would stop all future ultrasounds that she had booked (to check for liver cancer) as I did not need them. I cried with relief. I knew I was right and I proved it!!!!! My score on the FibroScan was 3.7. This is an unbelievably low score. From what I understand, a score of 7 or less means you have no or insignificant liver fibrosis. Any score from 12.5 and higher means you have liver fibrosis / cirrhosis. My number is 3.7......that means my liver is in excellent shape....no fibrosis at all. Once I am cured of the Hep-C (6 months after my treatment ends) I will be totally fine.
I am the happiest person there could be. You cannot imagine living with the diagnosis of cirrhosis when you truly believe and know you don't have it. I couldn't convince my NP until I had this test. My liver is probably in better shape than most people's!!!!
I am now entering my 19th week of treatment. I continue to have little to no side effects from the drugs (Riba and Interferon). I have lots of energy, feel wonderful, sleep like a baby and I feel as good, if not better, than before I started treatment. I have been Undetected since week 4 of treatment and on week 8 and 12, still Undetected. My next Viral Load test will be when I finish my treatment on March 21st. This will be 24 weeks of treatment and I expect I will still be Undetected. The next Viral Load test will be 6 months after treatment finishes. That would be in October. This will be when they will tell me I am SVR (cured). I expect that to happen.
Anyway, I wanted to let everyone know my absolutely fantastic good news. This is a lesson to all that when you believe in something and nobody will listen, don't give up!!!!! If I hadn't been so persistent and listened to my body and knew myself, I would have had to do 48 weeks of treatment, had ultrasounds every 6 months to look for cancer and all of that worry and life-altering information would have made my life almost unbearable......for what???? For something that wasn't true!!!!!! Stand up for yourself and do not give up when you know you are right.
Thanks so much for reading this blog. I also want to say that I hold no hard feelings regarding the pain and misery I was put through regarding the wrong diagnosis of cirrhosis. I understand that from what my NP was looking at and what she believed, the "presumed cirrhosis" diagnosis made sense. I do understand that. My only problem is that I completely disagreed with this from the beginning and insisted on confirmation. If I hadn't been so persistent and kept this up, I would not be where I am today. I just think that if a medical person believes someone has something as serious as cirrhosis, a definitive diagnosis should be done. We should have done absolutely everything possible to confirm or deny this from the beginning. It is too bad I had to go through this Hell and nightmare for so long. That is my only regret.
I continue with my treatment.....only 5 weeks left!!!!! I see my NP on February 18th and will see how everything is going at that point. I will write another blog when I have more information or any news. So far everything is just wonderful, life is great and I have a very healthy liver......my Hep-C is gone and I know that I will be cured.
Hope everyone is staying inside during this blizzard we are having today.....it is a nice day to cuddle up on the couch with a blanket and watch movies.