You are a inspiration!

Hello from California!

I just want to say you all are a huge inspiration. I love how so many here collaborate to help each other! When I started reading here a few years ago, I had no support, I was alone except for this page. Thank you! I have let some friends know of my condition now and am getting help from clinic.

I am 49 and have stage 4 cirrhosis. I have not drank alcohol in 4 years. I eat clean (need to excersise more) and live pretty healthy. I am trying to stick around for my 11 year old daughter and 14 year old son a little longer. They are my life and don't know about my condition. I don't have the heart to lay this on them.

I have been diagnosed with hepatic Encephalopathy and don't eat much meat because of it. I take vitamin d because of deficiencies and testosterone. I am severely fatigued and can't think straight a lot of the time. My memory is terrible and I forget what I am doing a lot. I am surprised I still have my job.

I am wondering if anyone knows of any natural remedies or has heard of Black Cumin? I read some very positive things about it. Ncbi website US National library of medicine says it helps protect the liver but doesn't go into reverse of liver damage.

Thank you for anything.

Mike

17 Replies

oldestnewest
  • Hi, your welcome. It's always good to hear from people from other country's. As for exercise a consultant advised me to buy a bicycle, I cheated and brought an electric one..lol

  • Your a funny one 😂

    My exsersise consist of showering.

    I told my doctor I try to go to them gym but my HE makes me forget where I'm going and I end up at ice cream store 😳

  • Ice cream!. See you soon, just getting my bike out...lol

  • Hello Mike in California, from the borders of Wales and England! In my search for further dietary advice I came across Antony William Medical Medium Life Changing Foods.(purchased on Amazon). I love this book!

  • Oh my gosh! It looks great. I'm going to order a copy now. Thank you.

  • I did my best at following a 28 day detox which involved eating little and often, mostly lovely colourful fruits,veggies, and herbs, but I also ate some meat (avoided pork), fish, found dairy alternatives like almond milk, ate local organic honey when craving sweet stuff or dates or apricots...just keep sugar at arms length..it feeds the virus..

    For me, so far, so good...Hep C found Nov 2nd, have had ultrasound and fibroscan, genotype and viral load..and my meds due to start in March. Feel ready now!

    Re your kids..take my hat off to you!

  • I had Hep C for most my life and didn't know until it damaged my liver enough to create symptoms. I did the pills (cant remember which ones) a couple years ago. Took viral loads to zero within a few weeks. I have been getting better ever since.

  • You will do excellent in the new Epclusa drug my friend!

  • Hi Mike, I really don't know how your hiding H.E from your children as majority of the time I didn't know what day it was.. And of course I can understand your reluctance but children are not daft and will pick up on something if they haven't already.

    Food what's best is all fresh and no salt and plenty of water as for exercise I just walked when I could I wouldn't of been safe attempting anything else, my friends suggested swimming but I probably would off forgot what that was whilst I was doing it lol

    As for remedies consultant's in UK suggest none of them and I always had to double check if I was attempting to take something which they hadn't prescribed, we forget the liver has to process it and if it's not working how is it supposed to do that, it's why H.E gets progressively worse as medication we are given to help it just stops working as well due to liver function.

    Are you not waiting for a transplant? Excuse my ignorance but I not aware of medical system in America regarding liver disease...

  • Thank you JoJo. My kids have had a hard time at their moms. I share custody 50/50. Maybe they know, maybe they don't but just didn't want to drop anything else on them. I have to let them feel like I am there for them and I have been as much as possible.

    I have been able to cook and drive without accidents mostly. Besides burnt toast and some over cooked eggs, I have been ok.

    Over here we have a waiting list. If your liver is performing bad enough and you cannot function with the one you have, u get on the list. Mine has not been bad enough. My doctor said my blood work is better than hers is But only time will tell if I get better. I hope I hold steady/ heal/ get better.

    My doctor told me she knew a women that went from a stage 4 to a stage 2. After she finished hep c treatment. From what I have read and heard the liver can reguvinate itself.

    I hope I am one of those cases. And I hope many others here have the same outcome.

  • It is an amazing organ!!! And thanks for filling me in on American system, it's basically the same as ours apart from our wonderful NHS.

    Am glad your not in need of one, and is it hep c why you have liver disease?

    H.E does effect us all differently at certain stages so am happy to hear you can function on a daily basis, I couldn't be left alone the last 2 years before my transplant I was a nightmare haha we should all definitely write a book of our experiences whilst having H.E I personally would be giggling, I still do at mine.

    And regarding your children if they do or don't know I am sure when they are ready or need to know they will ask you x

    Do you yourself have family /friends support?

  • Hey JoJo,

    Yes, had Hep c and didn't know for most my life, we think I contracted during surgery when I was a baby.

    So this conversation prompted me to ask the kids if they noticed anything about me that has been different. My son said last year I was much more short tempered. Can't say this has been the easiest thing to go through alone. I do have a girlfriend now (doesn't live near me right now)

    I do feel so much better than I use too. Not sure if my liver is getting better or if it's from Testosterone supplement. But enjoying where I am right now regardless. Today will only come once.

  • Hi Mike,

    We are delighted that you have found the site so supportive.

    You may find some of The British Liver Trust publications useful to read, here is the link to our patient guides;

    britishlivertrust.org.uk/pu...

    Regarding you question on natural therpaies; The British Liver Trust does not recommend the use of homeopathic or herbal remedies for those with any liver problems as these have to be processed by the liver and can actually damage the liver and lead to severe illness.

    More research needs to be done on the use and safety of such remedies and therapies.

    If you have concerns about any prescribed medication or are considering using complementary or alternative remedies &/or therapies always discuss this with your doctor.

    It may also be a good idea to obtain specific dietary advice from your own doctors.

    We hope that is helpful,

    Warm wishes,

    Rebecca

  • Thank you for the response Rebecca.

    I love how medications have advanced and help cure disease. I also look forward to the day when we put profit aside and do research on less expensive and less evasive natural treatments. Big pharma drives the direction our medical care goes and I think there needs to be a better balance in the medical industry.

    I am taking the Black Cumin oil. Luckily this is one natural herb that has had research done and it has great liver protective qualities. My doctor know doubt through her vary narrow studies of American medicine would say don't take it. We only know what we choose to learn. I try to keep a open mind and do lots of research before making medical decisions.

    I don't expect you to change your view on this but thought I should share my perspective.

    Thank you for your care of people. Sometimes that care is the only thing keeping us going.

  • Thanks for your response. It is your choice what you decide to take. We just always advise that you discuss matters with your medical team.

    Thanks for your kind words about us, we really do care and try our best to help!

    Take care,

    Rebecca

  • Hi Mike another from USA! You sound similar to.me! Oct. Iwas advised get on liver transplant. I needed to think about it. Are you on the list? How long have they suggested it may take? What if anything dod you have to do to qualify for.the transplant list? I see Dr's again early to mid April and will advise put me on the list! I don't feel sick, thats whats strange...I did a year ago have the fatigue and almost.no Iron so on 3 pills a day for.that. weird thinking and not knowings what to expect on the loney road a head. Keep well friend.

  • Aww I'm sorry to here this are you on the waiting list for transplant I'm I'm new to all this they are still trying to find out what's wrong with me up have said autoimmune disease I to feel alone right now has I can't talk to my husband he thinks it all in my mind I myself will be looking for natural remedies to help me but do not have a clue where to start sending lots of love your way marie xx

You may also like...