Happy to be here and thanks everyone for sharing all your experiences. I found out 3 years ago that I have hepatitis b, unfortunately my liver numbers started to extremely elevated last 4 months and I got quiet sick, doctors have started me on the anti viral medication 3 weeks ago, I am very scared and anxious, all I think is this virus - I will be taking the medication rest of my life. Anyone taking medication here and how do you stay positive? Is there anything else I can e.g food to eat and avoid? Thankfully I am starting to feel better so the medication is working so far. I am a mother of 2 health girls, part of being scared is to die or get very sick and leave my kids
Hi Vio,
I was diagnosed about 20 years ago and have been on antivirals for about 18 years (first Tenofovir and now entecavir). The only problem I’ve ever had with the antivirals was a change in my kidney values, at which point I changed to entecavir which has never given me any problems. Antivirals, regular doctor checkups, and ultrasounds are a normal part of my life and I’m grateful that they all make it possible for me to live a life feeling totally healthy. Whether or not there is a cure in my lifetime, I expect to live as long as I would if I didn’t have Hep B. I eat a fairly healthy diet but I’m not obsessive about it. It’s a good idea to avoid alcohol. I haven’t disclosed my Hep B to very many people (just family and one friend), and that has been fine. You’re just starting out and it’s understandable that you have fears. Be sure to write again here for support if you need it. My hope for you is that having Hep B will fade to the background in time and you’ll feel ok about it.
Hi, Vio,
Sorry for your REASON for being here but I hope you find the same solace I found in the camaraderie of being with people who, to varying degrees, all share the same ailment as you.
There is lots of information on here to address some of your concerns regarding nutrition etc.
As for being on meds for the rest of your life, think of it as drinking sufficient amounts of water every day to stay hydrated. Give the meds a positive spin.
Once the symptoms go away remember to maintain your healthy diet and avoid fast foods as they are high in trans fats and sodium. No going back, only forward and you WILL feel the positives of eating healthier.
Feel free to reach out whenever you’re having a dark day…people on here have been very caring about everyone else on here.
Chin up, Vio…we’re waking up on the right side of the sod. And life is very precious…too bad it took this virus for so many of us to appreciate it so.
Denny
Hi @Vio,
Welcome to the community. Thanks for sharing your concerns. As others have stated already, it can be scary when someone is about to start treatment and the fact that it might be for life can be scary. Before I started treatment in 2015, I had similar concerns. I was worried about failure to adhere to taking the medicines as ordered and the commitment to do it. But once I started treatment, it felt more normal than I had thought. Think of it as taking the medication for another chronic disease such as high blood pressure, high cholesterol, heart disease, asthma etc. HBV is not much different from those conditions, so think of it as such.
To stay positive, I will say try and have a positive outlook even in bad situations. Take deep breaths and laugh whenever you can. Try not to over burden yourself with this disease and its path. Do the things that make you happy and live your life.
The worst thing some patients do is they isolate or stigmatize themselves from society, which is not healthy and helpful. Stay tune with your body and if you notice any sudden changes bring it up to your provider. These medications are safe, but some patients might react differently to it. I hope this helps. Bansah1.
Hi Vio, welcome. I’m Hep B chronic and on entecavir since 3 months ago. So far I did not have any side effect from that entecavir. I take one tablet daily and I quiting smoking and drink alcohol just to stay healthy.
@elderberryblu this is so very helpful, learning about your journey and experiences with the disease and the medication has given me great hope and encouragement. Thank you so much for sharing, and you are right, being great full that we have treatment. Its a shame hepatitis is not talked about so people like me and millions of others didn’t anything about it until I found that I had it.
@Bansah1 this is really helping to learn about your experience and management of the disease and medication. It’s very hard to be honest but right, worrying about it too much will not help, it is what it is so I have to learn to be positive and looking forward to when this is all over like a faded memory! Thank you for helping to give hope
Denny,
Surely it’s “too bad it took this virus for so many of us to appreciate it so” since I got sick and started meditation I also started reflecting really hard how good life is and how sometimes we forget about it until we get sick thank you for your positive and encouraging message and kind words- that’s all we need right now. Thanks for your thoughts on nutrition, I will check out more resources on in on this forum. I have lost over 10 kgs, I am a small short person so that that’s a lot, I guess a little hope goes a long way! thank you.
I pray for all of us here and keeping everyone in my thoughts and prayers
If you’re losing weight find high protein food stuffs within our dietary restrictions. I had lost all muscle mass and dropped 35 lbs…I have protein shakes with skim milk, Ensure or Boost, and kelp and salmon oil caps, all high in protein. All recommended by my specialist. Resistance training to start and weights later on when feeling better…all helps get the weight back on
Hand in there, Vio.
Denny
Sure, just take it one day at a time. It’s what it is captures it all because we can’t change what has already happened. My favorite thing to say when I feel like I am up against it and it helps as I don’t spend more of my energy worrying about something that I can’t change. But it is what we do about it that matters. I wish you the best and know that we are all here to support you whenever you need it. Keep us posted. Best, Bansah1
so that that’s a lot, I guess a little hope goes a long way! thank you.