Hep C for over 25 years, maybe a lot longer

[Psychodelia]

I was diagnosed with Hep C when I gave blood at the blood bank some 25 years ago. Who knows how much longer I have really had it. I am so sick of the stigma attached to it, as though anyone who has it is a junkie. Even if you are, or regardless of how you got it, you still have to deal with it.

I investigated treatment some 12 years ago and was told by my very knowledgeable GP when I was living in another city that she advised against treatment, being as it was so harsh and my liver function was pretty good.

Recently, I blew up from under the breasts down, didn't put weight on anywhere else, looked like a barrel on legs. Fainted in the street last week and taken to hospital where they seem to think the faint had nothing to do with my other problems. They drained 8 LITRES of fluid from my body - leaving about 2 litres of fluid which I am supposed to get rid of with diuretics. Also given 3 bottles of albumin. I keep thinking of 4 x 2 litre cartons of milk and that I had that much fluid removed. Lost 5 kgs in one day. The pain in my back, no doubt caused by all that weight, has been much alleviated.

Was told by the dietician that they wanted me to "open my bowels" (an expression I hate) twice a day. Hey body, even though you've only gone once a day all my life, I now command you to shit twice daily! On massive doses of laxatives which hardly work - I've only been once in 3 days and not really urinating much either. Was told that the procedure may have to be repeated in maybe 3 weeks, maybe a year, maybe 10 years, they couldn't say.

I've since found out the treatment has been revolutionised and there is an extremely good chance of clearing the Hep C from my body. When the clinics resume in the new year I will be right onto it.

In the meantime, I am terrified if I don't void that I will end up massively bloated again. Feel terribly tired all the time, and just want to sleep. So scared and depressed!

[Cara78]

Hi, I have had this virus for 18 years and ireally think it's time for me to give up the fight. I'm tired all the time. I'm depressed, I'm fat n I'm only 39 should be alot healthier. You must have got a real fright when your legs swelled up. We can beat this. I have accepted that I am a guinea pig in the grand scheme of things and they're could be long term affects from treatment but I can't go on like this cuz my quality of life is poor anyway. I'm sick and tired of being exactly that.

[Psychodelia in reply to Cara78]

HiCara78,

You are only 39, plenty of life in you yet my dear! So don't give up. By the way, it was my belly that blew up, not my legs, some unlucky people have both belly (ascites) and legs and feet (edema) blow up. It was horrible and I was so ignorant of liver disease. Most people I talk to are the same - lots of people had thought I had just gotten fat - although I never put on weight like that - all stacked around the middle - no-one mentioned ascites or anything to me.

Have you looked into treatment yet? I go next month and will be taking those pills PRONTO - there's a 90% + chance of clearing the virus. I very much advise you to do the same if you have not done so - and if you clear the virus (extremely good chance) then you will feel much better and your depression and fatigue will be much better too.

Best of luck to you!

[Cara78 in reply to Psychodelia]

Hi 😄your damn right I'm taking the meds I'm starting my treatment on 29th Jan. They are giving me maviret for 8 weeks. I'm gony embrace it.

[Psychodelia in reply to Cara78]

You go girl! Best of luck! We can do it!

[Hidden]

I always feel tiered and since treatment I feel even worse felt like stopping half way throw I had to arrange for school to pick my kids up and take them school that’s how bad I got slept all night but 10 min after getting up felt like I had not been asleep at all now week 11 I on my last week of treatment and feel grate was told my blood is clear of hep c at week 4 wish you a whole lot of luck with treats d it deos work so just keep going it’s all worth it in the end I went yellow week 2 looked like I just been dug up and yellow went after 5:6 days after drinking plenty of water and good luck

[Cara78 in reply to Hidden]

Amazing and welldone😊that's some effort on your part with the kids too.....your on your way now! Congrats😉I can't wait to get this out the way...... MERRY CHRISTMAS 🤶🎅😉

[Hidden in reply to Cara78]

Hi how did your treatment go

[Psychodelia in reply to Hidden]

Shellwalsh83 I have my first appointment next month - the liver nurse assures me that after having it so long a little bit longer won't hurt, and she also told me my body needed time to heal after my faint and ascites drain. I am very hopeful of clearing the Hep C - my liver will still be in a bad way, but no more damage being done to it.

[Cara78]

Hi😄I'm starting treatment on 29 th January. They are putting me on mavyret for 8 weeks! How r u?

[Hidden in reply to Cara78]

Feel terrible wish I never started treatment should of just took my chances with hcv

Since finishing treatment all I do it sit and cry just can not seem to snap out of it xx

[Cara78 in reply to Hidden]

Try 5- htp and cod liver oil tablets for low moods. I hope u start to feel better soon, my thoughts are with you. ☺it's very lonely when you feel down, take care😇

[oncesunny in reply to Hidden]

So sorry to hear it sounds like the drug made you depressed. I suffer with depression now before treatment.I have had hep C for prob 30 yrs and have the first box of meds sent to me( Harvoni) but I'm supposed to see the GI nurse first before I start taking these.Unft after visiting the dentist yesterday I need oral surgery so I will prob have to wait until my mouth heals before starting treatment.This last yr I have become so I'll from osteoarthritis and it hurts to stand for the shortest amt of time let alone walking and the fatigue is terrible so I am scared to start this new treatment.Did u have depression issues prior to your treatment? Could u share your experience on the new meds u took pls? All the best to You!!

[Hidden in reply to oncesunny]

Hi sally ally I was in 3 different tablets I was in ribavirin/ exviera and viekirax was on them for 12 week I was fine for first 2 week then started to go yellow that only lasted about 5/6 days I drunk plenty of water the worst part for me was been very tiered all the time and the sickness that lasted up to week 7 and just went then was fine right up to the last day of treatment and then about 4 days after then I felt so low all I did was sit n cry I have never suffered with any kind of depression I’m now 4 week after treatment and am starting to feel my self I did fine out from blood results at week 2 that the virus was not detected so the treatment is very good and affected do you no whot treatment you will be taking or whot type you got x

[oncesunny in reply to Hidden]

Sorry it's taken me so long to see this response back to me..Was told to start Harvoni and I can still do oral surgery( yippie ugh) anyway almost halfway through and side effects aren't bad ( headaches off & on) but I still have this fatigue, OA ,and trouble stranding for any length of time so I'm late in getting my first labs since starting. It's my fatigue! Anyway will try to do it in the next couple days..Good luck to you!

[Debbiedoos in reply to Hidden]

Oh hun I totally relate it's terrible isnt it . It's like your in front of a glass window and screaming for help but people just walk on by.

Isolation in your own head you tell people but it's like DID I JUST SPEEK Becouse No one is listening to me........

I'm do glad I found this forum though reading others has help me to see I'm not alone and you all feel the same .

I told the liver nures it's like you are trying to fit into a normal world but your mot normal...

Sound horrible but what I am trying to say under the influence if ribavirin 🤣

Is ...expecting to fit into a daily normality going to work doing house work( or not ) becouse you can't get out of bed

It dosnt work I was told I can still work and do normal things

Yah right no way when you push yourself the nexed day you can't get out of bed .

I wished I'd never started this treatment...and that's sad becouse I'm hcv undetected

I should be over the moon on cloud 9 but I'm not .

I do have faith under it all I go in and out of depression I don't take anything for it

I did in the past befor hcv and it was worse for me not saying it is for somone else .

I try to think of happy things

Iv 2 lovely dogs and I have to be there for them as much as they are there for me silly as it sounds I can't wait to get home to be with them.

I admire anyone who have children to take care of or a sicker love one .

Keep strong like us all.

Bless you xxxx

[Ttansformer in reply to Hidden]

I know how you feel I'm 6weeks past epclusa treatment waiting for final results, I feel so exhausted.and tired edema in legs and stomach numb fingers I just hope these symptoms go away I hope yours did ! I really feel like I never started it as I felt pretty ok considering I'm in 60s and have led a full life ,I wasn't going to do it but.liver Dr I spoke to had me signed up after 5min visit some how he made it sound so easy

.hope your feeling.bit better .

[Psychodelia in reply to Cara78]

Hi Cara78,

Good for you in starting treatment soon! I start next month. Feeling pretty good at the moment, thank you.

[Hidden in reply to Cara78]

Good luck

[Jean1968]

Hope all goes great for you I try to come on n say things but end up deleting it but I feel so alone and scared OMG youres is so unreal to be real I hope n pray for you take care n stay strong xx

[Psychodelia in reply to Jean1968]

Dear Jean1968,

Thanks for your kind words. Please don't delete your posts - people out there are in the same situation, all scared, we need to support each other. It can be a very isolating illness so I hope you have at least one good friend you can confide in. Yes, I intend to stay strong, many thanks for your prayers, please accept mine for you too! Be as educated about the illness as you can be, without scaring the crap out of yourself reading too much bad news on the internet, meditate or use some other method to help you relax, and eat a good healthy diet with lots of fruit and vegies - even a raw veggie and fruit juice cleanse for a few days is great. Be kind to yourself.

[oncesunny in reply to Jean1968]

The worse for me is writing a long msg to then have my phone die at 15% before I hit submit reply

[oncesunny in reply to oncesunny]

Also since I use my phone to reply and all the typos I have to fix it's too much for my tired soul, anyway one day when I have energy I will rewrite all that I lost on this topic .Good luck to everyone whether they do treatment or not! Also shout out to those who r lonely and depressed( as am I). May we all feel less alone & better! 😘

[Debbiedoos in reply to oncesunny]

I totally agree omg I thaught it was just me hehe....I think we all understand what were saying bless you x

[Hidden in reply to oncesunny]

This page is grate to just ask questions and talk to people in the same boat as you this page helped me a lot as no one knew about my virus so found this page and all the people very helpful x

[Hidden]

Omg I so glad I read your post since I finished treatment I look about 5/6 pregnant I done loads of test and they all say no it’s driving me mad how long have you been like that and did it start after treatment I so wish I just took my chances with hcv and refused treatment I was grate befor now after all I do is sit and cry I feel

Terrible but on a good note blood tests was clear of hcv on week 2

[Psychodelia in reply to Hidden]

Hi Shellwalsh83,

Thank you for your reply. I am so sorry you have been so ill and upset, but I think you did the right thing having the treatment. I go in next month and will be starting ASAP on Hep C treatment, I do not want this vile disease in my body a moment longer than I have already.

Honestly, your liver does not need the stress of this illness. I do not know why your belly is so big - have you been checked for ascites? You have been cleared of Hep C - but if you have a build up of ascites you may well still need the fluid drained. Then hopefully you will be able to maintain this with a good wholesome diet, and your liver will not be getting damaged any more from HCV!

Luckily for me since I was 'tapped' when I went to hospital and drained of 8 litres fluid, I have managed to keep fluid levels in my tummy right down with complete avoidance of alcohol, low salt diet, lots of fresh juices and fruit and vegies, and turmeric drinks (golden milk with ginger, cinnamon, ntmeg and black pepper). I weigh myself every day and closely monitor my belly for signs of fluid build up and my weight has stabilised to probably my ideal weight.

I am feeling a lot more hopeful than I was when I got out of hospital a month ago today, although I still get very fatigued and sometimes quite depressed.

Best of luck with your health - Health is Wealth!

[Hidden in reply to Psychodelia]

Thank you I have made a docters appointment and will ask to be checked for this thank you so much and wish you the best of look x

[Debbiedoos in reply to Hidden]

Hi hun

I get this to and my legs and my right foot.

I think its normal for hcv suffers and the liver response

not to worry you my nurse said if it is liquid it's not a good thing. But is it just bloating?.

I take lactaloose I was told by a emergency Dr when I first started treatment to take it every day to keep the Bowles from building up CONSTIPATION it's painful to .

Google lactulose and it will say that it removes the ammonia in the blood of patient's who have liver disease.

Not for diabetics though

Don't quote me though ask you Dr or liver nurse.

Iv suffered from constipation for years anyway I'm also suffering from arthritis

But I understand hepatitis can cause a form of rheumatoid in its self.

As well as ribavirin

Iv been studying my condition and reading lots that may help me just to understand what it's all about.

Take care x

[bunnyroo]

7 weeks in my Hep C treatment was stopped due to toxicity aggravating my damaged liver. Aside from an odd day or so, here and there, my nausea was back, very jaundiced, just generally feeling ill again. Then i woke one day with a sensation of fullness/heavyness in my stomach, feeling even more unwell. Went back to hospital, more tests(having them each fortnight anyway) found very low albumen and other things i can't recall this time of night. Showed them my legs which had ballooned from feet to hips, so uncomfortable and unsightly. Saw Consultant again. He put me on two diuretics, Furosemide 40mg and Spironolactone 100mg, after which i need more regular blood tests as it depletes electrolytes. Then, nearly two weeks in, saw Consultant again as i suddenly started with backache - something I've never, ever suffered from. I was having a good day, went walking. Suddenly had to stop as lower back pain was intense and it was murder getting back to the car, had to stop every couple of mins. Soon as i sat in car, it moved to my upper/middle back. It was worse. Wouldn't go. Neither standing, sitting, lying any which way, stretching or anything either lessened or stopped it. Back to hospital after talking to nurse. Saw Consultant AGAIN. He prescribed codeine to try or let them know if i need stronger painkillers. Said when it's hurting, lie down, don't walk. They are doing a bone scan and more blood tests next week. Does any of this resonate with you, Psychodelia? If so, what tests, etc, are you having? Feel like I'm falling to pieces. This is way beyond what i thought would hapoen by accepting treatment for Hep C! Apparently I'm Hep C free AND not on treatment. Yet it's still one thing after another. Consultant said they are all connected......just grand 🙄 Anyway do hope you feel better soon. It is very easy to let the fear take over. I've been there and still have my moments. Thought i understood most of what is happening to me but this all makes me feel i haven't scratched the surface! Good Luck 🍀 to you.