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lost


Hi, i have just found out that my mum has Hepatitus C, i have tried reading stuff on the web about it but im really scared and i dont know how this is gonna affect her and our family, she is currently undergoing the "pegasus thing", i feel like my world is falling apart and i have no one to talk to about it, i dont know whether she is gonna die because of this, she has changed so much with reagrd to her weight, her moods and behaviour patterns and i am so lost in all of this, what can i do to help her, how can i get more info on the facts, is this disease fatal
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Avatar universal
Che, The treatment is very hard on the person and I'm sure even harder for family members to watch.  It will all be over soon enough and hopefully she will clear the virus.  This disease can be fatal in some cases but it sounds like your mum is on top of things and doing everything right to be cured.  This site will give you loads of information on hep c.  Good Luck to you!
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223152 tn?1346978371
Honey is right.  This treatment is hard.  However, it can be done.  It would be helpful if you would pitch in to help your mum in any way you can.  Especially with house cleaning and shopping.  We tend to become anemic on treatment and short of breath.  Shopping and house cleaning, or anything requiring a lot of energy is hard.  Please don't expect your mom to host family events or watch grandchildren if it can be avoided.

She is doing the right thing - trying to clear this virus to be healthier over all.  Many have done it successfully.  Check this forum and other websites and become informed on the disease and the treatment.
frijole
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Avatar universal
thanks for the advice
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Avatar universal
its just really hard in all aspects, the treatmeant is very hard on everyone and expensive to, the mediacl aid is not paying the entire bill and my parents are really stressed out financially as well, i feel better now chatting with u guys, i dont feel alone any more and i still believe that god is still in control
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233616 tn?1312787196
not always fatal, some gentypes are 90 percent curable, some are 50 percent, but something gets us all in the end yes? Anyway, it's not an automatic "get your affairs in order" so that's encouraging.

here's my advice, as a mom:

I've also witnessed people come back after chemo when they were given 2 percent chance of it working, so every body is different, and there's no reason to give up hope. Even if she doesn't clear the virus now, there are better drugs on the horizon, and chances are she's probably had the virus 20-40 years before being diagnosed so she could survive long enough for better drugs if these don't work.
that's what I tell myself every day. I'm kind of glad my daughter and son are grown, out of the house and don't have to witness my daily stuggle, but it's hard on my husband, and I'm sure it's hard on you!

But nothing tests the beauty of our love for one another like a life struggle. this could be the best time with you and your mom, not the worst. It will be the worst if you get scared or angry and start blaming her for putting you through it though. You will have to work on your own responses to achieve this continued love and bonding, and it is work.

First, accept it is happening. Meanwhile, be as supportive as you can. It's not like you are waking up with the flu every day, she is.
All I want from my kids is a little understanding, a chance to go to a movie or spend a little time with them, once or twice a month, and their promise they won't do drugs, get tatoos, or engage in sex with the 50 million carriers out there that don't know they are carriers...(joke, but not really).

It's hard on the caregivers too, but believe me, any mother would much rather care for someone than have to be so needy themselves.

Fear won't help you though, because plenty of people come through this disease and worse ones so you have to try to be strong and pray she'll be one of them. You owe her that much; all the time you spend worrying just adds to strain in the relationship,and is bound to affect your mood as well as hers.

So, try to look at what could go right, not wrong, and Meanwhile, do whatever you can to lighten the load.
I have days where just going to the bathroom and back to bed causes major pain. this is partly because of the stage I reached before diagnosis, and partly because there a great war going on in my liver that the drugs are aiding in now, thank goodness, so the good guys in our blood can kill the bad guys.
Interferon is what she is on, that;s one our body makes naturally to fight illness, but you know how you feel when you are coming down with the flu?? Well, It can feel like a hornets nest has taken residence in our tummy, which is good in that, that's where the bady boys are hanging out. Its gang warfare!!

So, just like you would want someone to bring you a cup of water, a cool rag, or some warm broth, do what she needs whenever you can help, put yourself in her shoes.
Most of all keep your chin up, don't go into denial. It helps no one, least of all you.
And don't think that because she's OK one day, the next will be the same. I've gone from planting 100 flowers one week to not being able to even sit up most days, and hopefully I'll go back to flowers when I'm done kicking butt on this virus!!!!!

One of the worse parts of my day is when my loved ones stand and watch me go through a painful hour like they are scared and helpless. That's because their worry only adds to the sorrow and zaps the positive "one minute at a time" thing we are trying to do. So distract yourself from those times, however you must, because there's nothing worse than a doting helpless face hovering over you to make you want to burst out in tears. Sick animals tend to isolate to sleep or face their pain. Maybe that's part of what's natural. It's just near impossible to shore everyone else up when you are the one in all the pain. So while we want some help, aide, and really, I just need a gopher at this point because the getting up and down can be gruesome, most of us don't want people to over react to everything. Keeping our mental balance and peace takes effort, sabotaged when those around us can't stay in their's.
So:
We need to stay in a place of peace. We need loved ones who will help us do that by controling their own thoughts and hence emotional responses,
If you believe in the Lord God,  as I do, I suggest you start trying to really trust Him with your mom's health and eternity. just as you will one day have to surrender yourself to that same process.
It's most scary when you don't have any faith or trust in a merciful Savior or a hereafter.
I would rather have my faith, and be sick, than to not know and trust Him, and be well.

If you do have some trust, then maybe now is when it is being put to the test.
Thank God you are not on the other side of this equation! It's like comparing an SAT test to a 5 minute quiz.
And so, as they say in the army, buck up soldier. What you want in the end is to know you tried your best to love. And don't be scared by mood swings, every baby gets cranky when they are sick wet or teething. This is far beyond any of those conditions so some crankiness is to be expected.
remember mom still loved you when she walked the floor with you all night for months on end, and years of boo-boos and childhood ills didn't stop her from doing what needed doing.
Nor should it stop you now.

I have one suggestion that may be better for you at this point than reading all the scary stuff on here as you put it.

If you familiarize yourself with the four stages of grief it may help you. All illnesses, as well as death force us to go through these stages, so recognizing them in yourself, and your mom will help you work through it, and understand what she is up against.

Hope that helps. How old are you?
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Avatar universal
I will pray for your mother. I am a hepatitis survivor of 22 years.  the treatment is difficult as others have told you, yet I believe it is worth it, it is that chance to be cured and not suffering with many of the symptoms which are caused for many people with HCV.  While on treatment, keep an eye out  for  your mums status of  mental wellness and  watch for  depression, have your mum see thedoctor at all scheduled visits. If you see the depression in your mum, please treat it serious= and see the doctor with your mum, as this will give her the support that she needs,.and remember I know in my heart that your mum knows how much you love her , as i feel it in your ability to reach out for her ,and with her,:. this will help her deal. with  everything so much better. Remember to look after yourself, caretakers often forget the importance of nurturing themselves, take time for yourself each day. God Bless You ashemjora
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Avatar universal
it means alot to me that u took the time to encourage and enlighten me, im 20 years old and very immature, i guess thats why this is taking a toll on me, cause its forcing me to be mature but as u said, its not about me and i should be there for my mum, she is a fighter and i can see how much she is trying to pretend to be normal, sometimes i hear her crying in the middle of the night, i stay awake until i know she is asleep, my heart feels sore at times and i sincerely wish that i could take her place so that she could be healthy and happy, my mum is 37 and she is very strong but she is so depressed sometimes and i feel like im not doing enough. i love god and trust him but my life is not perfect and i feel like i have not been as good as i should have been, i feel distanced from him. what u said about taking the load of her regarding chores, makes sense, she does seem weak at times, very healthy and radiant on certain days and on other days sick, i understand that better now and will try my best to be more supportive, she is currently in hospital and has been bleeding as a side affect to her medication, the doctors say that it is not a good sign, it has stopped now, also u are right when u say that i should accept reality, i havent done that yet, i feel im dreaming, i just want to wake up and find everything to just be a lie because i cant bear to see my mum suffer
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Avatar universal
i see the depression all the time, i find her crying or looking sad and worried, the doctors have advised us that her stress levels need to be low, she is in hospital currently because she is highly stressed, i have not been very supportive and i acted like everything was normal but after i visited the site,i now realise the seriousness of her condition and i am trying my best to be there for her.
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233616 tn?1312787196
being 37 is really in her favor, odds go up for cure the younger you are,
everyone needs a good cry once in a while, but if this bevomes chronic, this is what they make meds for. Antidepressant are made for times like this, and can make a real difference. You say mum, so I'm assuming maybe english or aussie, but in this country if you het too depressed of talk of offing yourself they will stop treatment, so it's imperative she get help if she needs it. there are some antidepressant that don't harm the liver.
Also, there are pain meds, I get one of two bad episodes that really take my courage. I take a 50 mg tramadol for these times. too many elevated liver enymes but a couple are fine. Works much better than tylenol. doesn't itch, constipate or interfere with appetite much, so better than all the opiate type stuff. with Ribivarin you itch, so you don't needs other meds that add to that.
they can also give Ativan, like a mild valium, once or twice a week may sooth her worst private moments, but be careful there of dependancy.
hope this helps, good for you for admitting. None of this is easy at any age. I keep thinking what the youth went through to stop Hutler and other medmen, and this encourages me to be strong. Others have endured far worse, although it's not the fill comfort the Lord gives, it helps to keep in perspective that we are not alone, and very blessed to be in countries where treatment and cures are possible when most of the world has no such advantages.
Keep us posted. It's better to encourage your mother to get help with her suffering.
No one argues when a soldier gets a body part blown off, should we give him some morphine to ease this, it's obvious that's the right course. Somehow when pain is internal and cannot be seen...there's no bloody bones and flesh sticking out, we tend to think this is not as valid a cause.
But this has nothing to do with recreational use. this is valid relief of real conditions which can put enormous pressure on our brain to produce natural encheplins and endorphins (the body's morphine). what the body makes natural to fight pain is 100 time stronger than morphine, made in minute amounts, just enough to control most pain. daily taxing of the system wears out this ability and then the more pain a person tries to endure the more the pain itself exasserbates the condition, the pain, the heart, and the mental attitude. Ergo, there's a time to say uncle and I need help.

If she's having brief spells of crying each night that's one thing, but if she's moaning for a hour or more at a time, or constantly rubbing and holding the area, it's time for some help.
also the time of night you take your second dose of ribavirin can effect your sleep. Better she take it several hours before bed.

also good idea to ask how she is sleeping. A mild sleep aide like Ambien may give her enough aditional deep sleep to be better rested and this will lead to less pain and depression, and the reverse is also true. non-quality sleep makes everything much worse.

also see my thread today, KnNOW THIS is could save your life.
glad to help. Just paying it forward. You are brave for 20, and it's good to express your needs and get some solace.
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Avatar universal
im asian and i live in south africa (durban). do u also have hep c?, u seem so positive and amazingly strong, when i read the stuff that u right it inspires me more than words could explain, i see a women of substance, i cant imagine how someone that has so much pain in their own  life emotionally can be able to pose as an anchor for another. thank u for helping me understand, i truly hope that god grants u all of your heart desires and i hope that your family realises your worth, how come u dont have a profile so that i can chat to u on a one to one basis, do u have an email address,
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233616 tn?1312787196
thank you so very much for those kind words.  Mum in S, Africa, makes sense.Yes its hard, but everyone has hard times, I lost both parents before your ago, so that tends to frow you up. I've also had to help my own children deal with my illness, and prepare themselves....and I'm blessed that I volunteer with at risk youth, who all have severe family problems and illnesses. So perhaps the Lord drew me here to answer you.
South Africa has so much promise and sadness all wrapped together. I can't imagine how the younf there cope so well with the amount of Hep and HIV.  
I'll be happy to do a profile etc. for you. Only been here a handful of times so far, since I was only diagnosed in June/July. Give me a day or so.

One thing more for you sweetie. I'll bet mum is as worried about you and whether you'll be alright as about her d isease. Try to be stroung and show her you'kk be alright. We all worry about our babies, that never goes away where there is love.
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