Discussion Topic

New to all this

Posted on 04/06/08, 11:42 am

My 26 year old daughter was just diagnosed with type 1a. We have been doing alot of reading on all types of boards like this as well as CDC and hcadvocate. I don't mind telling you all, I am as scared as she is. She had no risk factors (other than being in the Army where she was given the hepB shots). She has never been around drugs, tattoos or had piercings, nor has she been involved with anyone with those risk factors. We believe that this came from the hospital where she gave birth to her son in January. She already had severe depression before this and don't know if that will be a factor in her tx. She also has 3 kids. Besides the infant, she has a 3 and 4 year old. My husband and I will be moving in with her in order to help but we are not sure how to help. I believe in education and holistic meds. She is in the acute stage and is having joint pain, nausea, fatigue, irritability and worse depression because she can no longer take the meds that were effective. I am learning alot but I want to know how I can best help her to live with and deal with this disease while caring for 3 small kids.
Thanks.

Showing 1 - 10 of 12 Replies

Reply #1 04/10/08 11:50pm

tasmoe

You're doing it right now. You are asking questions and trying to get an insight to this disease.
There is no doubt in my mind that you won't support her thru this. I believe in my deepest of hearts that support and love is half the battle.
When she does the treatment, she may do ok and then again, she may have sides that make her very ill.
She is going to need you, no matter what. Living with this disease is hard.
Not only does the disease change the person that has it...it changes all the people around them too. It's an entirely different world and you have to make the adjustments.
When I bowled with my aunt...the very first tournament we bowled in together she told me,"The lanes don't adjust to you. You adjust to the lanes."
Little did I know how true she was. Especially with this disease. I have to adjust to the virus.
I don't give it control...but I do listen to my body.
Good luck with your daughter. Get her over here if she is willing. If not, just know that you are not alone and she isn't either.
Tasmoe
Reply #2 04/11/08 12:11am

daggma

Thank you so much for the support. We are taking it one day at a time right now. It seems that getting her to a dr. to even discuss treatment is going to take months. I am as frustrated as she is by the lack of answers we are getting so far. It's hard to be proactive when you just have to sit and wait. I want to yell at someone but I wouldn't even know where to begin.
Reply #3 04/11/08 1:01am

tasmoe

There are stages you go thru. I'll tell you what I went thru.
When I was dx'd with hepc...I didn't even have a clue what it was. The doctor just told me that I was going to die within 3 years if I didn't do the treatment. That was in '98.
Needless to say, I was freaking out. Scared. Then I was introduced to the stigma of hepc. So, not only was I scared to death...I was having to deal with the stigma and the way people ran the other direction. Alot of my family did too.
I found a hepc site where I could get loads of info and was welcomed with open arms. That made me know that I was not alone and the only person in the world with hepc. Relief at last.
Read and listened to people on the internet. That's called taking control of the disease and not letting it take control of me.
Then the decision was rather or not to do the treatment. Back to the confusion and fear. It took me until '01 to decide to try it. Also with that choice, I decided that if I was going to go thru the treatment...I was damn sure gonna beat it.
Did the treatment. It kicked my ass. Back to the confusion and fear.
I am a nonresponder. Here is the stage that I hope your daughter doesn't have to experience.
It is a constant fear.
My father has cirrohsis(sp) of the liver because he drank a great deal.
What he has is a 'condition'...what I have is a 'disease'. There is a big difference.
Do you see what I'm getting at? I always go around the block a dozen times before I pull into the driveway.
I admire you a great deal for making this attempt to learn more about this disease to help your daughter.
She's a very lucky person.
Love and hugs,
Tasmoe
Reply #4 04/11/08 9:30am

daggma

Part of my problem with this is that we have learned that the best time to "beat" this is while it is still in the acute stage but we can't get her seen in the remaining time frame. It is our understanding that the acute stage only lasts for about 6 months. Once it passes that time it becomes chronic and has an even lower chance. I just don't understand why the medical community wouldn't want to jump start the treatment while it is still early. I am not a doctor, but it would seem to me if you only have one chance to kill the sucker, you would at least want to try.

As far as her being lucky, Its me thats lucky. I have been blessed with a fantastic daughter. She has been the light of my life since the day she was born. Not to say that she isn't stubborn and ornery, but she is the best daughter anyone could ask for. I need to keep her healthy and strong for me as much as for her.

I am sorry to hear that you are a non-responder. It sounds like a lot of hell to go through and nothing to show for it. But it has brought you and your insights to me at a time when I really need it. So thank god for you and thank you too.
Reply #5 04/11/08 8:49pm

scgirl27

I am 28 and i was just dx as well. I know what she is going thru, it is all a shock right now and i know it is for her as well. I feel like i was deceived somehow and i just can't figure out how i have gotten this. However the research i have done is promising. Young people in the acute phases stand a better chancce of treatment working and also curing itself without treatment. However i am going to start treatment next week because i don't want to give it a chance to get worse. The best thing she can do is talk to others who have it like myself and go thru it with others and not isolate herself from others. Advice and support will help. It is helping me have a better outlook and i am sure it will help her as well. Just knowing that I am not the only one going through this and that there are survivors and people who beat this encourages me to stay positive.
Reply #6 04/11/08 10:37pm

mmaryflanagan

So my friend was diagnosed yesterday and told not to do anything but watch it for six months. Is that crazy? I am all new to this thing and want to help but I'm not sure how to do it.
Any suggestions?
Reply #7 04/12/08 3:35pm

tkaren

Be careful of trying others "remedies". eg/ milk thistle - deadly for some Hep C patients, depending on what stage they are in. NEVER take anything over the counter unless you've gotten the ok from your DR., he knows the results of all your blood tests and can advise what is safe or not, even the simplest thing can do harm. Any topical cream (eg/A535) anything that goes on your skin for pain, arthritis, etc., is then absorbed thru your liver. There is a book that my Dr. gave me, don't know if the states gives it out but ask for it.

Hepatitis C - Everything You Need to Know by Jenny Heathcote, MD

I hope this helps and if you have any questions, please don't hesitate to ask!
smiles,
karen
Reply #8 04/12/08 10:59pm

scgirl27

Ya know i was just dx as well and i could not just sit tight and hope that it goes away on its own, i would rather take the tx and try to garuntee myself to be rid of it. My doc even told me that it is usually pretty rare to catch it in the acute phases which makes a good opportunity to do the tx because you won't have to take it as long and you have a better chance at getting rid of it for good. so i wouldn't sit around and see what it is going to do i would ask for tx for your own peace of mind, i hear the tx is horrible but this is the rest of your life you are fighting for.
Reply #9 05/27/08 11:41am

mlkcpa62

My boyfriend has been going through treatment since Nov 2007, he had to
stop for a few weeks because of his hemoglobin, the side effects have
numerous, itching, weight loss, tired, but can not sleep and extreme
irritability. I try not to take his bad moods personal, but after a
while it wears on you. Any suggestions!
Reply #10 05/27/08 12:13pm

scgirl27

im on my first month of tx and i have moodiness, the doc gave me some anxiety meds and they seem to be working alright so far, im not near as moody. I still have my days tho, just not as frequent. hope this helps