If you are sure, then return it to the drug store unopenned. Or call you doctor's office and ask them what to do. If you aren't sure, then put the interferon in the fridge and decide what you want to do. This isn't about whether government agencies are mad at you or not. Do what is right for you.
Jody,,,if you are bipolar, you need to discuss this with your dr. I would think if you tried it,,,you could be monitored closely to see if if all is ok.
Don't sweat the Medicaid thing really none of us cares about that. I don't think there are many of us that actually pay retail fro our tx.....
but be sure and talk to your care providers.
Jody - hon...
Make sure you're not going through a manic or depressed phase set on by worry or stress (and let me tell you... actually going to get the meds is a HUGE stressor)
Your doctor would not have prescribed the TX for you if he didn't think he could help you through the whole treatment.
Here's a very good suggestion for you.
Make an appointment for a hospice.
Advise them that You are trying to make the hardest decision of your life in whether to treat with INF/RIB or just let nature take it's course.
Ask them if they can show you patients in END STAGE LIVER DISEASE. I don't know if they will... But it is an idea that I had that might help you prepare for what CAN happen to you.
Or look online --- find information about what happens to people as this disease progresses.
Now - realize the advancements of medicine. OK?
Now.... Knowing your doctor knows you... and knows that you're going through the anxiety, depression and manic phases... I feel fairly confident that you can effectively treat this disease.
The Side effects aren't ALWAYS that bad... In everyone... OK?
Those of us here on the board... We like to share our miseries... THAT DOES NOT MEAN IT IS GOING TO HAPPEN TO YOU.
If we can handle what we went through - so can you.
There are a lot of HCV individuals on this board who have Bi-Polar problems... OK?
And just so you know -- NO ONE is going to get mad or dissapointed in you. ONLY YOU can make yourself feel bad about this. Not us.
We support your decision.
We can only offer our insight - our laughter - our truths and our information and experience.
Much hope for you JodyLynn
It sounds like you may have made the decision to treat a little too hasty and now you're making the decision not to treat, also a little too hasty.
Since you've already ordered the medications, why don't you put the medications in a safe place and make a proper decision whether to treat or not based on a little more knowledge, and perhaps more input from your doctors, including your psychiatrist or psychologist who is treating you for bi-polar.
If you don't know already, you should find out what genotype you are and what stage liver damage you have. Making the treatment decision is complex and personal, but knowing these two things will help guide you.
In addition, try and do some more reading, both here and at other web sites, to learn more about both the disease itself and the treatment process.
If you're like most of us, you've probably had Hepatitis C for many years, so a few more weeks (or months) probably isn't going to make much difference. The important thing is that you make the decision that is right for you.
Treatment makes sense for some more than others. Your job now is to find out how much sense it makes for you. So for now, try and keep your options open.
All the best,
Well said! JodyLynn you owe no one anything except to yourself... the tx can be a bit tough but totatlly doable. I've thought just prepping to do it is harder than actually doing it from a psyche point of view. There are lots of meds that can assist you getting through and don't know how far you are down the road but I'm still bettin' that living is better than the alternative. It's not forever and you may be a very rapid responder (RVR) and knock it out in less than 6 months but it's not as hard as you hear us talking about sometimes but know this that we're here to help you too if you do decide that you're going to do it. That's why I picked my moniker to indicate that we are hopeful that we will beat this thing. Having a group to do it with makes it easier as you know that there are many kindred spirits and you will find that some days you will be doing pretty good and find that you want to encourage others too, who knows? Either way, do what's in your heart and have faith that all will be well as it will. Plus you can come here and get some good laughs as we truly do have some 'sit down commedians' here like I-Horn that will make you split your guts and have a good time while we do this thing together. YOU ARE NOT ALONE... we got your back.
You can do it. I did it four times. Unfortunately, I'm one of the very hard to clear subjects, but I will be doing my fifth treatment with VX-950 in January.
Yeah - what hope said --- We gotcher back!
What Meki, JmJm and FullofHope said was right on target. There are many who are txing who do not suffer sx. On this site...we hear the worst...but we also hear wonderful sometimes funnystories with happy endings. Especially the letters "SVR" and "UND". Talk more with your doctors..put the injections in the fridge when/if you pick 'em up. I know people who experienced little or no sx, really! This forum, especially when you first come on, can be overwhelming. Try to get a good night's rest..things usually are a lil better in the morning. G'night JodyLynn and God Bless! You are in my prayers.
We were all very nervous before tx. We all know how you feel. But not everyone has the bad side effects. Tx was very easy for me. I felt down and out now and then, but it was very similiar to how you feel from your menses, thats all. I think what Jim told you is good advice - hold onto the meds, others have also. Then you can speak to you doctors and if they feel you need to treat, you can study more about treatment and begin when you feel ready. Jody, no one even knew I was going through treatment. I am going thru menopause, so if I mentioned I felt down, they just thought it was that, which part of it probably was/is. There have been others who have gone through treatment who are bi-polar. One of the menbers is just about finished. She did 72 weeks.
Remember that there are alot of people who feel fine during treatment and alot of times they don't come to the forum as much.. we see more of the people who are having side effects - cause they are the ones who have the questions. I thought I was going to be holding onto the walls and pueking in the toilet 24/7 on tx after reading alot of the posts, but the majority of people don't go thru that.
I agree with Jim that you should hold onto your meds and think things thru and talk to your doctors about your concerns.
We all had terrible anxiety before tx and yet we all made it thru. You might have an easy time just as I did. I bet you'll do just fine. Wish you the best.
Hi just wanted to say Myown is right . I have 4 more wks left and have had few sx. even my dr. said i'd feel like cr@p . i was und at 4wks . I rarely post but thought it may help if you here from some of us that are getting thru tx. easier than others. That we all don't have a terrible time. take it one day at a time in whatever you decide. Take care & try not to stress.
BOWS down to Magnum.
Wow - freaking WOW!!!
Super good luck!
I think Jim has hit it opretty much spot on.
A couple additions:
I would porobably call the pharmacy and tell them I have a few isssues to clear up before I start treatment, and can I still pick up the drugs and maintain covereage at a later date. If they say OK - then I'd let them restock - that should lighten you emotional load for a whail. If, for some reason the meds needs to be picked up, I'd get them and put them in the frisdge unopened. THe ribavirin pills you already have don't need to be refrigerated.
Things to consider in deciding to treat:
- How much liver damage do you have?
- What is the likelyhood it will work for you (based on genotype, age, weightr, race, sex, etc)?
- Will you likely have a more difficult time than most?
Take your time and take a breath. This is all OK. Really.
Hey Jody :)
My Step Father has Bi Polar so I am a little aware of some of the difficulties you face already without the added burden of having Hep C.
The sx of the drugs he has to take are powerful enough on their own so it is a real concern just from the medical POV whether you could manage tx let alone emotionally or physically.
My ex also has Hep C and he had a stroke at 36 years old ( he is now 45 ) and he suffers all sorts of mood swings, epilepsy, depression and mania etc etc. He is also on a myriad of drugs and suffers from the sx of those drugs.
Of the two of them I am pretty sure that my step father could handle tx as long as he had the strong support of my mother and his extended family AND constant monitoring by his health professionals. Not only his hepatologist but his mental health professionals as well.
( my step father does not suffer hep c but I am using him to hypothesize )
IF you have the support of family and your doctors then I think you should be ok -
I do not for one moment think it will be a walk in the park for you but I am quietly confident you could do it :D
I would also take advantage of any support group you could find that would not judge you and could offer the help you deserve.
My advice to my ex has always been to wait until the tx regime improves considerably if he can. I do not believe he would be able to handle the SOC TX as it is today.
I really wish you all the luck in the world and I feel for you - I know it must be very scary and confusing.
As you can see tho - there are many at this site that can and do offer real support and very good advice :D
First of all, thank you all for your support.... you all are so kind. I have genotype 1 and they think ive had it since my teens, i dont ever drink or do drugs, but i did try drugs when i was a teen, it just dont seem fair to me all the people i know that never stopped drugs are fine, i stopped at 18 and i have the hep c. If i have had it all these years the doctor says i have very little damage for having it that long, but ya know they dont know where i got this or how long ive had it, what if i got it from a dentist and not had it that long and its already showing up on my Liver Biopsy? How do i really know? And as far as the 2 doctors ive gone too so far, these men dont know me they say chances are treatment will not help me. To be honest they could really care less. Im just going on what they say that ive had it over 30 years and if i have very little damage, and maybe at my age (49) i shouldnt take the treatments. And as far as my family goes, one of my sisters said we cant take off our jobs to come take care of you if the treaments make you sick, she said we would rather have you a few years not sick then to have you sick for a year and it not do any good anyway. I live alone my husband left me 4 years ago so this is really hard on me. Just thinking of this for the last year ive known ive had it is killing me inside. For the last few years ive been so tired, now that i know i have hep c i know why, but my sister says oh its all in your head. No one knows what i feel like and the pain ive been in and whats sad is no one really cares. Maybe ill do what yall say get the drugs and hold on to them and think about this a few more days. Thanks for yalls help, its nice to know i can come here and talk about this because i sure cant with my family or friends.
We all know what it feels like.
We all haven't had your horrible situation - you need much more support than what you've got available to you.
Check and see if there is a support group for HepC in your area.
Don't panic sweetie --- life is just beginning for you at your age... 50 is the new 20.
So hang on to your hat --- and stop thinking the world is going to end right now... Cause with your situation - that's what I would be thinking --- so you're not nuts or ANYTHING like that - ok?
Just take one day at a time.
Who knows what will happen tomorrow.
If you can't take the treatment - then don't.
But your family doesn't sound so lovely ---- rather have you for a few years sigh... well then --- that about measures up what THEY are WORTH...
Not YOUR Worth... Theirs.
Keep thinking about tomorrow for YOU!
Don't let the downs affect you --- think positively... BELIEVE IN YOURSELF --- and everything else will follow.
Try it for a bit --- BELIEVE IN YOURSELF... even if you feel like that's a lie --- force yourself to believe that you are OK...
Cause you are.
And right now --- you're terrified... and you know what?
99.9% of us were terrified, shaking in our knickers. But the only thing you can do is PLOW on through the day...
Watch the sunset --- and see the colors for the first time.. Pretend you were blind --- open your eyes --- and imagine the world all over again as if you had never seen it.
See it for the beauty it has in it... And sweetie - that includes YOU!
One day - one minute - one second at a time...
Who knows --- maybe you're one of "THEM" the non side effect people... LOL - I have dirty names for them because I'm jealous (not really --- but yanno... I so wish I could have been side effect free... BUT THERE ARE PEOPLE WHO ARE... and YOU ---- Yes... You... step right up to the plate --- YOU could be one of them!)
If you're going to do this --- you have to want to live.
Choose your path - and walk it.. It's your dirt road. OK?
Hugs - and no worries - you're very welcome here.
Ask your doctor what STAGE liver damage you have. If you have stage 1 or 2, waiting on newer/better/shorter treatments is a very reasonable option.
It also sounds like you don't have a lot of confidence in your doctors, or in at least the way they communicate with you. So if insurance and logistics allow, consider seeing another doctor you may click better with. The best doctors to see for hepatitis C are called hepatologists. They have more training in matters Hepatitis C than an ordinary gastroenterologist as well as more experience.
As far as your fatigue goes, don't jump to the conclusion that it's being caused by Hep C. It may or may not be, but fatigue is probably the number one complaint doctors hear, even in the non Hep C population.
Also keep in mind that this is a discussion group where most of the people have already decided to treat the virus. For that reason it tends to be pro-treatment. Not everyone needs to treat and not everyone needs to treat right now. Take your time and find the decision that is right for you and that will be the right one.
On a personal note, I made the decision to treat five years ago because I had significant liver damage (stage 3). It then took me three years to actually get started, after a lot of mind wrangling. I treated for 54 weeks and am now SVR (cured) for over one year.
I believe I made the correct decision because I was only one stage away from cirrhosis. That said, treatment and recovery from treatment was the hardest experience of my life and I still feel the two-year hole it left in my life. This is not to say that treatment will be as bad for you, but it is not a decision to be taken lightly.
Deciding to treat or not is not a test of your character. It's not a matter of whether or not you have what it takes, because most of us do when it gets down to the wire. Treatment is about whether or not the rewards outweigh the risks. It's a decision that should be rooted in calm and logic and never rushed.
As always thats good advice and experiance talkin there... All I can add is .. I gonna be scared shitless too when I start my 48 weeks. But I am going to do it and hang tough as I can. You are reading way too much in to this ! Thousands more people are tx. right this moment ( many with no sides at all) That are not on a computer or, here in this forum. Why not set your own start date, then if your sides are so bad then stop. But not trying you will not know you were one with minor, or no sx.
. We here for ya if you need us, Hopefully you'll cruise right threw it . Aloha, R.
As to catching it when you were a teen...
The same thing happened to me. I experimented only a couple of times when I was young. Never did drugs again but I got HcV. You are not alone. Life is not fair but you can beat this thing.
Your sister is being selfish. She basically told you she'd rather you die early than have you be sick for a little while. That is messed up!
Honestly, when I was treating, I would have rather been alone than have a bunch of people telling me what they thought was best. Being alone during treatment is a plus as far as I'm concerned as long as you have somebody you can pick up the phone and call when you're down.
Again, you can do it, Jody. Believe that you can and you will succeed. We are here for you.
You can do anything that you believe you can do. Get your head straight and decide that you are determined to kill the hcv. Then and only then will you conquer the disease. Get tough. Get mad. Fight back!
I have complete faith in you. You can complete treatment. You can do it!
I know you have been scared, and if I remember correctly, when all the bad stuff about tx was posted by abbas, you said "that's it I'm not doing this" (Sorry if I have you confused with someone else)
There have been others here who are bipolar and have txed. It's difficult, I'm sure, but the important thing is to figure out if you have to treat now or can wait.
Will Medicaid pay for a biopsy? I think a biopsy will help you make an informed decision. If you have had a relatively undamaged liver, there's time to wait.
I was stage 1 grade 2 and could have waited according to my dr's. I got my meds in Sept but didn't start tx till Dec. I just kept waiting for the right time.
I went into tx thinking that if I couldn't handle it I would quit. I quit 8 weeks early, but I'm a geno 2 and so far am clear 3 months after tx. My sides were really minimal, but I felt that I was clear, and I wanted to quit.
You could try the same reasoning. Hold onto the meds, try to get a biospy, and if it looks as if you want to tx you can give it a try. As Jim said, it's not about strength or character, it's about making a decision you can live with.
Good luck sweetie, we're all here for you.
jodylynn, you do indeed have real concerns BUT you can beat this damnable virus...like jim said yu gotta get a doc you can trust(or at least a GREAT nurse)...figure out a financial/social support PLAN and get your head inna Great place...It ain't easy,but it can be done..you may need helper drugs for anxiety -so what? this is a battle & it can ultimately prove your mettle...View it as a challenge that is ultimate!..cause it is...Focus on yourself&your health...BE SELFISH:YOU are Worth it!!!...KICK BUTT and GOODLUCK.......and if yu don't trx...please don't beat yourself up..life is tuff enough already
Let me say I wish you well and understand your fear. However alot of things are going to happen to people in their life for which they have NO CONTROL OVER> hcv is something YOU can control and help get rid of this virus. Many people have gotten rid of it! And the ones that didint get rid of it will on the 2nd or 3rd try around with tx. If you can help yourself...then try to kill this virus. I dont like to say much about tx cause I wont be starting till end of this year. But I sure want it gone!! I will br treating I dont like the idea either of putting my life to a dead healult for a year either. But as you grow older you realize we have no other just. We musthelp ourselves. Isnt it better being diagnosed with something you have a chance at beating??? Some illnesses out there there are NO CURE>
Try to sit down with someone and discuss your options. Do you have liver damage?
It'll be okay..Anticipation sucks!