Aa
Do you just ever want to scream "Come on!!! Really?" I'm so done with this ****...
Ok, so I need to whine and vent and b*tch. I am so tired of everything. I'm sick of having Hepatitis, sick of doctors not knowing answers, and sick sick sick of being sick! I've been out from work again since right before Thanksgiving, and I am struggling with what to do... I can take another medical leave and still get long term disability through October, but what happens when things get worse? I know that everyone has their own problems, but I'm throwing myself a little pitty party.
I am 27 years old with what could be a great career (RN) but I have been out of work more than I have been there. I am not married, and do not have kids because I don't have time or energy to think about anything other than my health. My AFP is back up to 221, my direct bili is elevated with my urine testing positive for bilirubin. My docs want me to try treatment again (already tried x3) after taking Actos for 3 months, but I told them until I start feeling better and am not tired all the time and having such horrible joint pain, I don't want to start any more drugs.
Why do I feel like no one understands, no one including my doctors is having to live like this. There has got to be more to life. I want to live my life! I just wish I could have a peek at normalcy for one time in my life.
Ok. That's it. I'm done with my little b*tch fest. Hope everyone else is having a great time. Excuse me for my major meltdown, but it comes to that point sometimes. Come On!!!
I am 27 years old with what could be a great career (RN) but I have been out of work more than I have been there. I am not married, and do not have kids because I don't have time or energy to think about anything other than my health. My AFP is back up to 221, my direct bili is elevated with my urine testing positive for bilirubin. My docs want me to try treatment again (already tried x3) after taking Actos for 3 months, but I told them until I start feeling better and am not tired all the time and having such horrible joint pain, I don't want to start any more drugs.
Why do I feel like no one understands, no one including my doctors is having to live like this. There has got to be more to life. I want to live my life! I just wish I could have a peek at normalcy for one time in my life.
Ok. That's it. I'm done with my little b*tch fest. Hope everyone else is having a great time. Excuse me for my major meltdown, but it comes to that point sometimes. Come On!!!
Hi Megan. I threw myself quite a few pity parties while doing tx. This is the place to have them. Everyone understands the nightmare this disease puts you through. I am happy to hear your brother can help you. I will keep you in my prayers. Merlino
Winston Churchill was the prime minister of the UK during WW2 . He invoked the fighting spirit of the British people with speeches like , " we'll fight them ( Nazis) on the beaches , we'll fight them on the streets , we will never surrender" .. then , thank God , the good old USA came and stood next to us and fought like LIONS , and we in the UK will be eternally thankful . The rest is history , so it will be with our Hep C !! .. keep fighting , hope it all works out over there guys ! love from England .
Wow! Your brother being a live donor, your fight, just incredible. At so young :(
I don't know a lot about TP's let alone live ones, just wishing you the best in this, hoping it gets resolved & the new set of eyes finds solutions for you.
best, LL
I don't know a lot about TP's let alone live ones, just wishing you the best in this, hoping it gets resolved & the new set of eyes finds solutions for you.
best, LL
Thanks for responding, sorry it took so long to get back to you. I have tried interferon 3 times- I think the first was in 1999 with just interferon, 2nd in 2002 with interferon and ribaviron, and 2004 with pegalated interferon and riba. I am on the transplant waiting list, and I already have a live donor who has been approved, but they called off surgery. A tumor has never been found, but my AFP had steadily risen to 668 in 6 months. Then, the day after they told me that my brother was a match, they said my AFP had fallen and they weren't sure why so they decided to hold off on transplant. Within the next 6 months, my AFP fell to 81 which is the lowest its been in years. In December it had risen to 221. My doctors are stumped but don't want to transplant yet, but don't know of a medical reason for my AFP to drop, since I have not been on treatment since 2004. So now I am just playing the waiting game. I have several symptoms like excessive fatigue, joint pain, night sweats, liver pain and abdominal bloating. I just wish they would do the transplant and maybe I would feel good enough to do treatment again, plus I heard after transplant the chance of successful treatment is better since I currently have cirrhosis. I am working on finding new doctors, so hopefully a new set of eyes might see something different...
Trinity4, my levels were going down down down. At about 6 months into treatment levels had mysteriously gone up. I was told that treatment was not working but to finish what I had left as it would help my liver anyways...
When I finished those another test was done and the numbers were lower than when they went up. Nurse told me that bad news was that the start date would be moved to the date when the numbers went back down! Thus 72 weeks. Nurse admitted it may have been a lab error, UGH!
Lady Lauri, got your PM and will try to respond tonite.
When I finished those another test was done and the numbers were lower than when they went up. Nurse told me that bad news was that the start date would be moved to the date when the numbers went back down! Thus 72 weeks. Nurse admitted it may have been a lab error, UGH!
Lady Lauri, got your PM and will try to respond tonite.
Ram, no offense taken, is all in fun. Ducati, (my dumb *** thought it was with 2 t's) does make a wheel chair!!! I call them side cars or maybe trikes??? lol The bike in the pic is Jax"s bike on "SONS OF ANARCHY" but it does look alot like my 94 fxrp I just got rid of about a yr. ago. Have never tried BMW's or Ducati's, have always been a HD man. We can talk more if ya like on another thread, someone may get there V/L up if we talk too much personal. (like most of us tho, we don't care, but some yahoo might) fxr rusty
PS- "FXR"- is that your scoot? I rode an FXEF with an after market kicker for years, then switched to sportbikes in my 30's- totalled a BMW R1100S two years ago and Am now only a used-to-be cause I did some spine damage in the wreck and the Docs said another crash and I'll be on wheels alright. Does DUCATI even make a wheelchair?
Sorry if I hurt your feelings, hombre- I was just playin. I can't remember Sh-- these days, either. Honestly-I've gone from seamlessly multi-tasking a dozen things to not having the focus to walk to the bathroom without forgetting why I was heading there. It's exceptionally frustrating, and starting to interfere with my productivity. But, I draw upon self-discipline, give myself permission to chill for a minute, and keep on keepin' on. I figure all this unpleasantness is striking some karmic balance for all the pleasure I so enthusiastically wallowed in in the 70's and 80's. Man, if that's true, I am SO screwed....
Hi Merrybe! I looked at Megans profile before posting, not much there but .....she has tumors on her liver? I didn't see that nor that she could or should be a TP candidate.
Curious which tx's she's (you've) tried Megan?
Curious which tx's she's (you've) tried Megan?
This is the safest place that I know about where you can vent, b*tch scream up a storm or whatever. People are here to help and they most likely know what you feel like or at least almost, what you feel like. I have actually screamed at ppl, some I knew and some I didn't. Only once did it ever feel good for me and that was b/c I told my boss off and had just finally had enough with his dumb a$$ heartless incompassionate attitude. Anyways, a couple of other times was when I yelled at my wife and she's even more soft spoken than I am so that made me feel really bad. One thing about going thru tx is ppl see you and they don't know what you're going thru, even if your HgB has tanked out they are most likely gonna think you're tired and nothing more. I'm sure once you feel better then you will tx, one pointer that I can give you is not to start if your hemoglobin is abnormally low for you. That's just my advice that I'm gonna follow next time. Good Luck and God Bless
it's the place to B...and you've got every right. And seeing that little baby makes me just want to weep for you....and with you.
it's not fair, we all know that....sometimes I fantisize that every NP/Doc should get to sample this..and it's tx...just for a month or 2..please God....
How long have you had this Megan? If you are treating so much was it from birth?
If so, maybe it's time to consider a transplant....yes you'd still have to treat, but at least your liver would't be worn out.
I'm sure its the high AFP that gas them most wanting you to treat again but there's a limit to how many times what isn't working should be retried.
If you got on a list now, you'd be a good candidate and in the meantime we are only 2-4 years from more serious cures. We will know then just how successful teleprevir is, and maybe Sweden will really have a vaccine for the infected that's 99% effective as a recent article suggested. Who knows. In any case, you can't be treating if you want on the TP list, and you can't get a TP with anything more than a couple small tumors. So it's a real tough call. Once you treat so many times, your body can't take much more and the tx itself can cause liver failure.
If I was in your shoes, I think I'd at least talk to a transplant specialist. You want to be done being sick but if 3x treating has not worked what makes them think a 4th time will?
I don't know what factor age plays in determining who gets transplanted but I think those with many years yet to live and give should get them first.
My best to you, whatever you decide. If you need more info on transplants Mike Simon is a good person in here to talk to. Just click on the transplants link on the right side of each forum page, and you'll find him in there.
mb
it's not fair, we all know that....sometimes I fantisize that every NP/Doc should get to sample this..and it's tx...just for a month or 2..please God....
How long have you had this Megan? If you are treating so much was it from birth?
If so, maybe it's time to consider a transplant....yes you'd still have to treat, but at least your liver would't be worn out.
I'm sure its the high AFP that gas them most wanting you to treat again but there's a limit to how many times what isn't working should be retried.
If you got on a list now, you'd be a good candidate and in the meantime we are only 2-4 years from more serious cures. We will know then just how successful teleprevir is, and maybe Sweden will really have a vaccine for the infected that's 99% effective as a recent article suggested. Who knows. In any case, you can't be treating if you want on the TP list, and you can't get a TP with anything more than a couple small tumors. So it's a real tough call. Once you treat so many times, your body can't take much more and the tx itself can cause liver failure.
If I was in your shoes, I think I'd at least talk to a transplant specialist. You want to be done being sick but if 3x treating has not worked what makes them think a 4th time will?
I don't know what factor age plays in determining who gets transplanted but I think those with many years yet to live and give should get them first.
My best to you, whatever you decide. If you need more info on transplants Mike Simon is a good person in here to talk to. Just click on the transplants link on the right side of each forum page, and you'll find him in there.
mb
That was a mouth full!
Forgot Frank J......
As u can see, I posted to Megan that my symptoms weren't going away 'to treat', worried hers won't but agree, Megan, with other issues you have, he is right in clear your head, take the time to decide whats best for you. Being so young, it does seem it's affecting you early in, and getting rid of it is a serious decision for you.
Frank...I'm Pm-ing you. I have some questions for you and keep forgetting since my post tx issues.
Forgot Frank J......
As u can see, I posted to Megan that my symptoms weren't going away 'to treat', worried hers won't but agree, Megan, with other issues you have, he is right in clear your head, take the time to decide whats best for you. Being so young, it does seem it's affecting you early in, and getting rid of it is a serious decision for you.
Frank...I'm Pm-ing you. I have some questions for you and keep forgetting since my post tx issues.
Megan (and lalapple)....Hi girls, I'm not here as much, post tx, back into the world. I try to be some to keep up here with friends and offer support to new ones going thru what this place, all these great one's:) helped me thru.
Wow, thru my time here it's usually us middle agers , or at least 30 ish, that carried this for years, had no idea, drank some, carried on our lifes, than bam, symptoms, dx and on to tx. There's a few here (Nick, others) that suffered young, but it always saddens me to see some so young with these health issues, this disease already hurting you. (so many don't have symptoms until years after contracting Hep) At least most of us 'older' folks got our fun 20's, 30's before suffering.
Anyway, it's a hell of a battle to beat this disease. lalapple (gotta know where that name comes from...laptop/apple? :) your txing and hopefully will be able to put this behind you, with little or no damage to the rest of your life. You have a great attitude BTW. I am curious what made you tx now versus triple therapy, less time coming out soon.
Megan, thats what we're all here for, so vent, b*tch, whine all you need. I did my share and there IS days you want to just crawl off of the Earth! Any of those days I 'gave' myself and knew it would pass, so will your bad days. My worst symptoms, before finally getting the proper dx of Hep, were muscle, joint pain, dibilitationg fatigue. My whole body would ache for days at a time. I'd lie to friends, co-workers, say I'm busy (not knowing I was really sick) and crawl in bed for 2-3 days, aching, fatigued. My point is .....I had Hep over 30 yrs (we think) and I have tx'd and SVR'd and still have some body, muscle trouble so I do believe the years of Hep did some damage. It's very possible that your muscle, joint pain isn't going away UNTIL you rid yourself of Hep. The fatigue, body pain wasn't going away for me to treat 'feeling better' and my concern for you is if that is all your waiting for, it may not happen. You may have to re-think and start tx feeling bad, as I did. If/when you do.....
and this is simply a possibility, no suger coating.....on the tx drugs all that body pain can be intensified, the drugs aggravate it often, so DON'T quit because you think it's going to stay that way, can't take it. It's a side of tx, it will get better.
I wish you both the best in this and high hopes you beat this disease.
LL
Wow, thru my time here it's usually us middle agers , or at least 30 ish, that carried this for years, had no idea, drank some, carried on our lifes, than bam, symptoms, dx and on to tx. There's a few here (Nick, others) that suffered young, but it always saddens me to see some so young with these health issues, this disease already hurting you. (so many don't have symptoms until years after contracting Hep) At least most of us 'older' folks got our fun 20's, 30's before suffering.
Anyway, it's a hell of a battle to beat this disease. lalapple (gotta know where that name comes from...laptop/apple? :) your txing and hopefully will be able to put this behind you, with little or no damage to the rest of your life. You have a great attitude BTW. I am curious what made you tx now versus triple therapy, less time coming out soon.
Megan, thats what we're all here for, so vent, b*tch, whine all you need. I did my share and there IS days you want to just crawl off of the Earth! Any of those days I 'gave' myself and knew it would pass, so will your bad days. My worst symptoms, before finally getting the proper dx of Hep, were muscle, joint pain, dibilitationg fatigue. My whole body would ache for days at a time. I'd lie to friends, co-workers, say I'm busy (not knowing I was really sick) and crawl in bed for 2-3 days, aching, fatigued. My point is .....I had Hep over 30 yrs (we think) and I have tx'd and SVR'd and still have some body, muscle trouble so I do believe the years of Hep did some damage. It's very possible that your muscle, joint pain isn't going away UNTIL you rid yourself of Hep. The fatigue, body pain wasn't going away for me to treat 'feeling better' and my concern for you is if that is all your waiting for, it may not happen. You may have to re-think and start tx feeling bad, as I did. If/when you do.....
and this is simply a possibility, no suger coating.....on the tx drugs all that body pain can be intensified, the drugs aggravate it often, so DON'T quit because you think it's going to stay that way, can't take it. It's a side of tx, it will get better.
I wish you both the best in this and high hopes you beat this disease.
LL
Sry ram, i am a sick man. I have CMS. (can't member s**t) Winston Winston.Winston... now are we ok?? haha thanks friend....... ps i do member tommy and jimmy...just because i was rockin in da 70's and 80's has nothin to do with my memory
Megan, I can totally relate. I was in the most perfect of health. Low viral count, nearly perfect liver biopsy counts, after 20+ years of living (unknown) with C.
Docs put the fear of death into me even though I was living a busy and fantastic life... I treated for 72 straight weeks, cured, and now 3 or 4 years off treatment have been judged disabled and on SSID. I would rather be a able bodies citizen and miss my cycling, well, life in general.
I think you are doing the right thing by listening to your body and taking a break. You need to regain your strength and decide, with a clear head and best info on next treatment, when you are ready (unless you are in danger of losing your life).
Big Hugs and hope you do find health soon.
f
Docs put the fear of death into me even though I was living a busy and fantastic life... I treated for 72 straight weeks, cured, and now 3 or 4 years off treatment have been judged disabled and on SSID. I would rather be a able bodies citizen and miss my cycling, well, life in general.
I think you are doing the right thing by listening to your body and taking a break. You need to regain your strength and decide, with a clear head and best info on next treatment, when you are ready (unless you are in danger of losing your life).
Big Hugs and hope you do find health soon.
f
Oh, yeah, I remember. Wasn't that the guy who met with Tommy Roosevelt and Jimmy Stalin where the signed some paper about a malta. They called them the "Big Tree"or something...
You have my prayers and best thoughts for your tough time. I have only been around here for a few months and have not started tx yet. I read a thread the other day by William Churchill I think. (WHEN GOING THRU HELL DON'T STOP). Hang in there, I am sure there is light at the end of your tunnel. You have alot of life ahead of you. There are alot of really good and WISE people in this forum that will be there for ya. P.S. Screaming is good sometimes.
sorry, i can relate somewhat, i'm 18 and had to transfer universities just to do tx at home, and sometimes i feel like tx has somewhat hampered my education. i feel like i've lost a lot of friends going through this and also feel like an absolute burden to my poor parents. on top of that, i have to stay full time student in college just to be on insurance, and i have to take an extra shot of Neupogen every week and get my labs done at least every wk.
i just had a Neupogen last night and for some reason just not feelling like myself at all. i get body aches and my head feels so stuffed and hot and i had night sweats last night.
but you know what, i think we're doing the right thing for our future. 27 is way below current marriage age for women so don't rush it. try to keep life as normal as possible with your attitude even if there have been some changes. no one said you can't live your life during tx, it's life maybe just in a different way. tx will be done in no time good luck!
i just had a Neupogen last night and for some reason just not feelling like myself at all. i get body aches and my head feels so stuffed and hot and i had night sweats last night.
but you know what, i think we're doing the right thing for our future. 27 is way below current marriage age for women so don't rush it. try to keep life as normal as possible with your attitude even if there have been some changes. no one said you can't live your life during tx, it's life maybe just in a different way. tx will be done in no time good luck!
Sorry your feeling badly Megan, but maybe after taking the Actos your treatment would be a success....My doc is actually running a drug trial with SOC and Actos...
http://www.dhmc.org/webpage.cfm?site_id=2&org_id=102&morg_id=0&sec_id=0&gsec_id=46442&item_id=46494
http://www.dhmc.org/webpage.cfm?site_id=2&org_id=102&morg_id=0&sec_id=0&gsec_id=46442&item_id=46494
I'm sorry to hear about what you are going through. It's okay to vent, it's okay to feel frustrated and it's okay to b*tch once in a while. At least ppl here understand what you are going through and every one needs to let out some steam now and then.
Lots of hugs and hope that you are already on your way back up. The ride is a roller coaster ride!
marcia
Lots of hugs and hope that you are already on your way back up. The ride is a roller coaster ride!
marcia
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