Had my blood tests today. Doc reduced my RIBA to 600 due to hgb at 9.2. They'll check again next week. Maybe I will feel better but I wish they would have tried reducing to just 800 first...I know low hgb is normal on meds.
-- Edited by KLG on Friday 15th of March 2013 03:10:00 AM
KLG said
Mar 14, 2013
I agree Malcolm. I have some difficulty communicating with the nurse. Seems like she starts conversations in the middle and it takes me a while to figure out what she's talking about. She was actually the one who raised the issue of the RIBA reduction with my doctor and she was passing along the doctors reply (or her version of the doctors reply.) to me. needless to say I am not doing anything until I hear it out of my doctors own mouth. Some of my counts are below normal and I suspect my nurse may have inquired about the RIBA reduction because when she saw me at last appt, i was also having difficulty breathing and had tachycardia.
I go in for labs every week so I will get an update tomorrow. I think it was the rbc and hemoglobin that were below normal.
mallani said
Mar 14, 2013
Hi Kathi,
It's a worry when a Nurse calls and says you can drop your Riba to 800mg 'if you want to'. Do you know your Hb level? I would try to stay on the maximum possible dosage, because at 55, this is your best chance of clearing the virus. Cheers.
KLG said
Mar 14, 2013
Hi Zlikster, I suspect the drop in my blood counts is part of my problem too. Nurse called earlier this week and said I could reduce RIBA to 800 if I needed too but doc said staying at 1000 is best. So I'm staying at 1000 until they make me drop the dosage!
I'm trying to track my sx too, or at least trying to figure out what days I feel a little better. My sx were pretty light too the first couple of weeks but just got worse over time. Ah well, I just need to not beat myself up over the fact that I feel like crap because if push comes to shove I have the leave time accrued to stay out on disability for 6 months. (But that might blow a big hole in my plan to spend a month in Spain next year!)
Of course my decision to spend more time traveling now - rather than waiting until I retire -was fueled by all my stupid health problems. As they say, life is short, enjoy the ride!
Zlikster said
Mar 14, 2013
hi Kathy (i am also g3, on 24week riba/int)
i am desepratly trying to find sx weekly pattern, but no luck...every week is different. What i have noticed is, corelation between blood (WBC/RBC count) and feeling ****ty. As my WBC goes down i am getting constant small infections (throat, rash, nose, mouth) and as my Hg and RBC goes down i am sleeping more and have less energy. Still can't figure out why i sometimes have nausea for few days after shot, sometimes nothing. Yogurts seem to help it a bit.
I had really small sx first 2 weeks (except on the Fridays after shot), was hitting ski slopes almost each day, but now i feel like 90year old gramps... oh well, 4 more months of being ultraold
KLG said
Mar 14, 2013
You're right DJ. We are lucky that that we are only on double tx and for only 24 weeks. I need to force myself to be a little more active next week and see if that helps.
It also helps to be able to chat with people going through the same thing, as others don't really understand how flipping crappy these meds can make you feel.
DJ said
Mar 14, 2013
My doctor said that the third month gets a little harder, and she was right. My first two months were not bad at all, but I am in the third month now and I am much more tired than I was the first two months. So I wouldn't expect it to get better until treatment is over. I see you are Geno 3 like me, so honestly I think we have it a bit easier without the third medicine and we only have to go for 24 weeks...and I keep reminding myself that 24 weeks is nothing compared to the rest of my life, and I just need to do this now and get it done and overwith. Do what you have to do to keep on going. Life will return to normal later on. I am about 3 shots ahead of you.....and I will take my last one at the end of June, then I plan to rest in July and recover and go to Disney World in August to celebrate :) There will be life after treatment! Hang in there.
KLG said
Mar 14, 2013
Mary Jane, I confess that the wrist tat is not mine, I just loved the pic and its what I tell myself everytime I start a trial.
KLG said
Mar 14, 2013
Sounds like you and I both work for social services 12stepguy, except you are at the beginning and I am at the "end." (I file legal actions to revoke licenses when the clients are abused/ neglected.) I handle all facility types - foster homes, child care, retirement homes, homes for developmentally disabled adults (aka"ARF's"), group homes etc.
Funny thing is that with the way I am feeling, I haven't even gotten to the point of wondering how I will do my job, I am still stuck on how I will even manage to make it to the lobby of my building without collapsing...
JoAnneh said
Mar 14, 2013
If 12-Step Guy and Jime can't bring a smile nothing can! You hang in there. You are fighting for your LIVER, Can't live without it! Pushing myself keeps me from wanting to Cry and makes me forget about Hep C and sx! I commit to church, bible study very laid back at Friends house weekly and.....I go to work Up to 2 days a week 5 hour day! I also keep company books for our son's Company. Are u on double tx?
12Step Guy said
Mar 14, 2013
I'm on my third time down this road. What I've learned is to take it slow and easy. I mostly rest weekends, days, and evenings. And save what little energy I have for a few hours of work every other day. Lucky for me I work out of my home most of the time. But I still have to visit foster homes a couple times a week. (I license homes for developmentally disabled adults) but the visits are short and dont require much concentration.
But Ive cut about everything else out. I get to one AA meeting per week, a little grocery shopping and asking for help with everything else. For me its not that it gets easier, I just try and adapt more. If it is any consolation youre not alone in swimming upstream against muck and mud. Practice acting scatterbrained now while you can, because at week 30 they will think it is normal. Ive been hiding dollar bills in the fridge and putting Carols car keys in the freezer.
JIme said
Mar 14, 2013
Yes, you will. Probably not till after tx though. Each day is different.
I was able to force myself to work ( I didn't really have a choice ) and I think that helped me with the sx. I kept moving throughout the day and then collapsed when I got home. It worked for me.
Good luck! Drink water.
KLG said
Mar 14, 2013
Shot #7 coming up on Friday. For some reason I thought i would start to acclimate to the meds but instead I just feel worse every day. My body just feels like it wants to collapse. I took the first two months off but anticipated going back to work part time April 1st. I just don't see how I can do it...
So I just feel like whining right now. Hoping someone will say, no worries, you'll feel great in a couple of weeks. LOL. Do you think it would help if I just force myself to be more active?
Mary Jane said
Mar 13, 2013
Hey Kathi... yes, you can have some cheese with your whine... everyone is different, and it depends on your job & how on your feet or stressful it is.. you're on dual trx correct? Ya probably won't feel like new money till ya finish trx. You will discover ways to " let some things go" and ask for help. Be sure to get as much rest as you can, and enjoy the little things.. your liver says " thank you" all the best to you ... P & L MJ
PS love the tat on the wrist " just breath" my famous saying , good one
-- Edited by Mary Jane on Wednesday 13th of March 2013 11:21:30 PM
-- Edited by KLG on Friday 15th of March 2013 03:10:00 AM
I go in for labs every week so I will get an update tomorrow. I think it was the rbc and hemoglobin that were below normal.
Hi Kathi,
It's a worry when a Nurse calls and says you can drop your Riba to 800mg 'if you want to'. Do you know your Hb level? I would try to stay on the maximum possible dosage, because at 55, this is your best chance of clearing the virus. Cheers.
I'm trying to track my sx too, or at least trying to figure out what days I feel a little better. My sx were pretty light too the first couple of weeks but just got worse over time. Ah well, I just need to not beat myself up over the fact that I feel like crap because if push comes to shove I have the leave time accrued to stay out on disability for 6 months. (But that might blow a big hole in my plan to spend a month in Spain next year!)
Of course my decision to spend more time traveling now - rather than waiting until I retire -was fueled by all my stupid health problems. As they say, life is short, enjoy the ride!
i am desepratly trying to find sx weekly pattern, but no luck...every week is different. What i have noticed is, corelation between blood (WBC/RBC count) and feeling ****ty. As my WBC goes down i am getting constant small infections (throat, rash, nose, mouth) and as my Hg and RBC goes down i am sleeping more and have less energy. Still can't figure out why i sometimes have nausea for few days after shot, sometimes nothing. Yogurts seem to help it a bit.
I had really small sx first 2 weeks (except on the Fridays after shot), was hitting ski slopes almost each day, but now i feel like 90year old gramps... oh well, 4 more months of being ultraold
It also helps to be able to chat with people going through the same thing, as others don't really understand how flipping crappy these meds can make you feel.
Funny thing is that with the way I am feeling, I haven't even gotten to the point of wondering how I will do my job, I am still stuck on how I will even manage to make it to the lobby of my building without collapsing...
You hang in there. You are fighting for your LIVER,
Can't live without it!
Pushing myself keeps me from wanting to
Cry and makes me forget about Hep C and sx!
I commit to church, bible study very laid back at
Friends house weekly and.....I go to work
Up to 2 days a week 5 hour day!
I also keep company books for our son's
Company.
Are u on double tx?
I'm on my third time down this road. What I've learned is to take it slow and easy. I mostly rest weekends, days, and evenings. And save what little energy I have for a few hours of work every other day. Lucky for me I work out of my home most of the time. But I still have to visit foster homes a couple times a week. (I license homes for developmentally disabled adults) but the visits are short and dont require much concentration.
But Ive cut about everything else out. I get to one AA meeting per week, a little grocery shopping and asking for help with everything else. For me its not that it gets easier, I just try and adapt more. If it is any consolation youre not alone in swimming upstream against muck and mud. Practice acting scatterbrained now while you can, because at week 30 they will think it is normal. Ive been hiding dollar bills in the fridge and putting Carols car keys in the freezer.
I was able to force myself to work ( I didn't really have a choice ) and I think that helped me with the sx. I kept moving throughout the day and then collapsed when I got home. It worked for me.
Good luck! Drink water.
So I just feel like whining right now. Hoping someone will say, no worries, you'll feel great in a couple of weeks. LOL. Do you think it would help if I just force myself to be more active?
Hey Kathi... yes, you can have some cheese with your whine... everyone is different, and it depends on your job & how on your feet or stressful it is.. you're on dual trx correct? Ya probably won't feel like new money till ya finish trx. You will discover ways to " let some things go" and ask for help. Be sure to get as much rest as you can, and enjoy the little things.. your liver says " thank you" all the best to you ... P & L MJ
PS love the tat on the wrist " just breath" my famous saying , good one
-- Edited by Mary Jane on Wednesday 13th of March 2013 11:21:30 PM