Where is your favorite vacation spot? For a relaxing vacation I like Tahoe or the Big Sur area in Northern Cal.
But, anywhere you have to fly to get to these days, takes more energy than I have! It can take days or even weeks to recover from a vacation.
Isiscat2011 said
Jul 15, 2014
Dzdayscomin wrote:
Man am I jealous...........if I can get 2-3 hrs at a time I'm lucky, usually I'll be so tired I'll crash around 11pm then by 1:30-2:00 am I'm up till 5ish, and will sometimes fall a sleep until I gotta go to work, or else I just say screw it and go to work at 5ish.
I know the feeling but I usually get 4-5 hours before I wake up. Then, I can sometimes go back to sleep for another couple of hours, or I just stay up. When I stay up I really feel like crap all day. Our bodies need more/better sleep than this No wonder we feel exhausted. I'm lucky not to have sleep apnea but that couldn't be helping matters!
JoAnneh said
Jul 15, 2014
Thank you everyone! I haven't had a relaxing vacation in years As I normally go stay with grandchildren, cook, etc... I love the feedback and it is very helpful. This forum is awesome. I will get thyroid checked too. I sleep well. Will push myself to walk. Yes Malcolm 48 weeks of tx did a number on me physically I am so happy to be SVR! Yes a vacation would be awesome!
-- Edited by JoAnneh on Tuesday 15th of July 2014 02:24:07 PM
Dzdayscomin said
Jul 15, 2014
Huey wrote:There were days on tx that i slept for 15 hours. for three days straight.
Man am I jealous...........if I can get 2-3 hrs at a time I'm lucky, usually I'll be so tired I'll crash around 11pm then by 1:30-2:00 am I'm up till 5ish, and will sometimes fall a sleep until I gotta go to work, or else I just say screw it and go to work at 5ish.
I have Ambien but I don't take it very often because after a few nights using it you have to use it to get any sleep.
I'm always tired..... and I have apnea as well, but I don't tolerate CPAP so I have to sleep on my sides or stomach.... which with an enlarged spleen, portal hypertension, and cirrhosis that's just what you want to do right ??
And Malcom I wish you Dr's would figure out how to make us feel 20 again lol....If I had the physical condition I had then with the resources I have now I'd be having the greatest time I could imagine...wouldn't that be just incredible ?? I'm tired just thinking about it !
Duane
Huey said
Jul 15, 2014
Jaded wrote:
I was experiencing really bad fatigue over a period of a few months recently. I have had sleep disturbance which I recently discovered is not unusual for people with hep C (I also have early cirrhosis). I have used sleeping pills for 18 years but had to stop due to side effects. Since it had been about 6 months I decided to go back on them thinking I had given myself enough time to clear them and maybe it was just sleep deprivation. The very 1st night on went back on them I had an immediate energy improvement and realized that the problem was I just wasn't getting the sleep I needed. I thought something really bad was happening to me and felt like crap but it seems I need quite a bit of deep sleep to function and I just wasn't getting it without sleep aids. Maybe you might want ti discuss this with your Dr.
There were days on tx that i slept for 15 hours. for three days straight.
Isiscat2011 said
Jul 15, 2014
I think you may be onto something, Jaded. I have been experiencing a great deal of fatigue the past few months, and now that I think about it, I haven't been getting as much uninterrupted sleep. When I don't get a full 7-8 hours I am tired throughout the day and sometimes just become so exhausted during the day that I just fall asleep for a few minutes.
I thought this might be a symptom of hepatic encephalopathy. See what spending too much time on the Internet reading about this disease will do? Not only does it mess with your sleep but it causes self-diagnosis that is probably wrong more often than it is right. :) I'm probably more fatigued for the simple reason that I'm not sleeping enough. Thinking about this is exhausting. I need a nap.
Jaded said
Jul 14, 2014
I was experiencing really bad fatigue over a period of a few months recently. I have had sleep disturbance which I recently discovered is not unusual for people with hep C (I also have early cirrhosis). I have used sleeping pills for 18 years but had to stop due to side effects. Since it had been about 6 months I decided to go back on them thinking I had given myself enough time to clear them and maybe it was just sleep deprivation. The very 1st night on went back on them I had an immediate energy improvement and realized that the problem was I just wasn't getting the sleep I needed. I thought something really bad was happening to me and felt like crap but it seems I need quite a bit of deep sleep to function and I just wasn't getting it without sleep aids. Maybe you might want ti discuss this with your Dr.
mallani said
Jul 14, 2014
Hi JoAnne,
Provided other medical problems don't interfere, you can expect to live another 30- 35 years.
By 'age- related' I meant you don't have the energy of a 20 y.o. at 55. Sorry, didn't mean to be flippant.
When I was younger, I could easily play 36 holes of golf in a day. I recently had to play 24 in a match, and was pretty stuffed at the end.
Get your thyroid checked. Fatigue is often mental. You've had a gruelling 48 weeks of treatment and expect to feel great now it has been successful. Force yourself to go for long walks to get the endorphins flowing, or go for a holiday. Best of luck buddy.
Isiscat2011 said
Jul 14, 2014
Hi JoAnneh:
We cirrhotics can live a long time and that is particularly true when the cause of the liver disease is eliminated. There actually are prognostic models that can give us a general idea (MELD and Child-Pugh).
Yes, I have indulged in calculating my MELD and Child-Pugh scores and I can post a link with the formula to calculate your scores. Apparently, I have a life expectancy of 15-20 years, but that doesn't mean much to me. One never knows. Things could change for the better or for the worse and it may be entirely unrelated to my liver disease. We are also subject to the same hazards as everyone else, and while I'm busy contemplating my life expectancy, I could be hit by a large bus. :)
Quality of life is an issue I am more preoccupied with these days. It is interesting that Tig, who doesn't have cirrhosis, is experiencing many of the same problems as those who have cirrhosis, and he isn't alone. I think our health problems can seldom be attributable to one thing, i.e, the virus, the liver, the treatment. Just a combination of factors.
All we can do is take the best care of ourselves that we can. I'm convinced that diet and exercise have a hand in quality of life issues. Living healthy and trying to maintain a happy outlook. Easier said than done when we are having bad days (or bad weeks). A sense of humor helps me, but then, I come from a long line of people who like to laugh--even when they shouldn't--gallows humor.
I also recommend taking CoQ-10 but I could be full of ****e on that one.
Dzdayscomin said
Jul 14, 2014
Hi Joanne,
I have pondered this question as well, I feel much older than my years and I'm am sure Cirrhosis plays a huge part.
I think you can expect to live quite some time with the illness depending on how bad it is, but the quality of that life is less than what we desire for sure.
I think I have said this before but I look at it like I am a chemistry set that has got too much of this, and not enough of that, and it all equals a bad reaction.
Hang in there I hope the walking helps, I love walking until a few hrs after, and then it becomes cramps so it seems that no matter how much we try to do the healthy thing we get a punishment for doing it.
But then I think of my Kids and Granddaughter and the pain is just a bit more tolerable.
Duane
Tig said
Jul 14, 2014
Hi Joanne,
I'm seeing more comments here and elsewhere from people that underwent Interferon based therapies that are experiencing the same issues. Whether we should consider it a form of depression or not is a topic for discussion. It certainly seems like it should be given that consideration. I had a renewed sense of motivation and desire toward the end of my treatment. Good Lord, I about remodeled the interior of my house out of shear boredom, painting, tile, replanted gardens outside, you name it, I tried to do it. Then I started to experience the same things you're talking about. My mood started to change, my large joints and spine have begun to deteriorate and are increasingly painful, likely from Interferon. I had F2-3 fibrosis by biopsy and my LFT's have returned to normal, so there is no evidence of inflammation. Any fibrosis progression has halted as a result of SVR. So I think as long as our blood work and ultrasounds remain satisfactory, life expectancy shouldn't be affected by it Even with compensated cirrhosis (following SVR), as long as your health remains good/stable and you don't experience any new problems with your liver, there shouldn't be an expectation of continued or increased liver problems.
I'm more interested and concerned about the possibility of post treatment side effects from the drugs. I think that's what I'm experiencing at this stage and am looking into it with vigor.
Tig
JoAnneh said
Jul 14, 2014
Jimbob I sent Malcolm a message last
Week, he said it may be age related:) not an
Answer a determined vibrant person likes to hear.
Fireman Rob, I will get throid checked! Great idea!
Thanks guys!
Fireman Rob said
Jul 14, 2014
Hi JoAnne,
I'm not sure about the Cirrhosis question but wanted to throw out the idea of having your thyroid levels checked. I know these HCV meds can mess with your thyroid and if your levels are off, this often times results in extreme fatigue. Even without taking meds in the past, thyroid level imbalances aren't extremely uncommon.
There are some simple tests that can be performed through your primary care physician to rule this out.
Good luck and let us know what you find out.
-Rob
jimbob said
Jul 14, 2014
Hi Joanne.
Sorry you are feeling fatigued. Wish I could help, but this is a question for the mods or Malcolm. Hope you find relief and start feeling better soon.
JoAnneh said
Jul 14, 2014
Any thoughts, facts on how long we can live with chirrhosis?
i achieved SVR, I don't drink alcohol. I am 55 and always
had abdunbant energy. I struggle with extreme fatigue.
I was wondering if anyone else going thru this?
i have started taking vitamins, I don't smoke and have loss
the desire to be in the sun (always been outdoor type)
dont ride my bike either. i don't have desire to exercise.
i am going to force myself to start walking this evening.
i eat lots of vegtables and fruit but indulgence in dessert.
i am going to remove dessert and walk to see if it helps.
____________________________________________________________________________________________________________
I know the feeling but I usually get 4-5 hours before I wake up. Then, I can sometimes go back to sleep for another couple of hours, or I just stay up. When I stay up I really feel like crap all day. Our bodies need more/better sleep than this No wonder we feel exhausted. I'm lucky not to have sleep apnea but that couldn't be helping matters!
Thank you everyone!
I haven't had a relaxing vacation in years
As I normally go stay with grandchildren, cook, etc...
I love the feedback and it is very helpful.
This forum is awesome.
I will get thyroid checked too. I sleep well.
Will push myself to walk. Yes Malcolm
48 weeks of tx did a number on me physically
I am so happy to be SVR!
Yes a vacation would be awesome!
-- Edited by JoAnneh on Tuesday 15th of July 2014 02:24:07 PM
Man am I jealous...........if I can get 2-3 hrs at a time I'm lucky, usually I'll be so tired I'll crash around 11pm then by 1:30-2:00 am I'm up till 5ish, and will sometimes fall a sleep until I gotta go to work, or else I just say screw it and go to work at 5ish.
I have Ambien but I don't take it very often because after a few nights using it you have to use it to get any sleep.
I'm always tired..... and I have apnea as well, but I don't tolerate CPAP so I have to sleep on my sides or stomach.... which with an enlarged spleen, portal hypertension, and cirrhosis that's just what you want to do right ??
And Malcom I wish you Dr's would figure out how to make us feel 20 again lol....If I had the physical condition I had then with the resources I have now I'd be having the greatest time I could imagine...wouldn't that be just incredible ?? I'm tired just thinking about it !
Duane
There were days on tx that i slept for 15 hours. for three days straight.
I think you may be onto something, Jaded. I have been experiencing a great deal of fatigue the past few months, and now that I think about it, I haven't been getting as much uninterrupted sleep. When I don't get a full 7-8 hours I am tired throughout the day and sometimes just become so exhausted during the day that I just fall asleep for a few minutes.
I thought this might be a symptom of hepatic encephalopathy. See what spending too much time on the Internet reading about this disease will do? Not only does it mess with your sleep but it causes self-diagnosis that is probably wrong more often than it is right. :) I'm probably more fatigued for the simple reason that I'm not sleeping enough. Thinking about this is exhausting. I need a nap.
Hi JoAnne,
Provided other medical problems don't interfere, you can expect to live another 30- 35 years.
By 'age- related' I meant you don't have the energy of a 20 y.o. at 55. Sorry, didn't mean to be flippant.
When I was younger, I could easily play 36 holes of golf in a day. I recently had to play 24 in a match, and was pretty stuffed at the end.
Get your thyroid checked. Fatigue is often mental. You've had a gruelling 48 weeks of treatment and expect to feel great now it has been successful. Force yourself to go for long walks to get the endorphins flowing, or go for a holiday. Best of luck buddy.
Hi JoAnneh:
We cirrhotics can live a long time and that is particularly true when the cause of the liver disease is eliminated. There actually are prognostic models that can give us a general idea (MELD and Child-Pugh).
Yes, I have indulged in calculating my MELD and Child-Pugh scores and I can post a link with the formula to calculate your scores. Apparently, I have a life expectancy of 15-20 years, but that doesn't mean much to me. One never knows. Things could change for the better or for the worse and it may be entirely unrelated to my liver disease. We are also subject to the same hazards as everyone else, and while I'm busy contemplating my life expectancy, I could be hit by a large bus. :)
Quality of life is an issue I am more preoccupied with these days. It is interesting that Tig, who doesn't have cirrhosis, is experiencing many of the same problems as those who have cirrhosis, and he isn't alone. I think our health problems can seldom be attributable to one thing, i.e, the virus, the liver, the treatment. Just a combination of factors.
All we can do is take the best care of ourselves that we can. I'm convinced that diet and exercise have a hand in quality of life issues. Living healthy and trying to maintain a happy outlook. Easier said than done when we are having bad days (or bad weeks). A sense of humor helps me, but then, I come from a long line of people who like to laugh--even when they shouldn't--gallows humor.
I also recommend taking CoQ-10 but I could be full of ****e on that one.
Hi Joanne,
I have pondered this question as well, I feel much older than my years and I'm am sure Cirrhosis plays a huge part.
I think you can expect to live quite some time with the illness depending on how bad it is, but the quality of that life is less than what we desire for sure.
I think I have said this before but I look at it like I am a chemistry set that has got too much of this, and not enough of that, and it all equals a bad reaction.
Hang in there I hope the walking helps, I love walking until a few hrs after, and then it becomes cramps so it seems that no matter how much we try to do the healthy thing we get a punishment for doing it.
But then I think of my Kids and Granddaughter and the pain is just a bit more tolerable.
Duane
Hi Joanne,
I'm seeing more comments here and elsewhere from people that underwent Interferon based therapies that are experiencing the same issues. Whether we should consider it a form of depression or not is a topic for discussion. It certainly seems like it should be given that consideration. I had a renewed sense of motivation and desire toward the end of my treatment. Good Lord, I about remodeled the interior of my house out of shear boredom, painting, tile, replanted gardens outside, you name it, I tried to do it. Then I started to experience the same things you're talking about. My mood started to change, my large joints and spine have begun to deteriorate and are increasingly painful, likely from Interferon. I had F2-3 fibrosis by biopsy and my LFT's have returned to normal, so there is no evidence of inflammation. Any fibrosis progression has halted as a result of SVR. So I think as long as our blood work and ultrasounds remain satisfactory, life expectancy shouldn't be affected by it Even with compensated cirrhosis (following SVR), as long as your health remains good/stable and you don't experience any new problems with your liver, there shouldn't be an expectation of continued or increased liver problems.
I'm more interested and concerned about the possibility of post treatment side effects from the drugs. I think that's what I'm experiencing at this stage and am looking into it with vigor.
Tig
Week, he said it may be age related:) not an
Answer a determined vibrant person likes to hear.
Fireman Rob, I will get throid checked! Great idea!
Thanks guys!
Hi JoAnne,
I'm not sure about the Cirrhosis question but wanted to throw out the idea of having your thyroid levels checked. I know these HCV meds can mess with your thyroid and if your levels are off, this often times results in extreme fatigue. Even without taking meds in the past, thyroid level imbalances aren't extremely uncommon.
There are some simple tests that can be performed through your primary care physician to rule this out.
Good luck and let us know what you find out.
-Rob
Sorry you are feeling fatigued. Wish I could help, but this is a question for the mods or Malcolm. Hope you find relief and start feeling better soon.
Any thoughts, facts on how long we can live with chirrhosis?
i achieved SVR, I don't drink alcohol. I am 55 and always
had abdunbant energy. I struggle with extreme fatigue.
I was wondering if anyone else going thru this?
i have started taking vitamins, I don't smoke and have loss
the desire to be in the sun (always been outdoor type)
dont ride my bike either. i don't have desire to exercise.
i am going to force myself to start walking this evening.
i eat lots of vegtables and fruit but indulgence in dessert.
i am going to remove dessert and walk to see if it helps.
any other suggestions?