That is ridiculous is there nothing you can do no one you can contact in government or Mr President how can they expect the average person pay for medical costs and maintain a healthy lifestyle. Instead of Oprah building these schools elsewhere maybe she could help pay medical bills for people in the US who have incurable diseases!!
bubba29 said:
my parents pay $30,000/year for health insurance here in the US. they are self insured. with my dad having PSC and UC, the premium is VERY expensive.
Yes it totally BLOWS here in the USA , our for profit healthcare system.. When you get sick you have to worry about not getting well, but can I afford to get sick. I mean really it is crazy how these RICH politicians lie about healthcare.. You see when you are MEGA rich you can afford to get sick, getting care is their last worry because they get the BEST OF THE BEST..
It's a no win situation with average people, they make applying for medicare so hard. I just pray & hope I can find some kind of assistance.
Crixus Theresa said:
I can't imagine how I would get through this without the health insurance we have in Canada. It is incredible that someone has to be burdened with worrying about paying medical costs after being diagnosed with such a devestating disease. I really don't have any other symptons right now other then the weight loss and have not gained any weight back. The thing that pisses me off is my GI tells me to go live life as I normally would well now my life will never be the way it use to. They have no idea how we feel or what we go thru as they have never experienced this other then what they have read in a medical text book.
Crixus said:
Hi Theresa,
I don't know how these doctors can even state that PSC does not cause weight lost when some people have digestive issues , loss of appetite which will cause you to lose weight.
that link says it. I lost 27lbs or maybe even 30lbs.. I didn't like looking at myself either, I thought I had cancer... but my symptoms started to actively progressing in month of May which lead me to the ER for my diagnosis on June 2nd. I have an app on my phone where I am keeping up with my calories I take in a day.. I am getting about 2700 - 3000 calories a day ..one day I got 4012 calories.. I have not started gaining weight.. I am going to stop obsessing over it , my doctor said I will gain weight back eventually. But for months after my gallbladder removed I had no appetite, food upset my stomach, everytime I ate I ran to the bathroom. So I think my digestive issues had a lot to do w/ the weight loss , & my intestines was not getting the bile it needed to properly absorb & digest foods.
So I don't know how doctors can say that weight loss is not associated w/ PSC
Crixus
Theresa said:
Hi Cynthia
I was diagnosed with PBC then doctor said PSC now he is back to PBC but he says no matter which one outcome is the same. I initially went to my doctor back in March 2011 due to sudden weight loss and after many months of bloodwork scans ultrasounds MRI and specialists I was diagnosed in November. Funny thing is my GI says my weight loss has nothing to do with my disease which after reading up on it I feel it is a big factor to the weight loss. I am 5'7 and have lost close to 25 lbs weight that I didnot need to lose. I know exactly how you feel about the shorts and sleeveless tops I hated looking at my legs and arms for the longest time I had just gotten to a point where I was toning up before my diagnosis going to the gym etc but now I find it hard to keep up with the rapid weight loss and loose skin. I have started wearing tank tops again and longer shorts I am a beautiful person inside and outside and if someone doesn't like the way my arms or legs look then they don't have to look at them. I keep active walking my 2 dogs several times a day plan on going back to the gym and eat healthy. The best thing we can do with this disease is stay positive and not let it destroy the life we have ahead of us.
Sleep disturbances - check. Weight loss - check. And no matter what anyone says, it's from the PSC. Someone else I know with PSC called it "like being in a cruel science experiment." How true.
Crixus said:
Hi Theresa,
I don't know how these doctors can even state that PSC does not cause weight lost when some people have digestive issues , loss of appetite which will cause you to lose weight.
that link says it. I lost 27lbs or maybe even 30lbs.. I didn't like looking at myself either, I thought I had cancer... but my symptoms started to actively progressing in month of May which lead me to the ER for my diagnosis on June 2nd. I have an app on my phone where I am keeping up with my calories I take in a day.. I am getting about 2700 - 3000 calories a day ..one day I got 4012 calories.. I have not started gaining weight.. I am going to stop obsessing over it , my doctor said I will gain weight back eventually. But for months after my gallbladder removed I had no appetite, food upset my stomach, everytime I ate I ran to the bathroom. So I think my digestive issues had a lot to do w/ the weight loss , & my intestines was not getting the bile it needed to properly absorb & digest foods.
So I don't know how doctors can say that weight loss is not associated w/ PSC
Crixus
Theresa said:
Hi Cynthia
I was diagnosed with PBC then doctor said PSC now he is back to PBC but he says no matter which one outcome is the same. I initially went to my doctor back in March 2011 due to sudden weight loss and after many months of bloodwork scans ultrasounds MRI and specialists I was diagnosed in November. Funny thing is my GI says my weight loss has nothing to do with my disease which after reading up on it I feel it is a big factor to the weight loss. I am 5'7 and have lost close to 25 lbs weight that I didnot need to lose. I know exactly how you feel about the shorts and sleeveless tops I hated looking at my legs and arms for the longest time I had just gotten to a point where I was toning up before my diagnosis going to the gym etc but now I find it hard to keep up with the rapid weight loss and loose skin. I have started wearing tank tops again and longer shorts I am a beautiful person inside and outside and if someone doesn't like the way my arms or legs look then they don't have to look at them. I keep active walking my 2 dogs several times a day plan on going back to the gym and eat healthy. The best thing we can do with this disease is stay positive and not let it destroy the life we have ahead of us.
Sleep disturbances - check. Weight loss - check. And no matter what anyone says, it's from the PSC. Someone else I know with PSC called it "like being in a cruel science experiment." How true.
Crixus said:
Hi Theresa,
I don't know how these doctors can even state that PSC does not cause weight lost when some people have digestive issues , loss of appetite which will cause you to lose weight.
that link says it. I lost 27lbs or maybe even 30lbs.. I didn't like looking at myself either, I thought I had cancer... but my symptoms started to actively progressing in month of May which lead me to the ER for my diagnosis on June 2nd. I have an app on my phone where I am keeping up with my calories I take in a day.. I am getting about 2700 - 3000 calories a day ..one day I got 4012 calories.. I have not started gaining weight.. I am going to stop obsessing over it , my doctor said I will gain weight back eventually. But for months after my gallbladder removed I had no appetite, food upset my stomach, everytime I ate I ran to the bathroom. So I think my digestive issues had a lot to do w/ the weight loss , & my intestines was not getting the bile it needed to properly absorb & digest foods.
So I don't know how doctors can say that weight loss is not associated w/ PSC
Crixus
Theresa said:
Hi Cynthia
I was diagnosed with PBC then doctor said PSC now he is back to PBC but he says no matter which one outcome is the same. I initially went to my doctor back in March 2011 due to sudden weight loss and after many months of bloodwork scans ultrasounds MRI and specialists I was diagnosed in November. Funny thing is my GI says my weight loss has nothing to do with my disease which after reading up on it I feel it is a big factor to the weight loss. I am 5'7 and have lost close to 25 lbs weight that I didnot need to lose. I know exactly how you feel about the shorts and sleeveless tops I hated looking at my legs and arms for the longest time I had just gotten to a point where I was toning up before my diagnosis going to the gym etc but now I find it hard to keep up with the rapid weight loss and loose skin. I have started wearing tank tops again and longer shorts I am a beautiful person inside and outside and if someone doesn't like the way my arms or legs look then they don't have to look at them. I keep active walking my 2 dogs several times a day plan on going back to the gym and eat healthy. The best thing we can do with this disease is stay positive and not let it destroy the life we have ahead of us.
Theresa
Theresa,
Thanks for what you said about Oprah going to other countries to build schools and hospitals and all that crap. What about how sick Americans are faring? And I'll tell you this, it's getting harder and harder for me to maintain a "positive" attitude when my life is a medical and financial hell. And things are getting worse every year. They aren't going to get better. I already know that. Be very very happy you live in Canada.
I feel so bad for you I can't imagine the stress you must be under with everything you have to deal with. So what happens if someone needs a transplant are you responsible for the hospital bills for the surgery and the transplant??
danabee said:
danabee said:
Sleep disturbances - check. Weight loss - check. And no matter what anyone says, it's from the PSC. Someone else I know with PSC called it "like being in a cruel science experiment." How true.
Crixus said:
Hi Theresa,
I don't know how these doctors can even state that PSC does not cause weight lost when some people have digestive issues , loss of appetite which will cause you to lose weight.
that link says it. I lost 27lbs or maybe even 30lbs.. I didn't like looking at myself either, I thought I had cancer... but my symptoms started to actively progressing in month of May which lead me to the ER for my diagnosis on June 2nd. I have an app on my phone where I am keeping up with my calories I take in a day.. I am getting about 2700 - 3000 calories a day ..one day I got 4012 calories.. I have not started gaining weight.. I am going to stop obsessing over it , my doctor said I will gain weight back eventually. But for months after my gallbladder removed I had no appetite, food upset my stomach, everytime I ate I ran to the bathroom. So I think my digestive issues had a lot to do w/ the weight loss , & my intestines was not getting the bile it needed to properly absorb & digest foods.
So I don't know how doctors can say that weight loss is not associated w/ PSC
Crixus
Theresa said:
Hi Cynthia
I was diagnosed with PBC then doctor said PSC now he is back to PBC but he says no matter which one outcome is the same. I initially went to my doctor back in March 2011 due to sudden weight loss and after many months of bloodwork scans ultrasounds MRI and specialists I was diagnosed in November. Funny thing is my GI says my weight loss has nothing to do with my disease which after reading up on it I feel it is a big factor to the weight loss. I am 5'7 and have lost close to 25 lbs weight that I didnot need to lose. I know exactly how you feel about the shorts and sleeveless tops I hated looking at my legs and arms for the longest time I had just gotten to a point where I was toning up before my diagnosis going to the gym etc but now I find it hard to keep up with the rapid weight loss and loose skin. I have started wearing tank tops again and longer shorts I am a beautiful person inside and outside and if someone doesn't like the way my arms or legs look then they don't have to look at them. I keep active walking my 2 dogs several times a day plan on going back to the gym and eat healthy. The best thing we can do with this disease is stay positive and not let it destroy the life we have ahead of us.
Theresa
Theresa,
Thanks for what you said about Oprah going to other countries to build schools and hospitals and all that crap. What about how sick Americans are faring? And I'll tell you this, it's getting harder and harder for me to maintain a "positive" attitude when my life is a medical and financial hell. And things are getting worse every year. They aren't going to get better. I already know that. Be very very happy you live in Canada.
The answer is, unfortunately, Yes. I had an internal bleed about 3 years ago and when I woke up in ICU the next morning, the hepatologist (with the least amount of bed manners) came in and said, "Well, you'd be on the transplant list now if you had insurance." Really. I'm not kidding. I have Medicare because I'm on Social Security Disability now, but after I qualified for SSDI it took 2 years to get the Medicare. Insanity, pure insanity. And Medicare pays only 80%. You're responsible for the rest. I'm hoping to get Medicaid within the next few months but have to sell my condo (at a great loss) to do so. Financial ruination. Oh, and SSDI payments are at or below the poverty level. I just cut off my cable TV today - too much money. Yes, I wish I had been born Canadian.
I cannot believe that in this day and age people are denied medical treatment due to their economic ability. I thought when people became surgeons, doctors, nurses it was because they had a heart and wanted to help people. So you now have a double whammy waiting to get on donor list and finding a way to pay for your treatment unbelievable!!!! May I ask how old you were when diagnosed and how long ago you were diagnosed?? There has to be some sort of fund that can be set up for people who are unable to pay for their surgery this is not a luxury like a face lift. This is not something that we chose to go through. What about the Liver Foundation do they have any sort of programs to assist you?? I wish there was something I could do to help you honestly if I were in a position financially to help I would do it in a second.
danabee said:
Theresa,
The answer is, unfortunately, Yes. I had an internal bleed about 3 years ago and when I woke up in ICU the next morning, the hepatologist (with the least amount of bed manners) came in and said, "Well, you'd be on the transplant list now if you had insurance." Really. I'm not kidding. I have Medicare because I'm on Social Security Disability now, but after I qualified for SSDI it took 2 years to get the Medicare. Insanity, pure insanity. And Medicare pays only 80%. You're responsible for the rest. I'm hoping to get Medicaid within the next few months but have to sell my condo (at a great loss) to do so. Financial ruination. Oh, and SSDI payments are at or below the poverty level. I just cut off my cable TV today - too much money. Yes, I wish I had been born Canadian.
30,000 a year for insurance is totally NUTS.... I can't believe we have ignorant people who are against Universal Healthcare.. It's so sad that your health & your life depends on your wealth. I looking into get some kind of assistance but I can see its going to be a challenge.
I wish I was born in Canada too.. I would not have to worry about PAYING for my care, I could focus on GETTING WELL like anyone who's sick should have to worry about.
Crixus, you can go ahead and just apply for Medicaid and see what happens. I've heard they have a new program that is specifically for people who do work and have some kind of income. That's all I know. Applying for SSDI is complex and you have to have patience with the process. I had help from a Senator's office (Democratic, of course). My sister is a politician and she knew him and his staff. BUT, you can go to any politician's office (just go there, show up) and ask for their assistance in helping to facilitate the process. That's what they're supposed to do for their constituents - help them through the complicated ropes of the Federal Government. If you get a mild to yucky response, keep going till you find one who will help you out. You have to fill out their form, which you can do online, and provide them with all your relevant medical records. I think all you have to do is supply them with the names of the doctors, clinics, hospitals where you were treated, sign a release, and they will get the records themselves.
I also understand now (and no one told me this and SHOULD have!!!) that once you are accepted you have to wait two years for Medicare ---- BUT, you are eligible for Medicaid in the meantime. There are more restrictions (like what pharmacies you can use, some doctors/clinics don't accept, etc.) with Medicaid, but nothing like that (or rarely) with Medicare. With SSDI, they do ask you What is the last day you were able to work? I suppose if you are working part-time and it's not enough to cover your bills (including health insurance), that might be acceptable, too. At the time I applied, there was a certain date when I couldn't work anymore. I have since had some part-time work and I do freelance editing (not much), and that's okay as long as you don't do the work you were doing at the time you became unable to work. See what I mean?It's complicated. But it's not impossible. There are also lawyers who specialize in this area - that's all they do. And you could always ask for one free consultation and see what they say. I don't know what I'd do without SSDI, frankly.
Hi bubba, I have been following the liver diet in a book titled "The Cleveland Clinic Guide to Liver Disorders" written by doctors. It stresses lots of organic fresh fruits & veggies, 8 glasses of water a day, very little dairy, no glutin, small amounts of red meats, fish twice a week, non-glutin grains, & any type legumes, seeds, nuts. Its totally different than the way I ate three years ago, but I have gotten use to it. I eat small amounts almost every 2 hrs. I stopped taking Urosol a year ago as my doctor said it hasn't been proven to help with PSC. He was not the prescribing doctor, but I went with his discission. Guess I'll have to get over my vanity, but it's not easy when family & friends keep mentioning it. thanks for responding to my discussion !
i am not clear whether you eat legumes seeds and nuts.
Cynthia said:
bubba29 said:
Tell us about your diet
Hi bubba, I have been following the liver diet in a book titled "The Cleveland Clinic Guide to Liver Disorders" written by doctors. It stresses lots of organic fresh fruits & veggies, 8 glasses of water a day, very little dairy, no glutin, small amounts of red meats, fish twice a week, non-glutin grains, & any type legumes, seeds, nuts. Its totally different than the way I ate three years ago, but I have gotten use to it. I eat small amounts almost every 2 hrs. I stopped taking Urosol a year ago as my doctor said it hasn't been proven to help with PSC. He was not the prescribing doctor, but I went with his discission. Guess I'll have to get over my vanity, but it's not easy when family & friends keep mentioning it. thanks for responding to my discussion !
I have experience some of what you said but I didn't associate it with "adrenaline rushes". I didn't know that's what you call it. I do have sleep disturbances all the time, I associate that w/ PSC symptoms. To my knowledge losing weight is another symptom of PSC. I have lost 27lbs or maybe even 30lbs since my gallbladder was remove Nov 2011/ I think my PSC symptoms were slowly progressing before I had the surgery, then in the next 7 months the gradually came on stronger & stronger which lead to my diagnosis on June 2nd 2012.
I am 5'5 & weight is 152lb . Seem like my weight has stabilized at that point when I use to weight 180lbs I was working out had a symetrical bodybuilder physique. I lost a lot of body fat, I am really cut & defined now, yes my muscles are smaller like my biceps, I still have muscle tone thighs just w/ no fat there..
For my sleep I do take Xanax to help me to relax so I can fall asleep I take .5mg at night along w/ my Hydroxyzine which both cause drowsyness. That has helped me to fall asleep but I still get sleep disturbances , my nightly sleep is always broken up . I don't think I get anymore than 4 hours sleep before waking up .. Now sometimes I do smoke a little pot that also helps me to knock out at night . I don't like lying down in the bed looking wild eyed or tossing in turning for 2 hours before falling asleep.
So from my understanding having PSC or any kind of liver disease you will experience sleep disturbences, guess in your book its adrenaline rush....
I have experience some of what you said but I didn't associate it with "adrenaline rushes". I didn't know that's what you call it. I do have sleep disturbances all the time, I associate that w/ PSC symptoms. To my knowledge losing weight is another symptom of PSC. I have lost 27lbs or maybe even 30lbs since my gallbladder was remove Nov 2011/ I think my PSC symptoms were slowly progressing before I had the surgery, then in the next 7 months the gradually came on stronger & stronger which lead to my diagnosis on June 2nd 2012.
I am 5'5 & weight is 152lb . Seem like my weight has stabilized at that point when I use to weight 180lbs I was working out had a symetrical bodybuilder physique. I lost a lot of body fat, I am really cut & defined now, yes my muscles are smaller like my biceps, I still have muscle tone thighs just w/ no fat there..
For my sleep I do take Xanax to help me to relax so I can fall asleep I take .5mg at night along w/ my Hydroxyzine which both cause drowsyness. That has helped me to fall asleep but I still get sleep disturbances , my nightly sleep is always broken up . I don't think I get anymore than 4 hours sleep before waking up .. Now sometimes I do smoke a little pot that also helps me to knock out at night . I don't like lying down in the bed looking wild eyed or tossing in turning for 2 hours before falling asleep.
So from my understanding having PSC or any kind of liver disease you will experience sleep disturbences, guess in your book its adrenaline rush....
Crixus
Thanks for responding. It sounds terrible to say this but I feel better knowing I'm not alone concerning these symptoms of wieght & sleep loss. Guess there is nothing we can do to change it? Just live the best we can by eatting right and keeping a good attitude, it's just really hard sometimes.
I never knew how to describe what I was feeling in my stomach. Adrenaline rush pretty much says it all. It has disrupted my sleep, and I have tried everything you have as well, with no noticable results. Its hard when you wake up in the morning and just don't feel you can do anything, much as your mind wants too. I used to be muscular and fit, but last year after a lot of problems and a few hospital admissions, I had lost all muscle I had, and lost about 25 lbs. I don't wear shorts or sleevless shirts either. I feel upset at times when people I know invite me on a hike, and I know I can't do it. I'm glad to hear you refused the Reclast...I know from my mother's experience it can cause more problems than its worth. My osteoporosis is moderate, although I haven't been back in to see how much it has progressed. I'm without insurance (believe me I've tried, been declined, appealed, but thats not the issue here) so I can't really give you any medically related advice to help, but I wanted you to know I've had the same symptoms, and hate it as well. The only advice I can give is to try and get out to the areas you enjoyed before all this stuff, and take a camera. Sit on a rock or a picnic bench and just take pictures. Its not quite the same, but you can still get out.
Best of luck to you.
Waterleaf,
Thanks for replying it helps alot to know others are experiencing some of the same symptoms. It's funny you mentioned photography, because I got a new camera & was thinking about working with black & white photos. My bone doctor perscribed 50,000 units of vit D once a week. This seems aufully high but guess (or hope ) the DR. knows what she's doing.
Hi danabee, thanks for replying to me I really appreciate all of our PSC Group's answers. It really helps to know I'm not alone with some of these weird symptoms. My doctors have no answers to this adrenaline feeling I get so they give me anxiety pills, and they dont help. I take 1000 ml calcium, and take a prescription vit. D of 50,000 units once a week. I stopped it for 2 weeks because I heard to much D can be bad, how is one to know what to do & who to believe? I get up at least 3-4 times a night & eat to get rid of the adrenaline rush ,but it doesn't help either. Sounds like there is alot of us who have this waking, eating cycle. I didn,t know our livers can't produce D anymore , good reason to stay on it...thanks
danabee said:
Cynthia,
I've never had the adrenaline rush in my stomach. It sounds awful and I'm really sorry you're having to go through this. I do wake up in the middle of the night and have to eat. And it doesn't seem to help much either.
The muscle and bone loss go with a dysfunctioning liver, unfortunately. I still go out and walk everyday. I think it helps me mentally and may help a little bit physically. I don't know. But my hep is a big proponent of exercise. So I get out there and move. Walking is just about the best exercise for me. Other things will give me big muscle aches and knots. I'd like to swim but I know it'd be bad for my skin.
I take a LOT of vitamin D3. At least 4,000 units a day. I'm going to up it to 10,000 this week. I have osteopenia but not osteoporosis. And I think the weight-bearing exercise can help with this. I also take calcium, 1,000 mg a day. I had breast cancer last fall and now have to take Aromasin that depletes the body of estrogen. This only adds to the bone loss problem. Your liver can't produce vitamin D anymore, so that's why it's important to supplement it. I found some at Sam's Club that is 5,000 units per tablet, so that's what I'm getting. They wanted to put me on Boniva or some shit like that, but I'm not going to take it. Unless I start breaking bones. I don't think I will.
Hang in there. Can you go with live donor? My doctor recently told me I can go back to that "program." They do lots of live donor surgeries at univ. of colorado hospital.
Hi Nancy, I'm so sorry to hear you have lost so much weight, I've only lost 30lbs but that puts me at 95-96 lbs. I didn't need to lose and I'm sure you didn't either. I have nausea also and after much thought and several nausea meds (which are bad for the liver) I have started smoking pot ( My doc actually suggested it). It helps sometimes both with sleep & appetite, but not everytime. The bad part is I worry family & friends will think bad of me. thank you for your input.
God bless and comfort you
Nancy said:
I don't have the adrenaline rush that you have, but I have experienced muscle loss of over 25%. I have also lost 47 pounds in 6 weeks mostly because I do not seem to have an appetite. My daughter calls and makes sure that I am eating even though I don't feel hungry. My doctor said that walking will help the digestive process and it seems to keep the nausea at bay. Sorry I can't help any more but I will keep you in my thoughts and prayers.
Thank you for all the info I'm really learning alot from everyone! I had my galblader removed 2 yrs ago, but my wieght loss started before that , I lost the 30 lbs within one month & just cant gain any back. I didn't know I was supose to take my vit d with fat. I'll give that it a try. I have notice something that looks like oil after a bowl movement. I'm a little confused tho because my liver book stresses not eating dairy, glutin, or red meats, and says to avoid fatty foods. I am scheduled for another colonoscopy on 8/1 I will ask my doc about taking ox bile.
bubba29 said:
you are correct about fat absorption. that is why i asked about diet. something i suggested on another thread was an ox bile supplement which helps people digest and absorb fat when they have problems with having enough of their own bile for this process. this is very common with people who have had their gall bladder removed. also as an aside, vitamin D is a fat soluble vitamin which means it needs to be eaten and absorbed with fat for the body to be able to utilize it.
fat is a very important component of diet. it is no less important when we have problems digesting it.
njzuk said:
I know exactly what your talking about. Before I had my ERCP at the mayo clinic I suffered from every symptom out there. I would get severly itchy, tired all the time, jaundice, I would also get the rushes you had mentioned. I would get them at random times but it seemed like it would happen in the shower the most. They would be so bad that I would almost fall over. At mayo the opened up a dominant strictuer that was 9cm long. One that my previous doctor said did not exsist. Do not be affraid to get second or third opinions it may just save your life or at least the quality of it. As far as your weight loss and it being related to PSC. PSC reduces the amount of bile in your digestive tract which is used to digest fat. So all the fat your taking in is not being obsorbed by your body. If you take a look behnd you after your done your buisness you will prob see a greasy film on top of the water. thats where its all going. the next best food source for your body is its own muscle. Read about how Malnutrition works that might help to expain. I'm not a doctor Im just speaking from experience. over the past year i have had every symptom imaginable from PSC , and in the worst way. Untill i got help from people that knew what they where doing.
hI Dana, My brother offered to donate part of his liver but my doctor said I couldn't have a live donor because I need all the bile ducts not just a part of a new liver &he said a live doner can't give up their bile ducts or they would die. So basicaly I just wait for the end and deal the best I can. Wish they would do more studies on this disease. there seems to be quite a lot of PSC patients.
danabee said:
Cynthia,
I've never had the adrenaline rush in my stomach. It sounds awful and I'm really sorry you're having to go through this. I do wake up in the middle of the night and have to eat. And it doesn't seem to help much either.
The muscle and bone loss go with a dysfunctioning liver, unfortunately. I still go out and walk everyday. I think it helps me mentally and may help a little bit physically. I don't know. But my hep is a big proponent of exercise. So I get out there and move. Walking is just about the best exercise for me. Other things will give me big muscle aches and knots. I'd like to swim but I know it'd be bad for my skin.
I take a LOT of vitamin D3. At least 4,000 units a day. I'm going to up it to 10,000 this week. I have osteopenia but not osteoporosis. And I think the weight-bearing exercise can help with this. I also take calcium, 1,000 mg a day. I had breast cancer last fall and now have to take Aromasin that depletes the body of estrogen. This only adds to the bone loss problem. Your liver can't produce vitamin D anymore, so that's why it's important to supplement it. I found some at Sam's Club that is 5,000 units per tablet, so that's what I'm getting. They wanted to put me on Boniva or some shit like that, but I'm not going to take it. Unless I start breaking bones. I don't think I will.
Hang in there. Can you go with live donor? My doctor recently told me I can go back to that "program." They do lots of live donor surgeries at univ. of colorado hospital.
Hi buba I eat very healthy, lots of fruits, veggies, very little red meat & even less fish. I eat a lot of whole grains, beans, legums, & seeds. I've been told to avoid dairy fatty foods. I do eat yogart in the night or gramcrackers thinking it will stop the adrenaline rush but it doesn't. I'm going to pick up some of that OX bile suppliment and give it a try. Do I have to get a DR. prescription?
Cynthia, there are a number of live donor transplant centers with great reputations. I suggest that you do a little research into them. Even call one of them and talk to a transplant facilitator there. University of Pittsburgh, Mayo, Cleveland Clinic, Univ. of Colorado Hospital. I haven't heard those reasons given for not doing a live donor transplant. Write down your specific questions and concerns. Please don't give up.
I know I wrote something about checking with other centers who do live donor. I have never heard that reason given for not doing a live donor. Call some of the clinics, too, and check the facts with them. Or try to get a second opinion. Especially if you have someone waiting to donate part of his liver to you!