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BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/7/2009 7:47 PM (GMT -7)   
I am trying to find out what to expect with this .
So any input will be welcomed
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/7/2009 8:45 PM (GMT -7)   
BaBa, welcome to the forum.  Is it you that has been diagnosed with ESLD or a loved one?  I suggest you start by reading the educational thread in the folder Hepatitis Resources at the top of the page.  There is some very good information in there.  If you'll tell us a bit more, we have many knowledgeable and supportive members here.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/8/2009 9:50 AM (GMT -7)   
it is me. as of oct 08 . i was told maybe six months. well that time has passed. i do everything the docs want me to do.i have days that i cant wake up then i will have days i cant sleep. i have alot of pain but im trying to deal with it without pain meds. as im trying to not add any stress to my liver. im confused i get blood test every week and it seems to me that one thing improves and something else falls apart. my concern is that i want to know which symptoms that i should be concerned about. i often feel that im lost in this world of unknown. i have good docs ,im on to me alot of meds, and that list keeps growing.the best of support from family and friends.since oct i have lost 70lbs at first that was welcomed now it is just plain scary im losing about 3 lbs a week.my amonia levels have only been high 2 times,i cant matain a nutrational level im on beta blockers,spironolactone,lactlose,and 14 other meds. guess my big question what are the stages of this mostly what red flags should i pay attention to asap. my docs are very help full but there never seams enough time to answer the what am i facing questions. dying dosent brother me its what am i going to put my family and me thru .i will fight this to the last breath just need to know about thismore so i stand a chance
 

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/8/2009 10:37 AM (GMT -7)   

Baba, thank you for the additional information.  I'm sorry you are having to go through this.  The best suggestion I can give you is to read the educational thread, as I mentioned in my previous post--especially Stages of ESLD. 

I would go ahead and take the pain meds as necessary.  They are not going to harm your liver any more than the other meds you are taking, and there is no prize for suffering.   Has a transplant been mentioned?


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/8/2009 12:14 PM (GMT -7)   
i was told because of my general health i probly wont be able to get a transplant. that is why i am going to the mayo hoping they can help me better.and i did make an appointment for the doc to get pain meds this morning so i will have them tonight.thank you for listening.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/8/2009 1:49 PM (GMT -7)   

BaBa, I go to Mayo Jacksonville!  They are fantastic.  They literally saved my life, as I had inoperable liver cancer when I first went to them.  You made a wise decision.  And just let me say that if they don't accept your insurance or you have none, go to Mayo's financial offical and ask for the application for charity help.  Since '95, they have been picking up the balance of my bills, after what they get from Medicare.  If you have any questions about this, you can e-mail me.  (Just click on my name and it's in my profile.)

I'm glad to hear you are getting more pain meds.  Keep us posted!


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/8/2009 11:04 PM (GMT -7)   
rick, thank you so much. i have done what you did and it realy put me in a place mentaly i just didnt wanta be.i need to hear from survivors and thrivers. im so glad to here that the pain gets better and even more excited about the hope of getting back mucle mass.thanks again

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/9/2009 6:55 AM (GMT -7)   

Yes, Rick has come a long way and so have I, although I still have hep C and cirrhosis.

BaBa, which Mayo are you going to?


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/9/2009 5:10 PM (GMT -7)   
hello i am coing to rodchester
please let spelling not count
im am looking forward to going i have an oncolgy nurse who is going with me. she will make sure that we get the answers we need. i just came from my gi who says that my musle mass is depleating to rapidly. i am following a diet for that and it is still losing. i spend most of my day outside and my bulirbun levels are climbing not rapidly but they are going up. other than sun and vitiman d do you know of any other ways to lower it.

BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/9/2009 5:18 PM (GMT -7)   
hep93,
im sorry that you have this liver diease. do you plan on a transplant. and has anyone ever told you why( if they know that your liver never can get wel)l , why do you have to be near dead to get a new liver . just seems to me that when your body is healther it would be an easier recovery.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/9/2009 8:24 PM (GMT -7)   

I have never been a candidate for transplant as my labs have always been fairly good, even when I had liver cancer.  I have never been in liver failure.  However, the surgeon told me that if the cancer came back in the remaining left lobe, I would need a transplant.  Conversely, my hepatologist said that they would catch it early enough to be able to eradicate it surgically or by other means.  I have blood work and a scan done every 3-4 months.

I'm sorry, I can't answer your question about bilirubin.  While mine is a little elevated, it's never been really high.  In fact, none of my labs has been off the charts, so lab work doesn't really tell the whole story with me.

Since Mayo Rochester is the original one, they are still first with new treatments, etc.  I had TheraSphere treatment for my cancer, which had never previously been done at Mayo Jax, but had been in use at Mayo Rochester for a couple of years.  So you are in good hands.  When you see the doctors there, they will have you undergo a lot of tests, even if you've had them previously elsewhere.  Be sure to take a list of questions with you to ask them.  That's one thing I truly love about Mayo docs:  They never rush me and always give me as much time as needed to go over test results, their treatment plan, my questions, etc.

The way that transplant is handled now, where the MELD score counts for so much, a person generally has to be within 5 days of death before a transplant will be done.  With the large demand for livers and the short supply of them, they have to go to people who are literally at death's door.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/10/2009 10:58 AM (GMT -7)   
i understand what you are saying . this is what makes this support lined so important to me. a trans plant is probly never even going to be an option for me. and in someways i dont want to go on a list as it would mean i would have to leave home. they dont do transplants in my state. my gi is talking about iv feedings to stop the lost of musle mass dose anyone have any imput on this. thanks for answering my questions,

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/10/2009 9:26 PM (GMT -7)   
Baba, I've never heard of that done for muscle wasting.  I assume it would be in-hospital?  Usually, when people cannot eat enough to sustain body function, such as with throat cancer where radiation leaves burns, G-tube feedings are instituted.  Actually, a procedure can be done where you will have a "button" and can give high-calorie, high protein liquid meals to yourself through a gastrostomy tube.  Of course, this is a last resort sort of thing.  Be sure to discuss the IV feedings thoroughly with your doctor so you will know exactly what he has in mind, how long it would be for, whether it would be done as an out patient, etc.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/10/2009 9:36 PM (GMT -7)   
hey you are so right. i am selfish in the way that i dont wanta leave my family. i certainly need someone to rant. i have this habit of just making decisions with out thinking it through. i have been trying to win this war in one step. now i am going to fight it one battle at a time. and i will keep fighting.i spent over an hour in the docs office today with a 2 page list and left there feeling empowered. thanks for the ranting. keep thriving dtay strong and my prayers to all

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/10/2009 9:50 PM (GMT -7)   
Hello Baba. Welcome to HealingWell.
Rick said it right as rain about the muscle wasting. Like Connie I have not heard of a feeding tube unless the patient is so sick that they can not feed themselves. If it were me or one of my loved ones I would ask my GI doctor for a referral to a Hepatologist. GI's are okay but Hepatologists are the experts on the liver.

I believe like Rick. God is going to take us on his time not our time. What we can do is make the quality of life that we have left as good as possible. That's where eating right and taking meds properly come in. It isn't an easy task by any means to balance them. They always need to be readjusted as things change.

What diet are you following for the muscle wasting?

What state do you live in?

Take care...........thoughts and prayers.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/11/2009 1:43 AM (GMT -7)   
hello , my home is in alaska. the big problem is 30myears ago i had several stomach surgerys. it caused me to have dumping syndrom. as for my diet no red meat.because of the ds i have a low fat , low sugar diet. i mostly get my protein from egg white, cheeses. i am hoping that when i go to the mayo they will be able to better instruct me. i know about the stomach peg . and would certainly do it . today the doc added 5 vitamins that are supose to help me mataine musle weight. i already see a Hepatologist. i see him every 2 months. then i see and internist 2 times a week. they do labs on me every week. but after reading the threads here i think that is excessive. i can say i would like to have any imput on what questions to ask so much of this i just dont know what to ask.like meld score i have not been told what it is. i learnt alot today about my musle mass,i get about 1 1/2 litters of fluid drained weekly. better today i didnt need a drain. thanks again for all your suport and sharing your knowlede it is so very much welcomed.the iv feeding is just in the wings there is now def plans for it , but i have had it before and i was outpatient. thanks again and please if you can think of things i need to know i apperciate. my prayers are with you all

BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/11/2009 11:14 AM (GMT -7)   
i have a question. has anyone figured out what to do about the itching.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/11/2009 12:58 PM (GMT -7)   

Baba, we have a thread on itching if you'll do a search.  Some say that Gold Bond lotion and oatmeal baths are helpful.  I'm not sure if my itching is from liver disease or dry skin, but I find that Dove Cream Oil Body Wash or Dove Pro-Age Body Wash applied with a long handled scrubby is helpful.  I also use bath oil on damp skin after my shower.

With the dumping syndrome, I imagine you have to eat easily digested foods, but is fish and chicken a no-no?  If you can eat these at least 3 times a week, I would think it would help maintain muscle mass.

The MELD score is calculated based on your labs.  If you will look in the Hepatitis Resources at the top of the page, I believe Penny explained it in the educational thread.  It's a combination of serum bilirubin, INR, and serum creatinine.  If a patient is on dialysis, that's also figured in.  Obviously, the higher the score the more one needs a transplant.  I've forgotten how high it needs to be to be listed for transplant, but I believe it's 15 or higher.  Someone here will know.

Congratulations to you on making the decision to take control of your situation!

 



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 6/11/2009 4:24:56 PM (GMT-6)


BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/11/2009 1:15 PM (GMT -7)   
thanks. i will try those creams.
as for my diet i do eat chicken and fish. and i eat several times a day.
as for reading the threads i am just now figureing out how to find them. again thanks . i wished i would have found this web sight months ago

BaBa
Regular Member


Date Joined Jun 2009
Total Posts : 22
   Posted 6/11/2009 10:38 PM (GMT -7)   
i so understand what you are taling about. i too have met alot of wonderful people it just proves that there is always good with the bad its just hard to see sometimes. im sorry you are on so many meds. i will keep you in my prayers. thanks so much for sharing your experinces with me it helps me alot
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