LIVER TRANSPLANT

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bbbbbb
New Member


Date Joined Sep 2006
Total Posts : 3
   Posted 9/16/2006 8:12 PM (GMT -7)   
  hi,  i'm interesten in anyone that went thru  a liver transplant due to cirrotic liver.  i was diagnosed a year and a half ago.  in the beginning i had large volume parenthesis.  5 to 6 liters. that was for about 5 mos. i havn't had one in almost a year.  i'm on the transplant list. the dr. told me he had good news and bad news. the good news was that i was on the transplant list. the bad news is that i'm on the very bottom.  i just want to know what to expect down the road.  if any one has any financial advice, it would be appreciated.  i'm on disability, and only have medicare.  i'm 51, single and conserned about the financial future.  also my long term partner of 25 yrs.  i know he will stay with me,however,  how can i ease the burden for him?  any ideas? physically what can i espect? thank you, bbbbbb   
hi, im new to this site.  i have been diagnosed with the beginning of stage b cirrohsis.  i have been on the transplant list for about 6 mos.  i don't have hepatitis however, cirrhosis due to alcohol comsumption.  i am 52 yrs old.  i have had a head trauma injury that lead to my disability. for about 6 mos. i had large volume parensentisis about every 4 to 6 weeks.  the last 5 mos or so i have had none.  i guess the direutics are working.  my last blood work was fine, no elevated amonia levels(although at one time they were high).   i'm also in dilantin for seisures due to accident.  i'm  wondering if any one can tell me what to expect. the physical effects, side effects of any medicatations that i may  have to take.  i'm on disability and i make to much to apply for medicaid, however the only insurance that i have is medicare.  any insight into what i can do about the large bills looming ahead?  any advice would be welcome.  not knowing is nervre racking.  thanks again, bbbbbb


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 9/16/2006 11:22 PM (GMT -7)   
welcome bbb,
Im so sorry about what your going through,,,,im sure someone can give you some ideas about what your going to go through,,,in the meantime,please shorten your signature,,,the forum rules only allow 10 lines,,,
19. No lengthy signatures. Limit signatures to 10 lines or less. Moderators will edit and/or remove signatures that are too long.
thanks and hope someone answers you soon.
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/17/2006 4:18 AM (GMT -7)   
http://health.groups.yahoo.com/group/livercirrhosissupport/

Hi B,
Above it a very good link to a yahoo support group that I know will be able to answer a lot of the questions and concerns you have right now. I am not facing what you are, but could be in the future, God willing I won't. I hope this will be of some help to you.

God Bless you,
Judy
"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."



szdancer
Regular Member


Date Joined Jul 2006
Total Posts : 20
   Posted 9/17/2006 7:40 PM (GMT -7)   
Hi bbbbbb,
 
I am very sorry to hear what you are going through.  On a better note... congrats on being listed!  It might be a long wait but getting on that list is a tough battle.  I think that that can give you a lot of hope!
 
I am 26 years old, newly married, a performer, and my fathers primary care giver.  My dad is 61 and was diagnosed with end stage liver disease due to alcohol almost a year ago.  He is now 10 months sober and we are so very proud of him!  It has been a very tough year for all of us.  His suffers from assities, getting tapped every 3 to 4 weeks, 9 to 15 liters.  He also suffer from encephalopathy, varices, depression, and malnutrition.  In June he took a terrible dive.  He was in the hospital for 2 months... in ICU on a ventilator and feeding tube in renal failure. (the worst days of my life)  He actually became so weak he could not stand up, walk, feed or dress himself.  The Dr.s told us that this was the end of the road, and to everyones amazement he slowly made a come back. 
 
We were at UMDNJ for transplant evaluation and long, long, long story short he was rejected due to cardiac.  My brother and I were not okay with that and decided to send the Dr.s at Mt. Sinai and Colombia a personal letter asking them to see him immediately.  To our surprise the contacted us the next day saying they we very touched by our letter and to come see them that week.  So, that is where we are now... going through the evaluation process once again.  Our goal is to just get my dad listed.  We will do anything and everything it takes. ( I am learning that everything in life is negotiable )  Once he is listed it will be up to the powers that be, but until then we will fight.
 
My dad is on aldactone, lasix, lactulose, midodrine, xifaxan, and a multi vitamin right now.  The meds have changed so many times I can't even count.  I have found so much comfort and knowledge in this web site... I hope you do to.  All of the people here are wonderful and willing to help in anyway.  Knowledge is power and being here has helped me in ways you can't imagine.  My best advice to you is to communicate and love your partner.  It is a tough road on both of you.  Try to listen and understand each other.  When things get stressful patients run short... I check myself at least 10 times a day.  You will get through it and so will your partner.  COMMUNICATE and LOVE each other all day everyday.  We are here for you.  I hope this helps a bit.  Keep in touch.  Wishing you a sunshiny tomorrow.
 
Samantha
 
P.S.  What's your MELD score?

bbbbbb
New Member


Date Joined Sep 2006
Total Posts : 3
   Posted 9/17/2006 9:26 PM (GMT -7)   
thanks for the replys and advice, will shorten my name to b. samantha i don't know for sure my meld score.it is the lowest. i believe it is 8. if your dad is malnourished try the the slim script shakes. there for diets,however,there full of protien and vitamins. i use milk instead of water. you can mix them up in a blender and add fruit. there easy to gulp down. www.slimscript.com, or 1-800-367-9382. thanks again to all.b
hi, im new to this site.  i have been diagnosed with the beginning of stage b cirrohsis.  i have been on the transplant list for about 6 mos.  i don't have hepatitis however, cirrhosis due to alcohol comsumption.  i am 52 yrs old.  i have had a head trauma injury that lead to my disability. for about 6 mos. i had large volume parensentisis about every 4 to 6 weeks.  the last 5 mos or so i have had none.  i guess the direutics are working.  my last blood work was fine, no elevated amonia levels(although at one time they were high).   i'm also in dilantin for seisures due to accident.  i'm  wondering if any one can tell me what to expect. the physical effects, side effects of any medicatations that i may  have to take.  i'm on disability and i make to much to apply for medicaid, however the only insurance that i have is medicare.  any insight into what i can do about the large bills looming ahead?  any advice would be welcome.  not knowing is nervre racking.  thanks again, bbbbbb


bbbbbb
New Member


Date Joined Sep 2006
Total Posts : 3
   Posted 9/17/2006 9:46 PM (GMT -7)   
how do i change my user name from bbbbbb to b as suggested?
hi, im new to this site.  i have been diagnosed with the beginning of stage b cirrohsis.  i have been on the transplant list for about 6 mos.  i don't have hepatitis however, cirrhosis due to alcohol comsumption.  i am 52 yrs old.  i have had a head trauma injury that lead to my disability. for about 6 mos. i had large volume parensentisis about every 4 to 6 weeks.  the last 5 mos or so i have had none.  i guess the direutics are working.  my last blood work was fine, no elevated amonia levels(although at one time they were high).   i'm also in dilantin for seisures due to accident.  i'm  wondering if any one can tell me what to expect. the physical effects, side effects of any medicatations that i may  have to take.  i'm on disability and i make to much to apply for medicaid, however the only insurance that i have is medicare.  any insight into what i can do about the large bills looming ahead?  any advice would be welcome.  not knowing is nervre racking.  thanks again, bbbbbb


judyinky
Regular Member


Date Joined Aug 2006
Total Posts : 254
   Posted 9/17/2006 10:10 PM (GMT -7)   
Hi B,
It's Judy. To change your user name you go to the top of this page and click on control panel. It should give you directions as to how to change it. I hope you have found some resourses that you are looking for. There are many support groups on Yahoo for liver disease, cirrhosis and transplants.
To access them you can go to yahoo and then type in yahoo groups, and do a search. You may already be familar with this process, but I wanted to be sure. You do have to have a yahoo ID, but that is simple and when you go to yahoo, it will tell you how to do that.

A little about me. I am 54, widowed, but have a partner, live in Louisville, KY. I I have autoimmune hepatitis. It is neither A B orC hep. My immune system has attacked my liver. Autoimmune disease in not rare, but autoimmune hepatitis is. It does lead to cirrhosis if not treated. Mine was caught in time to treat it and we are in hopes of a remission. My biopsy shows a lot of damge to my liver and some scarring, but is not yet into cirrhosis.
I am taking an immuno-suppressant, prednisone, and have been since April when this was diagnosed.

I hope to get to know you. I am new here too.

Judy
"Hope is seldom found in the things we can see;
it is the sweet fragrance of grace."



HepBGayMan
New Member


Date Joined Jul 2006
Total Posts : 6
   Posted 9/28/2006 7:47 PM (GMT -7)   
HI B....
I believe you and I have many things in common. I have been HepB positive for 2 1/2 years and on the transplant list for 2 years. My meld score is 14. My meds include lactulose, lasix, aladactone, hepsera, baraclude, nexium wellbutrin, a multi-mineral/vitamin and an additional dose of zinc sulfate. My health is relatively good considering the circustances. I do tire very easily and if I am on my feet for an extended time the swelling in my feet and legs is exhausting...I truly know the meaning of the word fatique. I have been on disability for almost 2 years. I have Tennessee's state insurance TennCare, and will be eligible for Medicare on November 1. I too have questions about the cost factors of the meds I willl have to have in the future and about the aftercare I will require following surgery. It is going to take a lot of money. I would welcome the opportunity to exchange information with you as We find out more. My email address is borobuddy@myway.com. I hope to hear from you soon.
HepBGayMan

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 9/29/2006 11:06 AM (GMT -7)   
you dont have to shorten your actual name,just your signature lines,,please try to limit it to 10 lines,bbbbb,,:)
hi hepb, hopefully you and b can compare notes and help each other find some answers :) welcome to this site,,,alot of support can be found here ,,good luck
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 

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