esld & kidneys

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janeyj
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/31/2010 3:34 PM (GMT -7)   
Hi all, am new to this forum but did discover it last year when my dad (69 years) was diagnosed with esld. he has ascites and is having 12-14litres drained every 3-4 weeks. the dr's say that his kidneys are struggling though the liver not too bad? is anyone familiar with this diagnosis
thank you

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/31/2010 6:03 PM (GMT -7)   
Hi, Janey and welcome!  Glad you decided to join us.  In regard to your question, kidney failure does sometimes accompany liver failure.  Is your dad on diuretics?  They can cause problems.  I cut mine down to a minimum since my creatinine started to rise and I've never had a problem with my kidneys previously.  Is your dad being seen by a hepatologist?  Is he a candidate for liver transplant?
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/31/2010 6:22 PM (GMT -7)   
Hello Janey and welcome to HealingWell. Sorry that your dad has esld. Yes, unfortunately liver disease will effect the kidneys at some stage. If he's on diuretics they can effect the kidneys also.

Unfortunately everyone here is dealing with liver disease or has dealt with in one way or another. So you are not alone. We have lots of wonderful members that are so supporting of each other. We are glad that you have joined our cyber family.

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.


janeyj
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 4/14/2010 3:50 PM (GMT -7)   
Hi and thank you for your replies, dad has just been in Kings college for a week for an assessment and we had the chat with specialist today. basically transplant not an option(70 yrs in June) and he said that either leave things as they are, ie drained every 4 weeks or a possibility of TIPPS - shunt, but he didn't really seem too keen on that as risks are quite high and only 60-70% of controlling fluid. has anyone had this procedure??

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/14/2010 5:14 PM (GMT -7)   

Hi, Janey!  Thanks for the update.  Yes, our member Rick had the procedure and has done well with it.  He feels it has given him quality of life and he no longer has to be drained.  Hopefully, he will see your post.

Hugs,

Connie


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


arneeb
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Date Joined Nov 2009
Total Posts : 2350
   Posted 4/14/2010 6:30 PM (GMT -7)   
Mike had a Tips shunt put in 5 years ago... and before it he was in bad shape... on the verge of dying... even now he hasn't gotten as bad as he was... they say the shunt was blocked in January.... but still not as bad as he was five years ago... his quality of life drastically improved after the shunt... and in fact if he hadn't been so stupid as to drink again ... forseeably it could have lengthened his life for a few more years... now they say a couple months.. but who knows... I think as stable as he is... probably will drag out longer... which seems like a good thing for some... seems like eternity to me... hope that helps..

janeyj
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 4/15/2010 1:39 PM (GMT -7)   
Thanks, it is great hearing from others who have had this procedure as it seems quite daunting ( understatement!). it's not def if my dad could have it as they haven't seen if the heart could handle it yet, next step if he considers it. forgot to ask yesterday how many of these Tips the specialist has done, we're blessed to live in London uk and have Kings college about 6 miles away, is this mainly a USA based forum, just wondering how different countries view these things.
Praise God for this forum
Jane

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/15/2010 3:48 PM (GMT -7)   

Janey, we do have members in the UK and other countries.  :)

Hugs,

Connie


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


janeyj
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 4/17/2010 2:13 PM (GMT -7)   
Hi there rick

a big thanks for all that info, really helpful and i'm glad to hear that it has helped, i'll pass it all onto my dad

bye for now jane

lovingson
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 4/18/2010 4:44 PM (GMT -7)   
Hello all,
My name is Chris , we have been going through a lot the past 4 months, My mother of 74 as of yesterday was diagnosed with Primary Biliary Cirrhosis at an advanced stage. Her abdomen swelled( ascites) 2 days after Thanksgiving,2009 . After seeing the family doctor and going to a gastroenterologist , they ordered blood work and a cat scan of the abdomen. she tested positive for AMA titer 1:80 for PBC

She has had PBC probably for many years because she was dealing with CREST and Raynauds syndrome autoimmune arthritic conditions, which i have come to learn is an overlap syndrome. Most symptoms, itching jaundice,bleeding she has never exhibited where many others do with liver disease. Although the chronic dry eye and dry mouth has been there for about 8 years. When the ascites appeared they dosed her with spironolactone. which took care of the ascites for about month and half. Then she starting getting more fluid in the belly. They added lasix to the mix and that helped for a bit.

We saw a PBC specialist at Temple University in Philadelphia PA and told us transplant was the only solution. We then went to University of Penn because they were medicare approved .Temple's s transplant program is too new to transplant the elderly( not medicare approved).

What we found out was her MELD score was very low abut an 8 on a scale of 6-40. They said they would
entertain a transplant review for her but there was disconnect with her complications of ascites and her decent blood work and low meld score, so she would wait years for a liver.

Anyway we got an appointment with Thomas JEfferson University for a third opinion with their liver medical Director. While waiting for the appointment I was in communication with a Professor and Hepatologist of liver Diseases of MT Sinai Medical Center in NYC
he was very kind to review my mothers case through constant email back and forth. He opened my eyes to a lot of myths and realties in regards to liver disease


For those wondering about ascites and TIPS, according to this doctor people can live many years with these complication . People with Meld scores of 15-18 have lived for years .Having the multiple paracentesis and TIPS procedure can benefit a lot especially if their is esophageal bleeding . Some of the Doctors patients at MT Sinai had TIPS done in 1991 and are still alive today doing well. OF course a lot depends on the patient but it is possible!

I also spoke to a woman in support group whose mother is now 69 yrs old and had The TIPS done 20 yrs ago , she is still doing well, lactulose and another drug which escapes me helps with the ammonia levels.

When we went to the Jefferson their suggestions was the same as the professor.at Mt Sinai... treat the ascites and she should be OK! first paracentesis and diuretics and the last resort TIPs. They have had patients like my mother presenting ascites with low meld scores and live 8- 10 years or even more.

The doctor also said AGE is not a contraindication for transplant however ( for those of you have elderly patient)
if she gets a lot sicker with the next couple of years or presents liver cancer your meld score jumps high,the wait for a liver is shorter.
My mother went through all the cardiac tests, and now will do the endoscopy to see if there are varices and colonoscopy as well.

The Jefferson Hospital Doctors says We do transplant for 71, 72, yrs old with sweaty palms, when you are past 70 they are very careful for transplant( will the quality of life be better after transplant for an elderly person?, will you trade on set of problems for another,Liver transplant is not without possible complications,if one can survive the operation, there might be rejection of the liver or complications of immunosuppressant drugs
and other risks like increase risk for infection etc.


But if you have not had cancer, strokes, mini strokes , or heart attacks you can be a candidate for transplant.

So those who are dealing with the elderly be sure to ASK a lot of questions and get multiple opinions
also psychologically s someone n their 70 ready to deal with a major surgery like transplant
some yes some no

I believe in the remarkable liver and its regenerative abilities. Some of these docs have patients living on 5 % of their livers. , diet helps, low stress and anxiety,
good mental outook all helps with quality of life, and especially love!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/18/2010 6:00 PM (GMT -7)   

Lovingson, welcome to the forum.  Thank you for sharing all the info you have discovered!  That is the best thing you can do is become educated about the disease.  I also applaud you for getting 2nd and 3rd opinions.  With her current MELD score, she will probably outlive the need for a transplant...unless things go downhill quickly.  BTW, I also have Raynaud's and a low MELD score.

Hugs,

Connie


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


lovingson
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 4/18/2010 6:34 PM (GMT -7)   
Hi Connie,
Thank you for replying! Im glad to hear you have a low MELD score too! Have you been diagnosed with PBC? How long have you be dealing with Raynauds, im assuming you have hepatitis( autoimmune?)HOw long have been dealing with the disease
Anything i can do to help with you or anyone on this forum i will share what i find and learn

Hugs back to you!

Chris
P.S. where are you from?

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 4/18/2010 6:52 PM (GMT -7)   
Not trying to throw a wet blanket on this, but at Mass. General, 70 is the threshold. Any older and no transplant. I was told that after 5 years in the program, a low MELD score and thinking I'd suffer forever. My hepatologist told me that many people my age (59 at the time) live for a long time without their score high enough to get up on the list. Then he said that if I reached 70, I'd be taken off the program, because they save livers for younger patients. I suppose every transplant hospital has their own guidelines. Good luck. **David**

lovingson
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 4/18/2010 7:19 PM (GMT -7)   
Yes David, each hospital and Transplant center is different( MT Sinai in NYC wont list a patients unless thier MELD is 15 or higher) Some other ones in NYC and California 25 or higher , however I just met a 75 year old woman who was transplanted at Einstein in Philadelphia when she was 73 yrs old
She was severely jaundiced and had a higher MELD score, she is doing well after the transplant
it really depends on how sick and how fast your score goes up

Here is an excerpt from an article from UCLA transplant center

"Our second question regarding advancing recipient age requires some diplomacy. Despite our selection of age 40 as “older” recipients, I can report that in Southern California 40 years old is still considered young. In fact, many of our recipients are now in their 60s and 70s, and a report regarding the very good outcomes that can be on obtained in those groups of selected older patients is being prepared at UCLA. Our oldest liver transplant recipient at UCLA was 82 years old at the time of her liver transplant and is still alive and well today. We have clearly entered not only the era of extended criteria donors but also extended criteria recipients.

How are you Dong these days Dave , how old are you now?
Take care,
Chris

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/18/2010 7:25 PM (GMT -7)   

Chris, I don't have PBC or AIH.  I have hep C (diagnosed in '93) and cirrhosis and am a liver cancer survivor (4 yrs. next month.)  I currently live in FL.  I am followed at Mayo here.

Hugs,

Connie


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


lovingson
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 4/18/2010 7:37 PM (GMT -7)   
GOD BLESS YOU CONNIE!
The Mayo is wonderful I hear!
My cousins live in Pembroke Pines and Sunrise

My wifes sister and her kids are in Tampa, actually Odessa, ill be there in July for my nieces wedding
my wifes other sister father in law got hep c from blood transfusion and had a liver transplant about 8 years ago

By the way what are you doing for nutrition as far as meals and also any supplements like ensure
or amino blends, we are keeping my mom low sodium, more frequent mini meals

any suggestions...were open to new ideas

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/18/2010 9:23 PM (GMT -7)   

The most important thing I do nutritionally is eliminating beef from my diet.  It's the most difficult protein for the liver to process.  I'm not perfect...I might have it once a month when I'm craving variety...but I'm not much of a meat eater to begin with.  I have upped the fresh fruits and veggies and drink a lot of spring water.  I also keep to a low-sodium diet.  I take a multivitamin w/o iron, vitamin C and vitamin E daily, and that's about it.  The most important thing I do for my liver is no alcohol intake; however, I had been sober in AA for 7 yrs. when first diagnosed with hep.  Now it's 23 1/2 yrs. of continuous sobriety.

Hugs,

Connie



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


lovingson
New Member


Date Joined Apr 2010
Total Posts : 5
   Posted 4/18/2010 10:27 PM (GMT -7)   
Sounds good, my mom does not each much red meat either, she mainly sticks to chicken or fish , she eats vegetables including escarole and ocra, beans( we are Greek they are big on their veggies) , fruits, she does not drink soda, she stopped all sweeteners, and she is following the low sodium diet. she drinks water or hot tea.She takes vitamin b and c too as well as 50,000 units of vitamin d weekly to protect her bones, she is borderline osteoporosis more osteopenia. She has a bit of muscle wasting they say ( but i think its more the diuretics draining fluid from everywhere )

As far as alcohol my mother was diagnosed with an allergy to alcohol when she was 23, after 3 times to the emergency room after drinking a cocktail passing out
she literally she would go into the bends. Thank God alcohol is not an issue here

Great to hear that you have been sober for that many years, fantastic!
'Hugs back,
Chris

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/19/2010 11:03 AM (GMT -7)   

Chris, I have an allergy to alcohol, too.  I break out in a drunk.  turn

Hugs,

Connie


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

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