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!