MELD SCORE OF 7

[KERRINGTON]

Hello ! I'm not sure this is the right place to get information, but here goes I am advocating for a 35 yr old nephew who through a routine physical found to he had hep c and most likely contracted it during heart surgery as an infant. This never showed up in prior blood work. Well, they cured the hep c, but he has much liver scarring and he was told there is not much he can do to help himself except have a protein drink at night and get on a transplant list if the MELD score gets to 12. Surely liver specialists can do more than that ? There must be some nutritional guidance or liver health centers around. Basically they have told him to go home and do nothing ! Where do I begin to help ! Thank you !

[AyrshireK]

Hi Kerrington, I see you are in the USA so a lot will depend on your nephews health care insurance I guess. In the UK (where this forum is based) we are very fortunate to have largely free at the point of need health care through the National Health Service. A cirrhosis patient here would have minimum monitoring of an ultrasound scan every six months & bloods every six month - including one for Alpha fetoprotein which is a liver tumour marker. I would think it imperative that your nephew receives similar monitoring especially in light of treated Hep C and cirrhosis both of which can slightly increase the risk of liver cancer.

Your nephews cirrhosis is obviously at the less serious side of things. The MELD score calculator goes from 6 - 40 so with a score of 7 he's pretty low.

He can keep himself fit by maintaining sobriety, eating a good healthy balanced diet - less salt, less sugar and limited/no processed foods. Protein and carbs are important when someone has serious liver disease and i'll ping you a little leaflet we were provided, however, it would be better for him to see a liver specialist dietician for individualized advice.

My husband presented with decompensated cirrhosis in April 2012 - he nearly died from burst varices. Over the years he's had 42 varices banded, was listed for transplant in 2014 but got well enough to be delisted. He's now 60 years old, cycling every second day (200 miles in January alone) and doing relatively well.

Cirrhosis isn't a death sentence. Dependant on symptoms present you can get on fine for years with a cirrhotic liver, it's just a case of looking out for symptoms arising and getting those treated - it's important for example to move your bowel 3-4 times daily to prevent toxin build up, look out for red flag symptoms like jaundice, ascites/fluid build up and bleeding internally (black tarry stools, fresh red blood in stools). These would be a medical emergency and need urgent care.

There are some world leading liver centres in the USA - places like Mayo Clinic spring to mind. I've just read a page froma Pittsburgh hospital about the liver transplant process and they talk of not listing someone unless their MELD is over 15. upmc.com/services/transplan...

Depending where you are the in States there are liver centres but it depends on how your nephews insurance/health care funding is sorted out. Sadly, I don't know how the system works I just know that we get several members on this forum and the British Liver Trust one who are battling through the US care system for appropriate monitoring etc.

All the best, Katie

[KERRINGTON in reply to AyrshireK]

Wow, Katie, what a wealth of information you provided. I had spotted the pamphlet first, then this info. How wonderful that your husband escaped transplant surgery. He is lucky to have had a good health team. My nephew was not made aware of symptoms to watch out for, and that by making sure that the healthy part of the liverworts optimally he can keep his MELD score down . I can't believe the lack of interest his hematologist here in the US has shown. I guess we will start by calling centers who specialize in liver problems, and see what kind of nutrition programs they have, if any. Oh, I goofed, my nephew's MELD score is 12, not 7, and at 15 you're listed. On the plus side .... he is very healthy, never gets sick. Thank you Katie !