questions for doc

Question

I have stage 4 cirrhosis advanced scarring still compensated with a MELD score of 6. Treated 3 times never successful with my last breakthrough at end of 38wks on triple with incivek, in Sept. 2012.
I eat fairly healthy and drink healthy, non smoker and of course no alcohol since diagnosed 9yrs ago. 
I am in pretty good shape considering, but I have been noticing my toes are turning purple at times. Never been diagnosed as diabetic ( yet. )
I go see my hepa next month and I am working on a list of questions to have ready for my doc and thought I would see if anyone here had any advice or questions I should be asking my doc. Of course I will be telling him about my toes but if anyone has any other questions they can think of I would appreciate any input.
thanks

also, I am on a trial list in case something becomes available locally I might qualify for.

gene53 · Answer

Dee, so far no swelling, red spots or anything else and when my toes turn red/purple I elevate then and the color comes back so not sure whats up with that yet. It is unfortunate tx doesn't work for all of us but for those of us in that predicament there is nothing we can do but deal with it as it comes. I'm very glad to see more and more who do beat this and very happy for you as well...
thanks again

nursegill, thanks for the info and I'm glad your dad has someone like you to help him through this and good luck to you and your dad.

rpooo  like you I have been making many lifestyle changes, exercising, and hoping for the best, good luck to you too

rpooo · Answer

The liver has well over 500 functions and is known as the laboratory of the human body. The liver is tied to all bodily processes because it is responsible for filtration of all incoming foods and fluids. The body relies upon the liver to remove toxins so that nutrients supplied to the body are pure and capable of providing nourishment. When the liver fails this is why people expire! 

Randy

nursegill · Answer

I use a machine on my dad call neurocare. This helps to keep his blood flowing to other organs. I use it once a day for 45 min. I think it is keeping my dad alive. He has stage 4 and in May was told he had less then 6 wks to live. I swear by this machine. He is on no meds just vitiams. His kidneys are fine. I was told that you do not die from the Cirrhosis you die from the lack of blood getting to them.

Dee1956 · Answer

Hi Gene before I got to SVR with the Incivek I had the cyroglobulinemia (sp?) and it caused me to have swelling in the lower legs as well as red spots.  I did not have the purple toes however it sounds like Advocates husband had something similar to what you are experiencing
I am really sorry that the latest tx did not work. I know what it feels like.
My best to you
Dee

gene53 · Answer

Thanks for your info Advocate. I read up on the C & V last night so I will be having a few more things to talk with my hepa about.
Unitl now I haven't had any of the other sx you mentioned but I suppose there coming soon enough. 
Thanks again I really appreciate it
Gene

Advocate1955 · Answer

Hi Gene,
There are a few things related to having Hep C and Cirrhosis that may be causing your purple toes:  Cryoglobulinemia and Vasculitis are the first hat come to mind.  My husband has lots of skin and vascular issues that are related to his Hep C and Cirrhosis, including purple fingers, red/purple spots and blotches on his lower legs, and veinous insufficiency in his legs which causes some swelling and purple bruising on his lower legs and feet.  It's definitely a question for your hepatologist in March, or if you are concerned, ask your PCP.  He/she may not know about some of the extrahepatic manifestations of Hep C and Cirrhosis though.
Advocate1955

gene53 · Answer

I reread your post. I have already been seeing a hepa for quite some time now but I did find a few questions from your post I will be asking. My main concern now was because my toes have been turning purple and I was concerned about poor circulation or early stage of diabetes caused by my cirrhosis. Since my next hepa appointment is a month away I will probably see my family doc about this if it persist. 
thanks

gene53 · Answer

Wow I don't know how I missed that but " Dah " as my kids would say...
looks like lots of good questions there so I will go back and read more thoroughly. I got kinda nervous when I noticed my toes last night and thought I would check in here for additional info before my doc visit, so thanks a lot and good luck to you.
Gene

campqueen · Answer

hey there...I asked the same basic question about 4 days ago, a few posts back..see "prepping for my appt with hepatologist"....but I don't have confirmed Hep C....just cirrhosis....its a beginning until the "experts" on here get back to you  
Bev