in the dark path of ambiguity with more questions

[Roxanism]

  

     Today I had a half hour telephone appointment with the gastroenterologist who is still the only doctor in charge of my case.  But not for long.  What I retained was this, I documented the rest.

1)  the kidneys are now compromised possibly from the ascites

2)  there is fluid in my lungs and chest cavity. From the ascites.

3)   I am somewhere in the middle between compensated and decompensated  stage 4 liver disease.

4)  I am somewhere in the middle regarding normal and refractory ascites.

My MELD scores are still low, now at 11.  
My Child Pugh number is 8.. he really had to look that one up.

The entire time I had the distinct impression that he was looking at my most recent labs for the first time, and interpreting them as he went.
what they meant.
Nothing was decided ( as usual) he said he will call me again on Wednesday.. He maintains that the TIPS seems to be the best way to go. Though he admitted that he knew nothing about the procedure until recently, and  is not sure where to can find a specialist to do it. But  he'll "look into it"

He said there was once concern with the  TIPS procedure, and that is that one of the side effects  of diverting the blood flow, will render the liver still more vulnerable to toxins, so again, he puts the remotest possibility of treatment for the Hep C as the last things he is concerned about. For fear of the toxicity of the drugs involved.
Unfortunately I also am starting to see the futility of the treatment , even though it was the  primary reason for going to him in the first place. All this would perhaps be helpful and informative for me to hear coming from a Liver Specialist.
My decision was made even before the call. I am seeking a different doctor as some of you have recommended. In fact any other Medical Institution besides Kaiser.
  

    

[Advocate1955]

Sorry, here is the link:  http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390

[Advocate1955]

I'd like to recommend that you also post in the Cirrhosis of the Liver forum.  There you will find others who have both compensated and decompensated Cirrhosis.
Absolutely I agree that you need to be treated by a hepatologist.  A gastroenterologist does not have the specialized training needed to care for someone with advanced Cirrhosis.
Advocate1955

[hepcandme]

You should remember that Kaiser is a partnering organization with UCSF - arguably the best liver specialists in the country.
I complained endlessly about my Kaiser doctor but now he is kind of a background player in my treatment and, well, I am loving Kaiser right now because they are paying for my Very expensive treatment
Ask your doc for a referral to the docs at the transplant center at UCSF, sooner rather than later.
I would do this for any surgery that was proposed and it sounds like your doctor would willingly oblige since he is l\wondering who does the the TIPS procedure
It sounds as if the ascites is serious and it should be addressed by the experts. It also sounds to me (even though I am not qualified to give a medical opinion about this) that the complications from your liver disease would need to become more stable before any doctor would consider treating you for Hep C

[Roxanism]

oops, my error. He said that the compromised kidneys are possibly a side effect of the diuretic.."by the way, he said, are you still taking them ? how much are you on now ? have we increased them yet ? "