Have some questions...

[shesam]

I need some help

by shesam, Apr 08, 2014
I have several questions:  I hate the taste of lactalose. Is there anything out there that has same results with out that awful sweet taste?  Do u mix your lactalose with anything to hide the taste?
2 nd question:I have untreated cirrhosis that was diagnosed about a year ago. Came as a result of Hep C. My dr at a prominent medical center in Ohio had me wait all of 2013 for the FDA approval of a new drug.  Now in March of 2014 he says they are currently getting about an 80% success rate with a combination of Semprivir and Solvadi. Without the use of ribivirin or interferon. Them he says he has heard some good things about one of these two combined with a new one-and in trials it has 95% success rate. So now he wants to wait on more trials to come in with that!  He won't put me in a trial because my BMI is too high( nice way to say obese).   Says my labs are "stable" although there are MELD markers that are out of normal ranges. So here's the question:  should I wait because I'm stable or seek out another facility that may start treatment???  I guess that's all I have for now. Please reply if you can

[HectorSF]

From what I have heard over the years in the transplant community the Cleveland Clinic is one of the best liver transplant centers in the country.
I am not sure why anyone would need to look further.
Is there a reason?

Of course I only have experience with my own transplant center, over the last 7 years and my two months at Yale-New Haven Hospital in Connecticut. My transplant center saved my life and the lives of many of my friends so I am biased as far as centers here in the Bay Area.

Best
Hector

[shesam]

Thx for your well thought out and reassuring answer. It calmed me down!  Do u know of any other reputable liver transplant centers in ohio besides Osu and Cleveland clinic?

[HectorSF]

I would ask your hepatologist about Kristalose. It is a dry powder form of lactose that comes in paper packets. I would just mix it in water which has very little taste. If you mix it in fruit juice you won't even taste it. It is more expensive than lactulose but if you health insurance covers it I would at least given it a try. I hated the taste of the lactulose I had to take 3 times a day and found  Kristalose so much easier to use on a daily basis.

"should I wait because I'm stable or seek out another facility that may start treatment?"
Only a hepatologist that has all the facts about you as an individual can answer that. As long as they are monitoring your condition and your cirrhosis is relatively early, compensated and stable waiting for months won't make a difference.
Please release that it is not your doctor's decision to not put you in a particular trial. Trials have exclusion criteria. Apparently the trial excludes candidates with BMIs over a certain limit. This is not uncommon. It is the drug company that is excluding people because they need to have certain criteria in order to prove the purposes of the trial. Unfortunately many people are excluding from trials. Trials require protocols in order to be scientifically valid. Especially in early trial phases when they are trying to prove treatment is effective and safe. Trials only pick people who are most likely to have good results in earlier phases. Treatment naive, no other medical conditions, no diabetes, no liver cancer, etc etc. Many times no cirrhosis especially in early trials.

"seek out another facility"
Since you have cirrhosis the only type of doctor that should be caring for you is a hepatologist at a liver transplant center. Only a transplant center can evaluate your liver disease and provide the proper and safe hep C treatment to prevent the chance of further damage to your liver. Older hep C treatment could cause decompensation and even liver failure in some patients. Not something any of us would want. Plus in the event some unforeseen turn of events were to happen a transplant center can list you for a life-saving liver transplant.

Best of luck to you!
Hector