And now, we wait

[hepcandme]

I had a much anticipated consult with my Doc yesterday about what is next for me with Hep C and cirrhosis. A "little" Ascites 3 months ago (though you probably wouldn't notice and not enough to warrant Paracentesis) and Edema that has gone away entirely. 2 months of detox diet, more exercise, no alcohol or Advil. (Most) Blood tests are all close to normal and continue to improve steadily and MELD dropped from 12 to 10. So, the problem is, what to do next? I geared myself up for a Hep C regimen that would include Interferon - hopefully for 12, not 48 weeks but now there are the new drugs that will be out in 9 months or so and new, less intense treatments just on the horizon. My doc says we should wait a few months and do blood work again. Meantime, I am plagued by constant fatigue. Am I just being impatient to have a more concrete plan and timeline? Because of the cirrhosis, I could go from not so sick to Very sick if something were to go wrong at any turn. I know there are people out there who are much sicker than me. I have a consult with another hepatologist next week but no one seems to want to give me what I really want : A LIST -  here are 5 courses of action we could take and here are the pros and cons of each one

[sunru]

Getting a referral from kaiser means they pay for the appointment for you to see a hepatologist  and the hep dr explains to you how they see your situation and they advise your GI doc on what steps to take next.  It's a good way to be in the loop, to be better informed. It's frustrating to deal with the kaiser dr's as they are told to be obscure. My last appt I had at ucsf recently I learned that kaiser is developing a closer partnership with ucsf than they had in the past which is very good news.  I am waiting to find out about which treatment to go on since I had complications with triple tx last May.My GI dr is seeking advice from ucsf dr regarding this. The wait has been long over the holidays as ucsf is most likely very busy treating the very sick with new drugs.

The insurance decisions are complicated, get someone who can advise you about these decisions before you jump in to another plan. I have found in the past that switching to  part time at work can cause more stress to not have as many allowed days off as when I worked full time. With part time... if you take more time off then allowed which is usually less hrs  with part time, it can cause pressures from management for you to quit work .  Your situation might be different. My husband looked at the health exchange to try to get  me to switch to a PPO plan and after he looked at what they offered

[hepcandme]

But if you are referred from Kaiser, then they continue to pay the bills, right? Even if they are contracting with UCSF?
I sometimes wonder if I would be better off working 1/2 time - then I wouldn't be eligible for health insurance coverage at my work - and getting insurance through the exchange?
Hector posted a list of all the insurance accepted at UCSF not too long ago. After talking to a friend last night about everything he and his his wife went through at the end of her life (she died from liver cancer brought on by Hep C), I realize that there is an entire world of paperwork to wade through re: the best insurance coverage,and that, mathematically, you have chosen the right plan, deductibles, limits on out of pocket expenses, etc.
At least they can't reject you because of pre-existing conditions now. Thank you ObamaCare!
It made me sad to think that despite this Other aspect of my illness that I have not even delved into yet, I will get the advice and the insurance I need but that someone who is uneducated, intimidated or unable to understand their options, well, they probably just die.

[sunru]

I have cirrhosis too and your GI doc sounds just like mine in the way he explains things.  I have kaiser in the bay area but not SF kaiser.  I recently asked my GI dr if I could get a second opinion referral to see a hepatologist regarding the hcc tests that kaiser has been monitoring over the years. I was surprised he said yes, no problem. I paid out of pocket once to see a UCSF dr and believe me ... you don't want to go there, it's too expensive. Your GI dr. should be able to do this as kaiser has an outside referral dept. and they are working closely with UCSF now regarding their cirrhosis patients to get advice. Go for it girl, and don't worry! Good advice from team Medhelp as always.

[hepcat1954]

More about Break Through Designation

http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM358301.pdf

HC
...

[hepcat1954]

Great!  Just wanted to make sure my message didn't get lost in the noise!

Best to you,
HC

[nan535]

Hopefully being designated Break Through Therapy  will fast track approval
even faster than expected.  The trial results are incredible for this combo pill.

http://www.fda.gov/regulatoryinformation/legislation/federalfooddrugandcosmeticactfdcact/significantamendmentstothefdcact/fdasia/ucm341027.htm

Nan