Seeking Hep C treatment, do I need a Hepatologist?

Mitzi...

I am really glad to hear that you have been approved for Harvoni. It is supposed to be the best choice out there at this time.

Though you are frustrated that they have waited until your liver is more damaged to treat...that is pretty much how the Insurance companies are doing it...you have to be ill to get the treatment...I think because it would cost too much money to treat everyone, so they only do the worst ones.

Folks are having very few side effects from the meds. Harvoni ... we are hearing some tummy stuff and headaches and are recommending keeping hydrated...really hydrated. If your platelets tank, they can supplement in a few ways. Mikes were something like 20 before transplant.

Mike had Sovaldi and Olysio with fibroscan level 3. He was also told that level 4 was cirrhosis and he was pretty sad to learn that his nice new liver had gotten seriously damaged while waiting for new meds to be FDA approved and then approved by his insurance. I think he would not be eligible for a second transplant at this point as he will age out of the program down the line...so he has to keep this one in good shape.

However, I have begun to read some things online about chirrosis and successful Hep C treatments.. The old rule of thumb was that a cirrhotic liver count not / would not regenerate tissue. Well, there are some who are challenging that "rule." Wouldn't that be something, if you could regain some health after successful treatment.

Good luck to you...I feel certain this is doable. We have one member whose hubby did Sovaldi and Olysio and relapsed. They have him on Harvoni now...I hope she posts in (DDMom).

Hi Mitzi , you should see a hepatologist. Should alsowhen a dr sees a platelet count of 80,000, a full exam, with biopsy and ultrasound, is in order. There should be a sense of urgency.

Cirrhosis has 3 stages. It called child Pugh score, 1,2 or 3. 3 is ESLD. If your liver is still functioning fully you are a 1 or 2. Also, if your liver is doing the job, most call it compensated. When your liver is failing it is decompensated.

Are you being monitored for HCC?
Best Barry

Mitzi.

If you are on the Space Coast, your closest Transplant Centers are:

Mayo Jacksonville www.mayoclinic.org/departments-centers/transplant-center/liver-transplant

Florida Hospital Orlando /www.floridahospital.com/orlando/liver-transplant

Jackson Transplant Miami www.jacksonhealth.org/transplant-liver-adult.asp

This is where the big shots are, the best hepatologists want to be where the "action" is...research, surgery, front line with newest treatments, etc..

I am not saying that you are interested, eligible, or need a transplant, only saying where the best docs are.

Before Mike got to the TP stage, he had a consultation with a TP Hep to go over his situation, to find when it would be "time" to come to the hospital and stop going to community GI services. They reviewed his labs, recommended some additonal labs, reviewed his biopsy slides, etc and gave us a pretty good list of IFs...so when the platelets tanked, and HE got bad, and urine got brown, etc. et . It was TIME to take on the commute to Jacksonville, Orlando, or Miami.

We are on the Treasure Coast, just south of you, and chose Miami...125 miles for us. They were fine with his Medicaid, though he did have to switch HMOs to one they took. For the year of the transplant, he got extra services.

Now post TP, he goes down a few times a year unless there is something else going on....like now. He has a hernia that needs to be repaired and they like to do deal with their own patients.

Before we moved to Florida, we lived in CT. There our choices were in Boston or New York. We saw a Hep in NY at Mt Sinai once a year to review the status while he was being treated at UConn in their GI department.

I need to say that our local GI doc here on teh Treasure Coast would never have said it was "time," even though he was very sick. He would have died had a hematologist not made the final referral. See...Mike was still drinking alcohol and the GI doc figured he'd not qualify for TP so why bother...he was a goner...self induced (I have very negative feelings about that doc). The Hematologist knew he was dying and send him forward with the admonition that he'd need 6 months of sobriety and she hoped Mike would be successful with that because without it, he would die. Thank goodness she helped him. The docs in Miami were fantastic to work with.

We have several folks here on the Harvoni.

Go to the blue line above and find SEARCH. Choose Harvoni as your key word and the other threads on it should pop up. Post on t hose threads and see if you can get something going...I think there are 3 others.

Good luck...I am certain the Harvoni will work.

Hugs,

Mama Lama