How high can a total bilirubin get in a living person? Eyes soooo yellow

I just keep watching brother's bili go up up up, and it's scaring me. He is so yellow, especially his eyes. Today I am back home in Mass while my other brother went to join him at the Gabriel House at the Mayo, taking my place because of my daughter's commencement from graduate school.



His bili today is 26.8

ALT 467

AST 567


This morning, the doctor apparently told him they want to start the triple treatment and try to get him in a study. Waiting for insurance approval on the telaprevir...the other two are ribavirin and Pegasys. He is between stages 2 & 3 on the liver damage from his Hep C after only 5 months post-transplant.


Anyone have any knowledge of all this? I guess the telaprevir alone is 30k, yikes!


After ins. approval he will have to stay at Gabriel House for 12 days observation on the new treatment. Then I guess he could leave unless something else pops up, God forbid.


Will check back later, I'm at the library b/c it is annoying to type all this on my Iphone (don't have internet in my summer place)

Thanks.

Post Edited By Moderator (hep93) : 5/28/2013 4:03:56 PM (GMT-6)

MaE,

I did a bunch of reading after your recent posts and would have agreed with Connie about the bile duct obstruction. 

One site I found was way too technical but it went into the zillion things that can go wrong, in unique unusual cases post transplant.

If one is going to have one of those one in a million combination of labs and symptoms, best you are at one of the best centers in the world, be in Mayo or MGH.  They will dig and dig and dig until they figure it out.  Have faith, take one of Sandia's BIG BREATHs and let them work on this.

Mike was frantic when he had a liver biopsy last year and they told him he was having acute rejection episode. I had him dead and buried before I realized that most folks have some rejection episode or episodes early on and that was his.  The docs had a big conference in our cube at the clinic...with a doc from every continent I think, and they came up with a change of meds and a schedule of labs and procedures. In the end all was well.  the head of the post transplant lab came in to talk to us at the endof that appointment and brought up two other patients on their system and we some some impressive billi, ast, alt, viral load numbers...and he said that lady was going to be fine...that Mike's episode, while worrisome, was not desperate.  And a year later we can hardly remember how frantic we were.

I am hoping for the best outcome.  For him and the family.

David and Connie sent me a book a while back called Four Livers and No Funeral by Glorida Edel.  Email me your best address and I'll send it to you tomorrow.  My email is in my profile.

(((((((Many Hugs)))))))))

Carol

I agree with SyXx.

And with the literature so clear about blockages and high billi!

How is his Creatinine?

Mae,
You and Richard are in my thots and concerns. I popped in tonight to check on everyone of my boardies. I have no advice since I am just entering themister in making appts for evaluation at Mayo AZ. I want you to know I speak to my husband about each of you, during his lucid periods (which are better thanks to Lactalose and Xifaxan....and being keenly aware all day long). We hate to see what is going on so soon post transplant, but it does seem many have post transplant episodes and go on to tell the tales.

Frankly, these numbers and all of this scares me...it must terrify you guys. Themister did do treatment for HepC and obtained SVR, but being a geno 3a, it was not the triple, so I am really not much help for you : (

Be well, try to rest and know you have us pulling for you. Big hugs, themiz

Miz

Thank you. Is the mister still in svr? Funny ow the genotypes are so different. That must have been such a relief for you both.

Yes Carol went thru huge hurdles with Mike and pretty much had him buried but he has done a lot better since. So I'm going with that for brother :)


Are you very close to Mayo, AZ?

Glad you said that Carol, he is seeing dr in an hour. I want him to ask if that might be a good test for him.

Gracias Señora !

Yes, Mae...themister is SVR as of his last test (Jan 17, 2013). A geno 3 is supposed to be much easier. It was themister's 2nd time treating. They treat 3's for 24 weeks. Some want to go 48 in those with cirrhosis. He treated in '05-06. 4 weeks post end of treatment...Fail. He was horribly depressed, decided to live out natural life and not do anything more.

Then he heard of the triple combo in trial from a newspaper article.

We watched the trials, spent hours researching, sold his truck filed for disability, sold a property, and got all directives in order. He got excited to live.... and treat again. When the triple was approved by the FDA, he went in that week so hyped to give it a go. Then, another big defeat. The triple combo was not approved for geno 3. The gastro told him he would still give it a 2nd shot, and he agreed. He started the SOC (Ribo/Interferon)

July 2011, he started. Themister was clear on his viral load was undetectable on a PCR/RNA Super Quant test, August 2011. Stayed clear throughout treatment. He finished at 24 weeks, in Jan 2012. He was very ill with the 2nd time vs the 1st treatment. His SVR testing date was July 2012. He did obtain SVR.

When he had TIPS in Jan 2013, the doc got a scalpel stick and themister and doc were tested again. Needless to say, we felt awful for the doc. Terrified, as themister was in ICU and his MELD score double since obtaining SVR. Tough disease, this liver stuff. The hospital ran HIV, HVC and various other tests for the scalpel stick accident.Themister remained SVR Jan 2013. No tests since.

That is the long version, probably more info than you want. Treatment was worth it, even with many complications, and hopefully, he will be transplant worthy, and this Hep C will not return. I am so saddened your brother is so ill. Hang in there.

Oh, yes, we do live near Mayo AZ. We relocated this month to retire... regardless of anything else. We planned this for years. It is so much easier. I was driving 3 hours each direction for every test, EGD, emergency, surgery, doc appt. We should have moved 3 years ago. Hugs, Mae. And one for Richard. themiz

Post Edited (themiz) : 5/30/2013 4:59:43 PM (GMT-6)

Syxx, I texted both brothers to ask about ERCP and both forgot, grrr...they said they were so tied up with the beginning of treatment plan.

Miz. When he reached svr, I would have thought he wouldn't need TP. Maybe cirrhosis is the problem? I guess i assumed that svr would mean no more damage. So happy that treatment worked for him. And so glad he had the gumption to continue the fight:)

So brother went to doc today, insurance hadn't approved yet for telaprevir, BUT they started him anyway! His viral load is 69 million, yikes. He is type 1a. Don't know who is paying for the drug until insurance accepts. Maybe Mayo, will ask him when he is not so overwhelmed.

Clinical notes said severe recurrence suggestive of cholestatic hep C.
Stage II-III

Post Edited By Moderator (hep93) : 5/29/2013 8:39:14 PM (GMT-6)

Connie,

Now I'm worried because he had labs for the past two days and they're not showing up online. Makes me wonder if they were too dire or something. They do that at Brigham and women's hosp. With reports like biopsy results. They wait until dr talks to you before they post, I guess so as not to worry you.

He started triple therapy yesterday feels horrid already.

Has anyone seen viral load of 69,000,000 ?

Dang I hate typing with iPhones and iPads. Hard for a former typist to get used to.

Can't wait to get back to PC.

Carol,

Yes I just looked it up, he is now on ursodiol 500 mg. what is that for?

When Mike reached 59 million, is that when he started treatment?
Don't bother responding on your IPhone I can wait til you get to a PC and thanks for the info :)

I wish I was able to stay down at mayo with brother at the Gabriel House....now I have so much more to learn about his new meds, they changed so many after treatment started yesterday.

Carol yes I do know what you mean, he has to rely on son (a good time Charlie) to run the business so he can keep paying 3k a month for his health insurance on top of the added expense of staying in Jax.

We all know how that turned out the first time around, ugh.

Mayo just called me to tell brother to increase cyclosporine again b/c his level going back down to 52.

I just checked his platelets and it says 206 x 1000. Does that mean that Mike's would read 70 x 1000?

Just trying to understand the labs. Is there nothing that can be done to increase Mike's blood counts and platelets? Well I guess they would've if they could've.

Yep, in the words of the late Roseanne Roseannadanna, "it's always somethin'".

Well they never did with my brother that I know of but now they are watching his cyclosporine and I guess his viral load due to the triple therapy regimen he just started.

Just called me in fact to increase his cyclosporine. They are worried about rejection.

Hugs
Mae