Ashton Kutcher....where are you? Am I being punk????

[CIRQDUSOLIEL]

      My Dr at the University of Miami, Dr. Lennox Jeffers, of the "world reknown team" under Dr Eugene Schiff's group, STILL wants me to wait and not retreat as a coinfected person with HIV/HCV GT 1a for the "better" drugs to come out which he says are right around the corner.  Even so, if they are, I would and am onboard in retreating over and over and over until they do come out.  My grade and stage is 0/1 based the a previous Lap-BX done this past Dec 16th.  Keep reading for those not current with my situation.

     My response to him was, "Sure, where do I sign?" removing the cap from my pen expecting him to materialize some contract out of thin air.  "I'll wait for the "newer" drugs to get here; however, before I sign on the dotted line, in the mean time, what do you want me to do to combat the ever rising AST, ALT, and BILIRUBIN enzymes that continue to rise every time that I have blood work done?", I begin to question him in my calm demeanor at this point.....when suddenly the thought ran through my mind, "Wait a minute.....OMG.....I'm being punk'd!"

"Ashton," I hopped off the exam table to begin looking under and around it. " You get out here right now......boy, you guys really got me".  I grabbed his stethascope and knocked on it with my index finger moving it back and forth, into me and then away from me  looking and hoping to see the hidden camera.  My mind recalled how I looked as a child when I looked into a Christmas ball ornament.   No door burst opened and no camera crew showed. I was disappointed...........

As I straigthened his name tag, coat, and handed him his stethascope back I repeated my concern about the rising numbers.  Placing my fingers into midair with that "quotation mark" phrasing I said, " You know the one's that even your medical books suggest that damage is being done to your liver."

" I know and understand, Dr Jeffers, that the VL really isn't indicative of any damage been done to the liver. I agree with you on that",  , my voice beginning to raise ever so slightly along with both hands to emphasize my point," but you're really not telling me what to do about rising enzymes. You're telling me to just wait."

" As a person who has not been to a medical school, Dr. Jeffers, let alone didn't do well in high school biology, chemistry, or any other related classes.  TELL.....ME.....SOMETHING....N-E-W", as I placed my hands on either side of his face reenacting the scene from NELL starring Jodie Foster encouraging him to speak something new to me that I didn't already know.  By this time my eyebrows began to meet in the middle of my forehead with worry and disbelief as his eyes stared back at me without expression as if he reeeeaaaalllly wasn't putting two and two together here as I totally expected him to utter," A a chi ka pay a to da winnnn". The moment where Nell finally understood.....background music cresendos to it's height, the camera pans back to that heartbreaking moment where she UNDERSTOOD...tears rolling down my face as  I began moving his head gently up and down in positive affirmation that he understood this situation encouraging him to " say it again, Nell,  yes,.... you understand, don't you?".  But alas, as I relinquished his distorted face, I heard him utter, " I'd wait".  I realize, " He's serious!".    

I'm thinking this "Dr" has taken leave of his senses of the "fact" that for people who are coinfected battling both diseases, HCV progresses faster to a failing liver?  Again, Dr, Jeffers, reinstates his "expert" opinion about waiting.  After regrouping and straightening his name tag out from my moment of insanity, I rephrased the question and low and behold as if a light from above shone into that room.....He anwered, " Well, we can put you on URSO."  I'm thinking, " This is really no time to try and figure out what you're acronym stands for.  Could you put it layman's terms for me, please, or do I need to buy another vowel?"

"It lowers the liver enzymes" simply he said.
"Like the ALT, AST, and the Bilirubin?" I asked.  
"Yes, because you have minimal damage you can afford to wait for the "newer" drugs. This medicine will for a while lower your enzymes to acceptable levels."  
" You know you could've save yourself a lot of time and drama if you'd just said that to begin with ya know" as they dragged me out backwards out the door and down the hallway under each arm.  " No hard feelings, eh?"....again not a lot of words from a man that just stood there and was becoming smaller with distance.  " See ya next week?"

By the way, long story short......has anyone been on this or even heard of this URSO?  There's this whole restraining order thing.....so not sure if that includes a simple phone call to him....:)

In Him,
Rick

[122 Tactical Fighter Group]

I was put on Ursodiol for elevated liver enzymes in 2003 or so....no problems with it and the enzymes did deflate from previous levels. I unfortunately lost health insurance at that time and have been drifting aimlessly since then - hope that you do it and it works.....I was in clinical trial through Mayo Clinic for interferon / riba combo therapy in "96 - 5 million unit injection every other day - - its no picnic now, but you all dont really know how well you got it! My thoughts are with all seeking healing....................

[meki]

Oh Rick - you are an excellent writer!

I could just see you looking at him carefully with your hands beside his head - shaking it up and down... LMAO --- oh and them dragging you out... LOLOLOLOLOL!

You don't know how many times I felt like saying I KNOW MORE THAN YOU... Maybe not the right stuff - but I know enough to know something should be done... Just what that something is --- sigh... I dunno... LOL!

Well Rick - I don't know anything about HIV. Other than the basics. And I don't know how you are handling co-infection - or what level of damage or symptoms you're experiencing.

But I do know you're a wonderful person and you deserve the best care and treatment.

Is Dr. Jeffers up to speed with co-infection?

And how do you feel about waiting for TX?

About the URSO - I don't know if lowering or raising the ALT/AST enzymes or lowering the bili is going to help or not.

Heck --- my daughter was born ORANGE --- I do mean ORANGE... it was interesting... But they put her under a light.

And that light made her turn normal looking.

So - I don't know if that has ANYTHING to do with lowering anything --- but it was a thought.

And I just wanted to say that you are much loved here.

Meki

[mikesimon]

"Raised liver enzymes don't necessarily correlate with more liver damage."
Well, that may be true but the presence of ongoing elevated ALT and AST suggests that cell death is occurring and that liver damage will likely result in time. How much time? That is the question. Mike

[jmjm530]

Raised liver enzymes don't necessarily correlate with more liver damage. In fact, as Dr. Dieterich they ironically correlate with better chances of SVR which I've read previously. http://www.medhelp.org/posts/show/543677

I admire your positivism and gumption, but here I'd side with Dr. Jeffers and say wait for something more promising given your excellent biopsy results. I also see you posted a question to Dr. Dieterich, and hopefully he will chime in soon. If not, why don't you "bump" it to the top as it seems he's overlooked some of the questions in the middle.

-- Jim

[charm27]

I use Dr. Jeffers also. I am stage 2 grade 2. He didnt want to tx me at stage 2 either. He told me to come back in 3 years.  I insisted. He said it is very slow moving at being I had it 25 years he wouldnt advise tx at this time.

Every physician has another song to sing. Everyone has their own opinion.
Its entirely up to the person.

Crazy.........I dont know.

[rita863]

dont mean to laugh at your situation, but your story was great!!!!  at least you are amusing in telling this horror of doctors visit.  

and i agres  with Deb isnt it the patients right to treatement?

good luck!

peace
rita

[mikesimon]

I have seen ursodeoxycholic acid used to treat autoimmune hepatitis and Primary Sclerosing Cholangitis. I haven't seen it prescribed in the setting of HCV and HIV. I believe that HR may have reference this drug at one time but I am not certain about that. Perhaps you might post a question directed to him about urso.
Mike

[nygirl7]

Wow - I didn't know if I should laugh or cry when I read this so I think I did a little of both!

I have NO idea what urso is and i've never heard of it before.  I don't understand why it isn't your right to treat if you want to - that is so freaking annoying!

[FlGuy]

Without checking, I'd guess urso is prescribed for anger management- may be a tranquilizer or coma inducing.