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215816 tn?1212494007


Hey Guys!
     Well, I just gotten back from my Dr's office, and after discussing my results, here's what will be going in my life:
1.  Changing to a new infectious disease Dr.  The one that I go to now I believe/feel has too much on her plate.  Not really connecting with her.  Am really encourage about the new one that I have chosen.  Staying healthy, dosing every pill, every day...and staying the course.....( although admittingly, I internally did have somewhat of a meltdown today, but quickly got refocused this morning...)...keeping the HIV under control...

2.  Since I am so close to finishing out the 48 weeks of treatment, my Dr. said that I could go ahead and do so as long as I wasn't experiencing any major side effects.  That doing so would be fine.....this medicine helps the liver in so many regards....so nonresponders/relapsers YOU ARE DOING YOUR LIVER SOME GOOD by treating.  My BX before TX was 0/1...

3.  After completing the 48 weeks, I would probably be placed on a low dose maintenance therapy progam of the interferon to help keep away any or slow down any cirrohis...

4.  I have an appt with Dr. Eugene Schiff at the University of Miami in Oct. to just make sure that I haven't overlooked any options at all.   They will be beginning clinicals trials on coinfected people who have NOT treated in Nov. With what I don't know, but they are doing trials will find out more by asking them at my Oct's visit. They also highly reassurred me that the VX-950 would be to market by/in 2009....so all you nonresponders/relapsers hold on, OK?  It's right there....

5.  Althought felt disappointed over this, I did go into this fully researched to the best of my ability...hoping for the best, but did prepare for the worse.  Coinfected people with HIV do have a tougher time getting rid of it, but it is not impossible.  I am even prepared to look at possibly treating it again in say February as just another option....Until then keeping the faith.....keep me in your prayers

In Him,
9 Responses
96938 tn?1189803458
Sounds like you are covering the right angles on this and seeing Schiff is the right way to go.  I don't recall when the 48 is over but Schiff will probably have some opinions about maintenance as well.  A couple of suggestions as you get ready, I saw a doc in UM too.  They'll probably give you instructions for sending records to UM in advance, these would include labs, cbc's, pcrs etc.  Try to start getting your hands on it and put it in some logical sequence.  Keep a spare copy just in case it goes into a black hole somewhere.  Bring that extra copy set with you to UM - just in case but guard it with your life.  Schiff will likely provide consultation notes to the doc who is treating you.  In fact, he may record those comments while you are in the room. So, you'll need to provide the contact information for the doc who will get the consultation notes.  Go in there will a list of questions and take notes.  You should take your biospy report with with and , just in case, call around to make sure that you can locate the biopsy slides - just in case you are asked to produce them.  Good luck, Rick.
215816 tn?1212494007
I have gotten all reports including the bx done in Dec. '06 before beginning tx in Jan. '07 showing bx report of 0/1.  All lab reports with every PCR test done showing liver panel functions, log drops, counts, and bx report done ...each in their own folders reflecting their months...( including my HIV in it's own seperate folder.)  I think I might take a mini recorder with me if it's allowed just to make sure that I don't forget anything, and it might be sorta cool to play that back to my new Dr.  My list of questions for Schiff's team will be short, direct, and percise.  Will the hospital let me have the biopsy slides though?  Interesting point...never thought about that.....My 48 weeks journey ends the second week in Dec.  

Elaine- got your email....wow!  Now who's lifting who up...thanks for letting me lean on you and Nick!!!!

Resting In HIm,
96938 tn?1189803458
You may not need the slides.  But, it's a good idea to know where they are in case you.  The reason I suggested knowing is in teh event that Schiff does a fibroscan and needs a basis of compariosn with prior bx results.  If so, I'm not sure if they rely on the report for that compare,  or if slide are needed.  I'm a belt and suspenders kinda guy and try to cover all possibilities.
215816 tn?1212494007
     I lean toward the side of both suspenders and belt too.   I'm actually in favor of doing another BX, rather than a fibroscan.  I keep mentioning it to my current Dr, and she said that it's not really standard procedure.  Standard or not...just write the order, and call it a day...OK?  I want to know the benefits of the 48 weeks of this tx...so one of my "request" to the Schiff group will be to have another BX done!!!!....like yourself and so many here, I, too, am sooo way proactive in making sure all my " T's" are crossed and my " I's " are dotted.......BX's are no fun, but I'm so use to being pricked with needles....what's another one, eh?  

     By the way, this is for anyone out there....any thoughts on nutrition.  Like going totally organic....vegeterian???...or superfoods best to enhance liver function....I eat OK, however, during this tx not so much....haven't gone crazy, but did slack off some from good eating habits.

In Him,
217229 tn?1192766004

And a big wet smacker on the cheek! *ya don't wanna be wearing my bright pink lipstick* so I'll even wipe it off.. LOL!

186606 tn?1263513790
I want to see what you tell Mr. Rick about nutrition as well.  hahaha, maybe i should pay attention!

No news from the study doc yet, Rick
96938 tn?1189803458
The benefit of recent, or current, IFN therapy is a good question for the doc. That is, after 6,10 or 12 months of tx could there be observable difference in the condition of the liver.  Or, would any change to the liver 'lag' beyond the completion of the therapy. Good luck Rick, you'll be in good hands with those guys.  Keep aware of trial opportunities, they get involved in a lot of them there.
146021 tn?1237208487
I like all the input, but diet recommendations are definitely lacking, as Deb and I are waiting for some advice also. I have modified my diet in micro measurements. I beleive in probiotics, (you can get these in pill form at the health food store, but you probably already are doing this) natural antioxidants, (pomegranites and blueberries are my favorite) and organic dairy poducts (milk and eggs) I also try to get a healthy dose of omega 3 through salmon or the eggs. I need to eat less red meat, but it's hard to live with a meat and potato kind of husband, and eat chicken and fish.
I'm so glad you pulled through your meltdown, I think we all go through this and it's good to just let go and grieve a little....just as long as we can get back to the right perspective. It's hard for me too sometimes, but it's amazing how many times you've picked me up and set me straight. Also, this forum is a blessing for education, advice and support.
I think the liver biopsy is a great idea. Knowledge helps us to make the best informed choices. What we consent to in tx depends on the info we have at hand...informed consent....our best tool in being proactive in our healthcare.
Hope the sun is shining on your face tomorrow.....
Hugs and Prayers,
ps..tomorrow is Nick's appt, I'm sure you'll remember him and Elaine in your prayers...
173975 tn?1216261375
Glad to see the costume party's off and you're exploring your options, instead. (although I WAS looking forward to the Margaritas, ice cream and chocolates).

You got a LOTTA fight left in you!

My Dr. also mentioned to me the possibility of going on maintenance therapy if TX isn't successful.

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