#^$&#@!%&*^$...and that wasn't pretty, what I just said.

[emkins1]

Well, there you are, Robin.  Maybe if I'd read the boards more, I'd find out what's happening!  Glad the ordeal's over.  I'm prayin' for the husband now.  He may present surgeon with a real job after all the heavy work he's been doing lately.  May he stitch up as nicely as you did.  Dunno how you can get those white cells up without Neupogen.  Is your doctor considering using that drug right off the bat maybe?  It'll do the job, you know.  Makes you hurt all over, but you know something about that.

love,em

[debugz]

Heh Robin my friend.  My email is back   ...about the white cells...can they jump start you with a transfusion?  I am not educated in these things so I don't know if that is possible...all I know is I hate neupogen...made me hurt.  I am sick of hurting.  How are you overall?  Is the tongue thing gone?  Is everything working ok and you are getting all the meds you need now?  Just trying to play catch up here...I am at work so I zip on the site and check things out and write a little and then ...yep...zip out.  I am quite zippy

Hugs-in-bunches....Diana

[robin]

I didn't have any bad sides from neupogen but for some reason, the TP doc doesn't want to do that. The hepatologist is going to do what the TP doc recommends so I'm thinking I might need to transfer elsewhere, once I hit the one year mark. Thanks for offering your suggestions...keep your spirits high...robin

[19Dragon52]

{{{Robin}}}

Just wanted to stop in and say, "Hello."  Also to find out how things were going for you.  You sure seem to be tilting the positive side day by day aside from the WBC count.  You are definitely an inspiration!

Love You Lots.....

[robin]

Awwww...now I'm gonna blush, Joyce,  . I'm probably just going to a different heppertologist after my year is up since I want someone with big....well you get the idea. Thanks for your kind words and keep your spirits high...robin

[Mongo]

Thanks for responding...I feel like I'm in a slow dive right now so far as treatment. Keep your spirits high...robin

 

Robin,

If, by some strange circumstance, you don't pull out of this nose dive, just aim for me...you'll bounce off my hard head high enough to level out nicely and continue your flight...



Mongo

[robin]

Aww, dear sweet Mongo. If I have to go in a tailspin downward, I will search diligently for your head. Of course, I can only assume considering the thickness of my own personal skull, we might be like slamming a couple of pieces of concrete. Life is sweet, but only as sweet as those we include in it. Keep your spirits high...robin

[RedRodeo]

Robin There is one  sure way to lower you LFTs. It wouldm't effect anything else. Simple Ribafarvin. when taken alone will lower lfts to normal range. You might get anemia. Do you have any extra.
C

[hanklive39]

Please do not take this as being offensive or, as a comment directed at anyone's response specifically but, as someone who is about to celebrate his eleventh post liver transplant anniversary, I believe I'm qualified to understand intimately some - if not all of Robin's frustrations with her hepatologist as well as being able to understand the caution that must be taken in treating someone who still hasn't reached their first year of receiving their "Gift of Life" 

First of, every, and I mean EVERY post transplant patient MUST be treated independently, and differently because of the unique interaction that is occurring inside their bodies now that the grafted organ (In Robin's case - her new liver)is beginning to become VERY intricately intertwined and for the most part becoming totally accepted by the host person's own unique, and I do not choose this word haphazardly - immune system which in itself is a model of complexity of the highest order which is putting it VERY, VERY mildly.

The very nature of performing, and assuring/maintaining that a transplanted organ becomes accepted by the host person's body is a miracle in itself as much as was the "parting of the red sea" if one studies the amount of potential side effects, complications, setbacks, and modifications in lifestyle every INDIVIDUAL (Again, I emphasize the word INDIVIDUAL) will go through which is guaranteed to be totally unique although with many similar circumstances is truly mind boggling, and could only be the work of divine intervention in the whole scheme of things!!!

Remember folks, even today after years of experience in transplantation involved with a variety of different organs, Dr, Thomas E. starzyl - The father of Liver Transplantation has been quoted in saying: "Still, the potential for someone to survive a transplant such as a liver transplant is at best, a 50-50 proposition yet remarkably, those odds dramatically start to improve shortly thereafter so long as the cooperation between all members, meaning the transplant surgeon, the patient, their hepatologist, and the patient's Primary Care Physician (PCP) is consistent in nature, and their lines of communication so to speak, are always open and ready in case of any unforeseen situation that can at any given moment - rear it's ugly head."

The very REAL fact that Robin as well as many other folks who have just recently received or have been living a "NEW" life with their transplanted organ or organs, have been put on a daily regimen of many different chemical compositions especially of the type that once were considered impossible to formulate, makes it VERY, VERY, VERY complicated for any one of the doctors responsible with her care in their efforts to making sure that there are no potential for harmful drug interactions when they decide what would be the most effective form of drug treatment to use as opposed to overlooking the very REAL possibility that the drug they prescribe to Robin or any other post transplant patient can potentially do more harm to them than help them relieve some of the many, many complication that WILL happen more than once as it has been my own, and many other folks experiences throughout the "New" life of any post-transplant patient regardless of what organ they received...

Remember another factoid here folks... The liver is only second to the brain when comparing the level of complexity, and the amount of key functions each organ is responsible for in keeping us alive, and functioning to some degree or another with respect to each patient's quality of life. So, treating a condition such as low white blood cell count for a quote: Normal" or a pre-transplant patient is worlds apart when comparing what needs to be prepared for when treating the same condition for someone who has already received an organ transplant because, what is considered a normal or accepted form of treatment for someone who hasn't received "The Gift of Life" can very, very, very easily become a trigger that will potentially cause organ rejection!!!! This is the primary concern that the team of doctors must always consider when making the most prudent decision in prescribing the most effective drug or any other form of treatment for whatever condition the patient is facing, and seeking treatment for.

So just as a reminder folks, we need to recognize that these teams of doctors, and their supporting personnel are "under the gun" so to speak, because of the level of complexity they're working at in order to assure that their decisions in treating each, and every individual who are totally unique, and different from each other, not only effectivey but also in a manner, safe for them especially when it comes to avoiding the potential for possible host rejection of the allograft - meaning the transplanted organ.

I think i'll take the time in the near future to post up some references, and web links that will verify this in many different scenarios but at the present time I've got too much grading of homework assignments, and quizzes from my students to find any spare time to do what I just mentioned at the present time so, please be patient with me because, I too am "under the gun" so to speak in making sure that my students grade picture so far will be at the very least understandable to most of them - come this Monday of the upcoming week ahead!!! Please pray for me because as some of us well know, an educator faces one of their biggest challenges in patience when it comes to explaining the "Rubrick's" they use in formulating a student's Grade Point Average, otherwise known as their GPA - especially when the semester hasn't even finished yet!!! 

Respectfully,
Henry

[robin]

Gee, thanks Hank. You gave me a lot of mind stuff in your post and I'll try to be more patient with my doctor. I know he has been trying really hard to keep my white count up by stopping my cellcept. Now, why he didn't give me neupogen, I don't know but so far I'm doing fine. My meds are so few now I'm amazed. I only take Gengraf, prednisone, blood pressure medicine and protonix which is totally unrelated to my transplant. I do need to call and ask what my white count is doing without the cell cept.

I have another question when you get time. Why do you think they did another Hep C panel, along with genotype and viral load? The coordinator indicated that it was due to the remote possibilty that I could have been exposed to other pathogens. So, if that's the case, why not test for HIV? I've had no risk factors since I got out of the hospital.

How often do you have a biopsy done? At what time did they start you on maintenance? OK...I had more than one question. I always think I only have one and then about a dozen come to mind. Can I claim hepper brain?

Don't work too hard and always Keep your spirits high...robin

Try not to work too hard.