Hey, I go to Cedars too! let us know how things go...don't you hate it when movie stars are there and you can't get in the place? lol....best of luck to you, I'm very interested in what you have to say here!
I'm waiting to hear on getting into a protease trial as well...mine's the R1626 Phase II trial. Which one are you aiming for? Good luck with all that!! Will look forward to the updates as you go.
Trish, I'll let ya know on the 28th, (I hope). Forsee., The Cedars I'm going to is in West L.A., Ca. (is that the one you go to) ? Since you mentioned movie stars, I'm assuming 'yes'! Trish, I'll ask my 'Study Guy', Martin, about your 'R1626 Phase II. I'll be sure to keep everyone 'posted' re; my tx, As soon as I know anything. As far as getting in the Hosp.(while V.I.P.'s are in there, I don't care. Unless, of course, I have to use the restroom, or I'm or having an asthma attack. I've never understood wild fans tearing shirts off, bugging stars in restaurants, etc. etc.. I'll bet their poop stinks too.
This is how my mind works, (when it's working, that is): I am thinking that the same person who invented the word 'cirrhosis', also invented the word 'hemorrhage'. Both words have and extra 'R', that changes nothing in the pronounciation. And then there's that 'H'. I'am also wondering why he threw that in there too. Probably the same reason as the guy who made up 'why and 'who'. Help, I think I have a word fetish. Smiling sheepishly, Ant B
I don't know what I was thinking...my study isn't a protease inhibitor..it's polymerase. Just had to fix that.
Wish you lots of good luck with your doctors visit. We are all plugging for you.
have you thought about irvine? I dunno if they have a study or not. Mikkie is going there, i think....
fingers and toes will be crossed for you!
Hugs Ant B, your the sweetest!
hi, please let me know how this goes...you know, Lomalinda is a really, really good hospital too over there, are you from that area? But yeah, Cedar's is running a whole lot of trials out of there...maybe the others aren't as much, I don't know for sure...yeah, hero worship on this scale is pretty silly...I just remember Brad Pitt on the premises and I couldn't get in there because of paparazzi...man, if I had a junky car I'd of slammed into one of their trucks! just kiddin! Happens every so often...not to mention who you see waiting in the liver ward lobby...glad I have some integrity and not one to make money on that stuff:))) But believe me people, I just wonder how many rock stars, movie stars, famous artists of all kinds have this? A LOT....
I'm wishing the best for you . Sounds like a busty week coming up for you. You will be in my thoughts all week.
I'll bring my pepper spray for my appointment there in March...lol
Looking forward to meeting your doc.
wassup i think is in laguna, I heard not long ago Loma linda closed their liver transplant dept. As did UCLA which I had always heard was the best, better even than cedars. I am not sure about all that, that is all just grapevine stuff.
Mikkie just don't get star struck, i heard sx for that was not fun!
for me, I just like the head of Cedar's liver dept...a lot more then I liked the head of UCLA's LD..but that was just my preference regarding what happened to me...others might think differently of course...hope youre well...haven't heard anything that UCLA closed it's dept, but then I don't know for sure either...
Well maybe not the whole dept, but I am sure the transplant dept is closed, along with Loma Lindas.
I am partial to UCLA, lol.. long standing rivalry!
I haven't been to either other that to UCLA for small things.
Ok my curiosity is perked, what happened?
I am doing ok, tired, but then that is nothing new lol!
one more post, than I'm offa here! lol....well (and I think he's gone out of there now anyway, cause I don't like to bad rap a place just because of my own experience, because others might have better or other experiences, etc)
I went to UCLA, and the head doc there told me, outright, that people who have hep c who are in lower stages of liver disease, don't get symptoms from the Hep C Virus itself...that really pssed me off...like I said, don't think he's there any more.. the facility itself has a very good rep like you said....
I, for a minute, just wished that he was in my body for a week, then come and tell me that noncense...
he continued with, "only people who have Hep C and cirrhosis, or ESLD are the only ones who have real symptoms".... like this was all in my head and I had nothing else better to do...while he's waiting to go play friggin tennis or something with his tanned, healthy "never had a disease in his life" body....how can you really know unless you've traveled in another person's shoes, right?
But then if you look at it from his point of view, symptoms aren't necessarily calibrated by tests, they come from word of mouth from patients...and that's not scientifically verifiable to a lot of them...
and then, I was in the waiting room there...and I saw, first hand, all these people in later stages of ESLD...and it was really frightening and sad...and I figure, he sees people like this ALL DAY...and then I come in...nicely dressed and moderately attractive, etc...guess I can put it together that why he thinks I'm full of it, compared to his other patients...cause I don't LOOK SICK....but that's why they call this the "Look Good - Feel Like Shite" disease....
Even though, if I was a clinical doc...and I had patients streaming in that didn't know each other of course....and they kept telling me, over and over, the same kinds of symptoms, in a particular set of circumstances...well..
.I might have a light bulb go off in my head and think...hey, maybe there is something to this? Maybe the virus itself is wreaking some havoc in or by the immune system, or something, because all these patients are telling me the same things???? and they don't know each other, and have nothing to gain by LYING TO ME...I just don't think all these docs think all this stuff through...
many of them think patients reports on symptoms that aren't able to be tested out are just so much blithering, it's too bad, cause it doesn't feel good to be ill, and then be invalidated by a healthy person, doc or no doc...sorry for the rant, this topic is particularly pissy for me, ha ha ha! Good thing my doc at Cedars does believe people can express symptoms from this with even 0 liver damage....be well....
The first doc I saw did the same thing to me. Acted like I was nuts to have symptoms at an early stage. He even went as far as to tell me about a study that was done in Europe somewhere where people who were not told about the symptoms did not get them.
I went home believing I was a total hypochondriac - but couldn't will these darn sx away.
The Doc I'm seeing now at UCI seems pretty good but did mention that symptoms were very rare. (u can tell he's not been on this site!)
I'm looking forward to seeing your doc. I saw he has written some good articles.
Never hurts to get that 2nd opinion. It's kinda funny how personality plays a role in the dr. selection process as well.
Hi Deb - on "the star struck"
I do kinda miss that in a weird sort of way...I worked on the WB lot in Burbank for the last 9 years...they filmed ER in my office once a month, I became friends with the Friends and Drew and meet lots of great stars, I even had my own golf cart to tour folks around the lot...OK now I'm starting to miss my job...NOT.....so guess I had my fill of Hollyweird. There were some very pretentious folks with some amazing egos - it's nice not to have to "perform" any more. I Love just being with my horses!
Cross my fingers for you that morning. Good luck !!
4c....I went to UCLA, and the head doc there told me, outright, that people who have hep c who are in lower stages of liver disease, don't get symptoms from the Hep C Virus itself...
He's an IDIOT!!
.....but that's why they call this the "Look Good - Feel Like Shite" disease....
Exactly! But do like like sheet ON tx :(
ummmmm....'LOOK like sheet".....
Ok I am peeoed now! There is nothing more annoying than some smart *ss, Doc tell you what your body is feeling!
I am having a really hard time adjusting to Civilian Docs. My husband is retired military, we spent most of his time in Europe. So we got to go t hospitals like like Landsthul. Some very good English hospitals, german and Italian.
My hubby and I both maintain that if my accident had happened in the states I would be dead. For trauma and stuff no Docs better. No malpractice, just the desire to save lives.
My GI there was also awesome. Then we retired and went to AZ, while waiting for work.
I was on tx with peg then, I will never forget waiting in the room and the waiting to see Doc, I heard him ask the nurse, are you ok with going in there? She has hepc ! She is contagious so be careful.
I felt so small and so dirty! he was a military Doc, all I wanted was a referal for GI to continue with tx. I was speachless. Came out of room crying, husband was NOT happy and went and had a word.
When I got home I stayed up and called germany to tell GI there. I am pretty sure he had a word also! (ok I am a big baby!)
It was actually a military doc in England who thought there were liver problems. it was before they were able to diagnose it. I had gone in feeling so tired and no get up and go. Getting bad sinus headaches and just generally crappy.
He was very confused because i had red spots on my palms. But after a time i sort of forget about it and adjusted to the feeling. He KNEW there was something,)
So some smart *ss thinks he can tell you how your body feels? Sorry but most people have that sense there is something not right. Fair enough our symptons not be the same as ESLD, or more advanced. But if you know your body, you know it!
Adjusting to this world has been hard, I admire you and mikkie for doing so much homework, I freaked out when I learned and just said ok, to most everything.
I learned not to do that, to not let anyone tell me something Doc or not. You get tough with this disease!
Thanks for sharing! I know you will both will do great and even on the bad days know you will get through it and your not alone.
I wanted to add that the whole time I was undiagnosed, I knew there was something wrong, I knew it was something to do with my liver. I knew!
that's horrible for that doc to say those things - with you in earshot no less! He's the small man...I agree with you on the docs in Europe...my younger sis had ESLD and liver shut down, so did her kidneys...In England they did everything they could do to save her life, had massage therapists come in every day to move her arms and legs for her circulation, etc etc...and she pulled through...if she would of been at county hospital? here? she wouldn't of made it two days...I stayed long periods in Berlin, Spain, England...great docs and hospital care....yes, they are great here (or can be), but it's too much about the bottom line dollars here, to get the best care, most of the time...but that'll start a whole argument here, and I'm not up to it!!!! lol....if someone out there doesnt' agree, that's okay! lol...
Thank you all soooo very much for your support. I've been in limbo so long that while my lower legs are perpendicular to the floor, everything else is parallel. Yeah, I WISH I were that limber, but you get my drift. I'm conflicted about starting tx. Relieved that it looks like it'll start soon. Yet I'm not looking forward to the sx. ...
Mom and I are goin' shoppin'. My new grandbaby is a girl, her name will be(Katie Lee), I can hardly wait til mid July. I'm gunna go buy something cute, in Pink and *Sage green, (my dtr.- in-laws favorite color. Back later with some fun stuff to wrap. Hugs, Grandma to be, Ant already, B P.S. I know Aunt isn't spelled Ant. I do this on porpoise!!!! Gee Gee Gee Gee
You never fail to make me smile, never! I love ant b! who doesn't love porpoises! on purposes!
Oh how fun shopping for new baby! So wonderful! Congrats!
Enjoy the grandbaby shopping!! I will be wishing you well on the 28th and will look forward to your update.
Enjoy the grandbaby shopping!! I will be wishing you well on the 28th and will look forward to your update.