Aa
The beginning is near, YES!!!!!
I finally get to see the Dr.s @ Cedars (Liver transplant/Hep. studies dept.) I see my GI's NP on 2-27 and on 2-28 I go to Cedars @ 8:00 A.M. I can hardly wait. I get my BT results on 2-27, and find out if I'm a candidate for the Protease study. I said I wasn't happy about having to wait til their study starts in late summer, but he said come in and we'll see what we can do. I'm not getting my hopes up TOO much. I've been disappointed every month for the last year now, so I don't elude myself thinking that 'next visit, I'll start tx' anymore. So, if everyone crosses their fingers for me at 8; AM on the 28th, I just might get a start date. Thanks for listening. You folks are sooo great. Anxiously, Ant B P.S. Hugs, fellow Heppers
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!
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.
Deb
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.
Deb
Cross my fingers for you that morning. Good luck !!
LL
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 :(
LL
LL
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 :(
LL
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!
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!
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....
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....
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