How's it going Thip?

I was at Emory today taking an MRI. I was wondering how you and Jimmy
Carter were doing. :)

Thip

2015-08-30 18:40:35 UTC

Post by Seymore4Head
I was at Emory today taking an MRI. I was wondering how you and Jimmy
Carter were doing. :)

I think I'm doing better than poor Jimmy. I have 2 months left,
undetectable at 4 weeks and have remained that way. I had to do battle with
my doctor over taking Laculose and Xifaxan (which I refused), but my ammonia
is now well within normal limits. I'm trying not to worry about relapsing
(Harvoni is almost too good to be true), but other than that, life is good.
How are things on your end?

Seymore4Head

2015-08-30 19:47:01 UTC

Post by Seymore4Head
I was at Emory today taking an MRI. I was wondering how you and Jimmy
Carter were doing. :)

I just found out I have colon cancer. Hopefully they can cut it out
and at the moment, they don't expect me to have to do any chemo. I
also just found out I have osteoporosis from long term use of
Prednisone.

That Laculose is some pretty nasty stuff. I did take it, but I took
much less dosage than I was prescribed. I had to google Xifaxan. So
you are experiencing encephalopathy? Are they asking you not to
drive? The never took my license away but they did recommend that I
not drive.

I guess I shouldn't have included a smiley face when talking about
Jimmy Carter. He is the most recent celebrity I know of going to
Emory.

Thip

2015-08-30 22:48:13 UTC

Post by Seymore4Head
I was at Emory today taking an MRI. I was wondering how you and Jimmy
Carter were doing. :)

I just found out I have colon cancer. Hopefully they can cut it out
and at the moment, they don't expect me to have to do any chemo. I
also just found out I have osteoporosis from long term use of
Prednisone.
That Laculose is some pretty nasty stuff. I did take it, but I took
much less dosage than I was prescribed. I had to google Xifaxan. So
you are experiencing encephalopathy? Are they asking you not to
drive? The never took my license away but they did recommend that I
not drive.
I guess I shouldn't have included a smiley face when talking about
Jimmy Carter. He is the most recent celebrity I know of going to
Emory.

I've always said Carter is a very, very good man, just a very bad President.
I sure don't wish him any ill.

I honestly don't know if I have encephalopathy or not. My ammonia was high.
They just called and told me to take these two drugs. So I did, and I got
extremely sick. I called, they told me to stay off them a week and try
again. So I did, and got extremely sick. I went in for my regular
appointment but saw the PA, and he discontinued the Xifaxan. I asked him if
I had HE and he told me to ask Dr. West (how?!). They drew some blood,
called a few days later, and told me to start the Xifaxan again. I did, and
got very sick and very, very lethargic. One day I set my stove top on fire,
and I just sat there and thought, "Damn, I have to get up and put that out."
That was the day I quit the drugs (this was all over a 3-month period). I
called and told them under no circumstances was I taking them. Three weeks
later, my ammonia was dead normal and I feel fine. No one's told me not to
drive. I'm seeing Dr. West the 9th and I've got my battle armor on. I am
not a happy Mama.

I'm so sorry about the cancer. Sometimes it seems like bad health is a
terrible gift that keeps on giving. I don't know much about osteoporosis
since that's one thing I've somehow managed to avoid. How will they treat
you for the conditions? I assume your prognosis is good since you don't
seem to be very upset, or maybe you're much calmer than I am. :-) I hope
you'll stay in touch and let me know how it goes. We old farts have to
stick together, you know. By the way, I caught up with Cody and he's doing
well. He did the Viekira and cleared the virus, and his liver damage
reversed considerably. I used to get so mad at him! I never disliked
him--he was kind of like the bratty little brother that exasperates the heck
out of you, but you love him anyway. Elmo and Waterspider are also doing
very well. Cactus Jammies is taking Harvoni and I haven't heard much from
him lately. Sourdough got mad at me and unfriended me, but I haven't yet
really figured out why he was so mad. High ammonia, maybe? :-)

Seymore4Head

2015-08-31 00:59:08 UTC

Post by Seymore4Head
I was at Emory today taking an MRI. I was wondering how you and Jimmy
Carter were doing. :)

I just found out I have colon cancer. Hopefully they can cut it out
and at the moment, they don't expect me to have to do any chemo. I
also just found out I have osteoporosis from long term use of
Prednisone.
That Laculose is some pretty nasty stuff. I did take it, but I took
much less dosage than I was prescribed. I had to google Xifaxan. So
you are experiencing encephalopathy? Are they asking you not to
drive? The never took my license away but they did recommend that I
not drive.
I guess I shouldn't have included a smiley face when talking about
Jimmy Carter. He is the most recent celebrity I know of going to
Emory.

I've always said Carter is a very, very good man, just a very bad President.
I sure don't wish him any ill.
I honestly don't know if I have encephalopathy or not. My ammonia was high.
They just called and told me to take these two drugs. So I did, and I got
extremely sick. I called, they told me to stay off them a week and try
again. So I did, and got extremely sick. I went in for my regular
appointment but saw the PA, and he discontinued the Xifaxan. I asked him if
I had HE and he told me to ask Dr. West (how?!). They drew some blood,
called a few days later, and told me to start the Xifaxan again. I did, and
got very sick and very, very lethargic. One day I set my stove top on fire,
and I just sat there and thought, "Damn, I have to get up and put that out."
That was the day I quit the drugs (this was all over a 3-month period). I
called and told them under no circumstances was I taking them. Three weeks
later, my ammonia was dead normal and I feel fine. No one's told me not to
drive. I'm seeing Dr. West the 9th and I've got my battle armor on. I am
not a happy Mama.
I'm so sorry about the cancer. Sometimes it seems like bad health is a
terrible gift that keeps on giving. I don't know much about osteoporosis
since that's one thing I've somehow managed to avoid. How will they treat
you for the conditions? I assume your prognosis is good since you don't
seem to be very upset, or maybe you're much calmer than I am. :-) I hope
you'll stay in touch and let me know how it goes. We old farts have to
stick together, you know. By the way, I caught up with Cody and he's doing
well. He did the Viekira and cleared the virus, and his liver damage
reversed considerably. I used to get so mad at him! I never disliked
him--he was kind of like the bratty little brother that exasperates the heck
out of you, but you love him anyway. Elmo and Waterspider are also doing
very well. Cactus Jammies is taking Harvoni and I haven't heard much from
him lately. Sourdough got mad at me and unfriended me, but I haven't yet
really figured out why he was so mad. High ammonia, maybe? :-)

I am glad to here that there are a few more options on treating HepC
than there was in 2000. I learned that I HepC and end stage liver
disease at the same time. At that time, I was told that my liver was
too far gone to talk about any HepC treatment. It is good to hear
that treatment can prolong the damage and even reverse it. If you are
undetectable at 4 weeks, that is a pretty good sign. So you have been
taking treatment for 4 weeks plus 2 months? Three months total
treatment? Things have changed. When I did HepC treatment around
2004, I went 10 months with one drug which lowered my count but not
cleared and switched to another drug and went a full year (cleared at
4 weeks too). Don't ask me what the drugs were. I would have to look
them up to remember. I do remember that part of the treatment was
Ribavirin. I guess they no longer use that nasty stuff. I hope not.

Setting your stove on fire seems like it could be related to
encephalopathy. Staring at the fire long enough to have to consider
putting it out also seems like it could be encephalopathy.

As for my osteoporosis my doctor scheduled my return visit too soon
and the test results had not got back from the lab. I only learned
about it after I got the results back in the mail. I will have to
make another visit to find out about treatment.

A lot of my current health problems come from drugs I have taken for
HepC and anti-rejection.

I have no problems with Jimmy Carter as a president or as a person. He
seems about as honest as you can be and still be a politician. The
only reason I mentioned him was that he could have been someone I
could have bumped into while at Emory.

Thip

2015-08-31 13:04:04 UTC

Post by Seymore4Head
I was at Emory today taking an MRI. I was wondering how you and Jimmy
Carter were doing. :)

I just found out I have colon cancer. Hopefully they can cut it out
and at the moment, they don't expect me to have to do any chemo. I
also just found out I have osteoporosis from long term use of
Prednisone.
That Laculose is some pretty nasty stuff. I did take it, but I took
much less dosage than I was prescribed. I had to google Xifaxan. So
you are experiencing encephalopathy? Are they asking you not to
drive? The never took my license away but they did recommend that I
not drive.
I guess I shouldn't have included a smiley face when talking about
Jimmy Carter. He is the most recent celebrity I know of going to
Emory.

I've always said Carter is a very, very good man, just a very bad President.
I sure don't wish him any ill.
I honestly don't know if I have encephalopathy or not. My ammonia was high.
They just called and told me to take these two drugs. So I did, and I got
extremely sick. I called, they told me to stay off them a week and try
again. So I did, and got extremely sick. I went in for my regular
appointment but saw the PA, and he discontinued the Xifaxan. I asked him if
I had HE and he told me to ask Dr. West (how?!). They drew some blood,
called a few days later, and told me to start the Xifaxan again. I did, and
got very sick and very, very lethargic. One day I set my stove top on fire,
and I just sat there and thought, "Damn, I have to get up and put that out."
That was the day I quit the drugs (this was all over a 3-month period). I
called and told them under no circumstances was I taking them. Three weeks
later, my ammonia was dead normal and I feel fine. No one's told me not to
drive. I'm seeing Dr. West the 9th and I've got my battle armor on. I am
not a happy Mama.
I'm so sorry about the cancer. Sometimes it seems like bad health is a
terrible gift that keeps on giving. I don't know much about osteoporosis
since that's one thing I've somehow managed to avoid. How will they treat
you for the conditions? I assume your prognosis is good since you don't
seem to be very upset, or maybe you're much calmer than I am. :-) I hope
you'll stay in touch and let me know how it goes. We old farts have to
stick together, you know. By the way, I caught up with Cody and he's doing
well. He did the Viekira and cleared the virus, and his liver damage
reversed considerably. I used to get so mad at him! I never disliked
him--he was kind of like the bratty little brother that exasperates the heck
out of you, but you love him anyway. Elmo and Waterspider are also doing
very well. Cactus Jammies is taking Harvoni and I haven't heard much from
him lately. Sourdough got mad at me and unfriended me, but I haven't yet
really figured out why he was so mad. High ammonia, maybe? :-)

I am glad to here that there are a few more options on treating HepC
than there was in 2000. I learned that I HepC and end stage liver
disease at the same time. At that time, I was told that my liver was
too far gone to talk about any HepC treatment. It is good to hear
that treatment can prolong the damage and even reverse it. If you are
undetectable at 4 weeks, that is a pretty good sign. So you have been
taking treatment for 4 weeks plus 2 months? Three months total
treatment? Things have changed. When I did HepC treatment around
2004, I went 10 months with one drug which lowered my count but not
cleared and switched to another drug and went a full year (cleared at
4 weeks too). Don't ask me what the drugs were. I would have to look
them up to remember. I do remember that part of the treatment was
Ribavirin. I guess they no longer use that nasty stuff. I hope not.
Setting your stove on fire seems like it could be related to
encephalopathy. Staring at the fire long enough to have to consider
putting it out also seems like it could be encephalopathy.
As for my osteoporosis my doctor scheduled my return visit too soon
and the test results had not got back from the lab. I only learned
about it after I got the results back in the mail. I will have to
make another visit to find out about treatment.
A lot of my current health problems come from drugs I have taken for
HepC and anti-rejection.
I have no problems with Jimmy Carter as a president or as a person. He
seems about as honest as you can be and still be a politician. The
only reason I mentioned him was that he could have been someone I
could have bumped into while at Emory.

They still use ribavirin. Nasty drug! It's park of the Viekira Pak and
some doctors prescribe it along with Harvoni. There are also some poor
souls doing the the old interferon/riba regimen. I belong to a worldwide
hep c support group on FB and the variety of drugs and prescribing is
mind-boggling. I've noticed the trend in new drugs is targeting the
specific genotype, rather than one-size-fits-all. Harvoni is especially
effective against 1a. It's encouraging, but the drugs are so expensive that
only the very sick have access to them. My treatment would have cost
$189,000 out-of-pocket, but so far I've been charged a whopping $6.06.
There appears to be a thriving industry in India marketing them, because
they cost as little as 1/100.

I'm doing Harvoni for 24 weeks due to my 3 previous failures. I started in
June and will end in October. And yes, what happened to me sounds like HE,
but the fact remains I was far more active and alert off the drugs (before I
started, high ammonia and all), and I became more active and alert once I
quit them. My doctor's office said my reaction to the stove fire was
probably due to high ammonia levels, but when I actually took the blood test
3 weeks after stopping the drugs it was dead normal. Yes, that could be the
drugs finally working, but at the time of the fire my ammonia was only
slightly elevated. I was just plain sick as a dog. The extreme lethargy
was only one part of it. I decided then, and believe now, that life isn't
worth living if I can't live. Sitting on the sofa is not living. I won't
take the Xifaxan or Laculose again no matter how much they threaten me with
all those dire consequences. I'm 62 so there aren't all that many years
left. I'll take my chances.

2015-09-01 16:17:32 UTC

"Thip" schreef in bericht news:***@mid.individual.net...

<knip>

The extreme lethargy
was only one part of it. I decided then, and believe now, that life isn't
worth living if I can't live. Sitting on the sofa is not living. I won't
take the Xifaxan or Laculose again no matter how much they threaten me with
all those dire consequences. I'm 62 so there aren't all that many years
left. I'll take my chances.
---------------
You are so right Thip, but I do hope that you get all healthy and have a few
more decades to enjoy it!

SF

ps question to all do any of you have problems with osteoartritis in the
fingers?

Thip

2015-09-01 16:55:02 UTC

Post by SF
<knip>
The extreme lethargy
was only one part of it. I decided then, and believe now, that life isn't
worth living if I can't live. Sitting on the sofa is not living. I won't
take the Xifaxan or Laculose again no matter how much they threaten me with
all those dire consequences. I'm 62 so there aren't all that many years
left. I'll take my chances.
---------------
You are so right Thip, but I do hope that you get all healthy and have a
few more decades to enjoy it!
SF
ps question to all do any of you have problems with osteoartritis in the
fingers?

Thanks. :-)

I have no osteoarthritis (knock on wood). I did have that
somebody-beat-me-with-a-board feeling when I got out of bed (and sometimes
all day), but since the virus died so has that.

2015-09-02 11:33:51 UTC

I would be so happy if that would one day be the outcome for me. My previous
doctor scared me by saying that even when you get virus free you still might
feel the fatigue :(
SF

------------
"Thip" schreef in bericht news:***@mid.individual.net...

I did have that
somebody-beat-me-with-a-board feeling when I got out of bed (and sometimes
all day), but since the virus died so has that.

greyhackles

2015-09-02 04:11:12 UTC

On Sun, 30 Aug 2015 18:48:13 -0400, "Thip" <***@privacy.net> wrote:
[...]

Post by Thip
By the way, I caught up with Cody and he's doing
well. He did the Viekira and cleared the virus, and his liver damage
reversed considerably. I used to get so mad at him! I never disliked
him--he was kind of like the bratty little brother that exasperates the heck
out of you, but you love him anyway. Elmo and Waterspider are also doing
very well. Cactus Jammies is taking Harvoni and I haven't heard much from
him lately. Sourdough got mad at me and unfriended me, but I haven't yet
really figured out why he was so mad. High ammonia, maybe? :-)

"Old Home Week" ;)

Cheers!

Thip

2015-09-02 23:01:36 UTC

Post by greyhackles
[...]

"Old Home Week" ;)
Cheers!

Facebook has some positive aspects. :-)

2015-09-01 16:20:27 UTC

"Seymore4Head" schreef in bericht news:***@4ax.com...

<knip>

I just found out I have colon cancer. Hopefully they can cut it out
and at the moment, they don't expect me to have to do any chemo. I
also just found out I have osteoporosis from long term use of
Prednisone.
-------------
Although I don't really know you I feel for you. What a terrible draw of
luck. Wish you strength!

SF

Seymore4Head

2015-09-01 19:07:17 UTC