Re: movickers

September 7, 2009

well i took Bobby's advice and I " camped " out at the hospital on Saturday

morning. Even though it is a holiday weekend his doctor still made the rounds

in the morning but without his normal entourage. I wanted to find out about

the game plan for Rex.

Well, abijann, you called it. The doctor is very concerned about the kidneys

but the lastest blood test showed a reduced creatitine level of 1.8 and he was

going to resume the diuretics. In fact he increased the dosage of the

Spironolactone to 100 mg and kept the lasix at 80 mg. Rex was finally

released yesterday and seems to be doing good. He has to get blood tests on

Tuesday and Thursday. So we will see what happens next.

His new MELD was submitted at a 27. I kidded with him that I knew he could be

inpatient but it really is not polite to keep jumping in front of so many other

people that have been waiting.

i know we have a very rocky road ahead of us and sure hope that we get " the

call " in the forseeable future.

Want to thank everyone for their support and advice. It is good to know that

you understand what is going on.

>

> The Albumin, that they give Rex, may help slow down the build up

> of the fluid in the abdomen...but, it is only temporary as the

> amount of albumin will decrease very fast. I have never heard of them taking

a patient back off diuretics when they have sodium build up. They usually

reduce the dosage down as far as possible.

> Albumin has to stay at a normal level in the blood for the leaking

> of the fluid to stop from the vessels...this doesn't happen with

> those who have cirrhosis. The fluid will continue to build up, no

> matter what is done.

> I would not be surprised that he, shortly, will become higher on

> the transplant list because of this. The faster the build up of

> fluid, and the more often it has to be drained, the more the

> patient will need the transplant sooner. I'd just wait a little

> bit. It seems like they are very concerned about his kidney

> function now...they may be just trying to see if this will help

> or hinder the kidneys further. He may be placed back on the

> diuretics if it hasn't been beneficial.

>

> The disease is a nightmare. Learning to take one day at a time

> and to accept what goes on or happens if difficult. As long

> as you can be with those who need you, the better chance of them

> pulling through it all. Best wishes to you both.

>

September 7, 2009

i am so glad you took rex,girl,and thrilled that he is doing good,what a

blessing!praying for the both of you,much love barby

> >

> > The Albumin, that they give Rex, may help slow down the build up

> > of the fluid in the abdomen...but, it is only temporary as the

> > amount of albumin will decrease very fast. I have never heard of them

taking a patient back off diuretics when they have sodium build up. They

usually reduce the dosage down as far as possible.

> > Albumin has to stay at a normal level in the blood for the leaking

> > of the fluid to stop from the vessels...this doesn't happen with

> > those who have cirrhosis. The fluid will continue to build up, no

> > matter what is done.

> > I would not be surprised that he, shortly, will become higher on

> > the transplant list because of this. The faster the build up of

> > fluid, and the more often it has to be drained, the more the

> > patient will need the transplant sooner. I'd just wait a little

> > bit. It seems like they are very concerned about his kidney

> > function now...they may be just trying to see if this will help

> > or hinder the kidneys further. He may be placed back on the

> > diuretics if it hasn't been beneficial.

> >

> > The disease is a nightmare. Learning to take one day at a time

> > and to accept what goes on or happens if difficult. As long

> > as you can be with those who need you, the better chance of them

> > pulling through it all. Best wishes to you both.

> >

>

September 8, 2009

Barby, obviously since I am answering you, this one came through. I think

there is a space between the dashes after you name and In. that might have

made the difference. Thanks. I put mine on top of the previous message

too, so that people don't have to seach through an old message to see what I

posted. I will watch it too that I don't put the two together that way.

Jan H

On Tue, Sep 8, 2009 at 6:43 AM, pinkmeetsblue wrote:

> for real jan?? i havent noticed it either,i always start my messages

> right in front of the in liver support hmmmmmmmmm,anyone else having this

> problems,i will try it a different way ,let me know if this one gets to you

> ok. i know awhile ago yahoo wasnt showing my post on my conp,unless i opened

> them,its still like that unless i do a new post, but my replys i have to

> open them to see them weird huh,ok let me know if you get this one much love

> barby

> > > > >

> > > > > The Albumin, that they give Rex, may help slow down the build up

> > > > > of the fluid in the abdomen...but, it is only temporary as the

> > > > > amount of albumin will decrease very fast. I have never heard of

> them

> > > taking a patient back off diuretics when they have sodium build up.

> They

> > > usually reduce the dosage down as far as possible.

> > > > > Albumin has to stay at a normal level in the blood for the leaking

> > > > > of the fluid to stop from the vessels...this doesn't happen with

> > > > > those who have cirrhosis. The fluid will continue to build up, no

> > > > > matter what is done.

> > > > > I would not be surprised that he, shortly, will become higher on

> > > > > the transplant list because of this. The faster the build up of

> > > > > fluid, and the more often it has to be drained, the more the

> > > > > patient will need the transplant sooner. I'd just wait a little

> > > > > bit. It seems like they are very concerned about his kidney

> > > > > function now...they may be just trying to see if this will help

> > > > > or hinder the kidneys further. He may be placed back on the

> > > > > diuretics if it hasn't been beneficial.

> > > > >

> > > > > The disease is a nightmare. Learning to take one day at a time

> > > > > and to accept what goes on or happens if difficult. As long

> > > > > as you can be with those who need you, the better chance of them

> > > > > pulling through it all. Best wishes to you both.

> > > > >

> > > >

> > >

> > > ------------------------------------

> > >

> > > Group Email: livercirrhosissupport

> > > web address:

> > > http://groups.yahoo.com/group/livercirrhosissupport/

> > >

September 9, 2009

-Dave this wasn't directed to me but I just wanted to tell you that I know

EXACTLY how you feel. I don't have the more serious issues that many here are

and have experienced but the fatigue, the anxiety, hostility, leg pain,

headaches, liver pain, stomach aches, nausea, GERD, itching is all there for me

too. Like you my doctors don't seem to really be concerned since I'm not dying

yet. Not on the OUTSIDE anyway...I wish I had answers for you but can only offer

my encouragement to never give up hoping...Best wishes~~~Debbie-- In

livercirrhosissupport , DTDaven7398@... wrote:

>

> all right friend, i need your help, before this month i was doing pretty

> good health wise, there is so much i dont understand about hep c, the bull

> shit doctor i got are not explaining what i need to know either, they just

> tell me dont worry i am not ready for the transplant list. While i am glad

> to hear that i am having the most hurtful issues in the world and i dont

> know what the hell to do with the pain. Hep c is nerve raking. I use to

have

> much energy now i can hardly get out of bed. i dont have the stomach

> swelling i read about. but head aches, leg aches, joint pain is getting the

> best of me. I have Gerd also, gastro reflux, i dont know what type of test

> ot ask for. basically i dont even know the hell you guys are talking about

> when you say en stage. i dont understand the hep c count yes i am lost of

> this. That is one of my reason, why i will die trying to form a help group

> that will reach out to hep c patient and tell it like it is. i am suppose

> to see my liver doctors every 6 months for blood work. so far so good. But

> at the moment i am weak as hell and agitated, nervous and head aches,

> itching, shit i just dont understand, leg swelling, yes i need your help i

got

> to the doctor on friday, i dont know what to ask for or what to expect.

> PLEASE SHINE SOME LIGHT ON THIS. YOUR GOING OUT OF MY MIND (THOMAS IN

> CHICAGO)

>

September 9, 2009

Dave, I would heed my doctors advice. There is so little known about HepC, as

of date no cure just a hope of having it become untraceable. One thing Rex has

not had is a lot of pain, he does get those notorious leg cramps though. The

term " end stage " means exactly what it says….your liver is in the end stage of

its functionality. It is in essence slowing becoming less and less efficient.

Rex was going to his gastroenterologist for over 4 years before he was told he

was at the point of being placed on the transplant list. That happened this past

December. Even though we knew it was inevitable it was very hard to hear. He

had to stop work alittle over 2 years ago because he was so fatigued and he

suffers from that incredible itching. Sometimes I think he is going to lose

his mind he is in so much agony. He has tried every medication to no avail the

itching just keeps getting worse and worse. In fact it was because of the

itching that his Hep was diagnosed. He went to a dermatologist because he

thought that he had a skin problem. Well the doctor did a blood test on him

and the god awful results came back. It took time to comprehend the whole

issue and we were left floundering around on what doctor to go see. We started

at a local gastroenterologist and he really did not seem to care. After one

visit we were leaving the office and the nurse there stopped us and started

asking us questions, it just so happened that she was leaving the practice that

day and she advised us to get far from this guy. She went so far as to call

the current doctor we are going to and setting up our first appt. I have been

so thankful to that woman. She really was an angel to us and steered us in the

right direction.

Dave if you do not feel comfortable with your doctor, if you do not feel you are

getting the attention you should be getting, you are not having your questions

answers ---switch doctors. This is a hideous disease and you have to trust

them with your life. You must have confidence in your doctor and his team. The

Chicago area has to have some very good hospitals.

One thing you may want to consider is a mild anti-anxiety drug to take the edge

off things, it can make a world of difference. Ask your doctor about the

results of your blood test or better yet get a copy of it for your file. You

also have to remember to take it one day at a time – today may not be so good

but tomorrow could be a really good day.

Take care –