Hi I'm new and I'm not happy

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holmes
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/1/2010 10:51 AM (GMT -7)   
shocked   mad sad cry
Where can I vent without causing others to lose hope? Holmes

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/1/2010 11:35 AM (GMT -7)   

Hi, Holmes!  Do you have liver disease or does a loved one have it?  If so, tell us what is going on and vent away!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

spookyjan
Regular Member


Date Joined Jun 2010
Total Posts : 74
   Posted 9/2/2010 4:39 AM (GMT -7)   
vent here i do it all the time..tell others what is the problem an they will help as they have me,it really helps to vent on here..i wish you well spooky

holmes
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/3/2010 9:03 AM (GMT -7)   
Hi Connie, thanks for writing back. 
 

This is not a new subject for me, I have to vent.

 

I have had this darned Hep C, Geno 1 for 33 years from a stinking blood transfusion.  The reason why I sound mad is I just completed the 48 week treatment in June.  My viral load was negative from about week 6 until the very end; I just found out my viral load is 502,XXX. 

 

 I'm shocked and mad that it would come back after just 2 months. I went into it knowing there are no guarantees, but I was so hopeful that the horrible treatment was worth the end result.  I don't believe that anymore.  I know that sounds to be so pessimistic, but right now I am.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/3/2010 9:23 AM (GMT -7)   
Hi Holmes and welcome.   Sorry that you didn't have better response to the treatment.  Your feelings of anger and shock are normal at this point.  But you can not let your disappointment color your fight against this disease.   Pick yourself back up and keep fighting with everything you have.   Use that anger constructively against liver disease.  
 
There is a new treatment (a 3 drug combo), that is supposed to come out next year......It's supposed to be for a shorter duration and the results are looking promising.  Connie knows a lot more about it than I .   I am sure she will chime back in shortly.  
 
Don't give up.......when life gives you lemons.......make lemonade.......
 
Lot's of thoughts and prayers....... 
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/3/2010 3:24 PM (GMT -7)   

Hi, Holmes!  Well, that sucks!  I would be angry, too!  But I know it happens.  I, myself, am waiting for the 3-drug treatment that PG mentioned.  It's in final trials now and should be available early next year.  It has a 75% success rate in genotypes 1a and 1b.  By the time it is ready, we should know the relapse rate, too.  The Vertex version adds a 3rd drug, Telaprevir.  Other versions are similar.  It only has to be taken for 24 weeks.  So take a breather, while still keeping a healthful diet, getting plenty of rest, etc.  Then, when the treatment is FDA approved next year, perhaps you will be ready to try again.

Big hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 9/4/2010 2:39 PM (GMT -7)   
Holmes,
Welcome to my world. I was infected from a transfusion at 14, after a country doctor sewed up a puncture wound, which became gangrenous. The procedure to open my infected leg was the reason for the transfusion. Forty years later, I discovered I had Hep C. Then I did 48 weeks of interferon/ribavirin and they said the virus was undetectable. A little over 3 months later, I had a cerebral hemorrhage, a few weeks later a seizure and my liver began to fail. Two and a half months later, after being hospitalized and then in rehab, I was accepted in a liver transplant program. Five years later (last July) I received a liver. Except the for call to receive a transplant, I listened to nearly 10 years of phone calls and emails from doctors with bad news. I've become used to it. All of the medical people I've dealt with have been great. They hate to deliver (pardon the pun) bad news, just as much as we hate getting it. Stay with it, and don't get discouraged. Be well.
"No good deed goes unpunished."

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/4/2010 4:32 PM (GMT -7)   
well said and put David... keep ur chin up Holmes... sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/4/2010 7:59 PM (GMT -7)   
Hi Holmes, My husband also did the treatment and was virus free for 6 months before it came back.

Hang in there. They are making progress on a cure for this disease.
Butterflythree
 
There is always hope!

holmes
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/6/2010 8:44 AM (GMT -7)   
Thank you all so much for the encouraging words but I don't want to do the treatment again or any other treatment.

It was awful; I think I had every side effect there is on top of being anemic. I took procrit for the anemia along with the peg and copeg. I couldn't go to work and didn't do much else but lay in bed a lot and feel miserable. I know a guy who had a liver transplant and then the Hep C came back.

Right now I don't want any more surgery or treatment. I was hospitalized for dizziness this past year and through a CT Scan of my head they found a pituitary brain tumor. (nothing to do with the Hep C) I'm not a happy camper and I know I'm feeling sorry for my self but I'm just disgusted with it all. Thanks

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/6/2010 11:50 AM (GMT -7)   

Holmes, what are they doing about the tumor?  Do they think it's benign?  I honestly know where you are coming from.  When I was first diagnosed with hep C back in '93, I tried the only treatment available at that time, Interferon injections 3 x a week.  I took it for about 6 weeks and my doctor was alarmed because my white count dipped so low.  He tried cutting it down to twice a week and then tried decreasing the dosage, but the white count kept falling and I was catching every germ going around in my office.  So he took me off treatment.  A couple of months later, I had different insurance and a different doctor, and tried  Interferon again.  After 3 weeks, the same thing was happening, so I took myself off it that time.  I decided to do nothing and just live with the hep C.  I did get increasingly fatigued, to the point where I could only work P/T.  I started out with 28 hours a week, but by the time I got approved for SSD in '05, I was down to about 12 hours a week.  Around the same time, I was diagnosed with liver cancer.

So you can just live with the hep C and not do treatment again and you may be okay for awhile.  But eventually it will start affecting you.  The risk of liver cancer in untreated hep C is very high.  After the cancer was dealt with, my hepatologist was nudging me to try the "combo."  However, I felt I could not put my body through any more after having bilateral hip replacements and revisions and cancer treatment and surgery.  In Jan. of this year, I was told about the new treatment that will be available next year and because it's taken for half the amount of time as the combo, and because the success rates are so high, I've decided to try it when it becomes available.  I may not be able to handle it, but I'm willing to try.  You are right about transplant patients with hep C...they still have the C, the transplant doesn't take that away.  It's in the blood stream.  Transplant just gives them a new liver.  Since hep C takes years to damage the liver, if a person has a transplant after age 50, he could live a normal life span.

That's why I said to give yourself a break.  Take time off from doctors and treatment for hep C for awhile.  Maybe by this time next year, you will be willing to give the new treatment a try.

Meanwhile, that pituitary tumor is concerning.  What is your doctor saying about that?

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/6/2010 1:38 PM (GMT -7)   
Holmes, You have a right to feel sorry for yourself and disgusted. You are going through a lot. Just don't give up. I always try to remind myself that there are others that are going through far more than my family. As I've learned from hearing everyone's stories on this site. I know that this disease can be very discouraging. My husband has cirrhosis, and I am really having a hard time keeping him encouraged. Today, it seems that none of my words are helping and he is ready to give up.

Just know that there are many people praying for you.
Butterflythree
 
There is always hope!

holmes
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/8/2010 9:35 AM (GMT -7)   

The brain tumor is supposedly benign; will recheck next month. 

I went through Interferon treatments in the 90's and had low white cells too.  

I am going to give my body the break that it deserves for the next year and then some.  My liver function enzymes, etc. is good, so I have time to decide.

The amazing part of this is I knew I had Hep C two months after the transfusion in '77 with an acute attack and it never bothered me again. My liver profiles were up and down through the years but I always had energy and I know I will have energy again once the treatment is completely out of my body.  The doctor told me yesterday I'm not even close to a transplant.  I hope she's right.  Thanks for the input from all of you.

Take care! 


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 9/8/2010 11:10 AM (GMT -7)   
so nice to hear good news!! Sandi

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/8/2010 12:31 PM (GMT -7)   
Holmes, glad to hear the tumor is benign and that they are keeping a check on it.  You deserve a break!  Good to know you are not end-stage.  I've read that 80% of those who have acute hep C go on to have chronic active hep C.  I didn't even know when I contracted it as I was doing IV drugs--I know the year I got it, but don't remember feeling sick.  If I was, I probably just thought I needed more drugs.
 
Please check in from time to time and let us know how you are doing!
 
Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
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