Dying with Hep-C & HIV

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davelh
New Member


Date Joined Oct 2006
Total Posts : 2
   Posted 10/22/2006 12:58 PM (GMT -7)   
I have been HIV positive for over 23 years and doing very well.  Two months ago, when doing my blood tests, the doctor found my Liver Count to be high.  This was the first time any liver problem has ever been found.
 
He sent me for a Hep C and it came back positive.  I then went in for a liver biopsy and it came back with fibrosis stage 4, inflammatory grade 3, which I found out is not good.  I'm 57 years old, genotype #1 and with HIV+ and Hep C, the prognosis is not in my favor for any chance of recovery. 
 
I have been reading up on the disease and the outlook is not rosy.  I feel I will be dying of the disease within a short time and was wondering if anyone out there knows what kind of death it will be. 
 
What are the final stages of liver diseas like and what kind of death do I have to look forward to?   I am well educated and know that any organ failure is a painful death.  I just want to know what kind of pain and suffering I'm in for, down the line and for how long.
 
Can anyone tell me? confused

Post Edited (davelh) : 10/22/2006 2:10:52 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/22/2006 2:31 PM (GMT -7)   

Hi, Dave, and welcome.  Are you taking meds for the HIV?  I would think you must be, to be living with it so long.  Apparently, it has not developed into full blown AIDS.  Have you seen a hepatologist yet about the hep C?  There are treatments available.  I was diagnosed with hep C in March of '93 per biopsy.  Have you had a biopsy or just blood test?  Only a biopsy can give a true picture of your liver's condition and reveal whether you have chronic active hep C or just chronic hep C.  "Active" means it is still attacking the liver.  I took treatment in the beginning, but it wasn't working for me and I developed very low white counts, so was taken off.  A little over a year ago, I was diagnosed with a very large cancerous liver tumor (a direct result of untreated hep C.)  It had metastasized to the inferior vena cava, rendering it inoperable.  However, I had 2 different forms of treatment at Mayo, and most of the cancer has been killed.  I needed major surgery on my hip, so I was allowed to go ahead and have that done a month ago.  Once I heal, I will either have the rt. lobe of my liver removed or more treatment.

Don't automatically think your time on earth is over.  There are things that can be done.  Seek out a good hepatologist and find out where you really stand.  Hep C doesn't kill.  It's the fact that it can turn into liver failure or liver cancer that makes it so dangerous.

Best of luck to you, and get ready to fight for your life!

Hugs,

Connie

 


davelh
New Member


Date Joined Oct 2006
Total Posts : 2
   Posted 10/22/2006 2:50 PM (GMT -7)   
Yes, I've been on Meds for HIV since 1995 and have done well on them. My T-cells are high and I have an undetectable viral load, so things were going great.

As for the having the liver biopsy, yes I had it 2 weeks ago. That's when I found out how bad I was. The thing that makes my Hep C so bad is that I am over 55, HIV+ and am a geotype #1, which deminishes my chances considerably, as per the articles I have read on the internet.

I have a doctors appointment next week with a specialist and he will probably start me on the meds and shots ASAP. Not sure how I will react to them but hope I tolerate them well.

Thanks for the pep talk, but I hadn't planned on giving up just yet. After all, I fought my HIV this long and don't plan on giving in to this disease either.

Dave

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 10/22/2006 7:32 PM (GMT -7)   
hello dave and welcome,
sorry that youve got more health issues to deal with,,,but it sounds like you have the right attitude to make it through this. good luck and please keep us posted about what your dr says about treatment and let us know how your doing,,,you are not alone.
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/23/2006 9:39 PM (GMT -7)   

Dave, I am certainly glad you are not giving up!  BTW, I'm 63, though I don't have HIV.  It's good that your T cells are high, as hep C treatment will mess with your immune system.

Let us know how you do on treatment.

Healing thoughts,
Connie

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 10/24/2006 12:15 AM (GMT -7)   
Hi Dave, Welcome to the Forum.
I'm sorry to read of your illness. Just when you think all is going well something comes out of the blue. Anyway, hope the specialist is able to give you treatment that will slow down your liver problems.

I'm 58 now and have had autoimmune hepatitis with cirrhosis since 2004, at least that's when it was daignosed. Possibly had it 20 years + prior. But I'm on meds and seeing the "witch doctor" (Chinese medicine - herbs and acupuncture) and feeling really well at the moment.


Keep us posted. you will find real friends here. Everyone cares so much.


Take care. Marg
 


JEFF123
Regular Member


Date Joined Apr 2006
Total Posts : 40
   Posted 10/31/2006 10:52 AM (GMT -7)   
Daveih, when you get a answer to your question please let me know. I dont do pain very well...good luck...jeff

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/29/2006 10:12 AM (GMT -7)   
Daveih--
I am a hep c survivor and have autoimmune disease, though the other kind, lupus/sjogrens that was caused believe it or not, from HepC! The virus caused my immune system to fight harder than normal and it never shut off, or, possibly I always had it and never knew.... I was treated for acute hep C (I was given a year to live without tx) in 1994 with alpha-interferon, the old tx, and I don't know what genotype because testing was not that sophisticated at that time, or my doc didn't let me in on that part. I was very very sick and deteriorating very fast, took treatment, which was extremely difficult for me given my already hyperimmune system. Anyway, I've been virus free since the last month of my treatment and I continue to be up until last week. I choose to believe that I have been cured, since the virus is not present in any detectable amount nor has it been. This is a gift from God for me. I have other, severe health problems that I'm dealing with right now, but that one I want to believe was licked. My liver did heal, though is not perfect and I have to take care of it and be good to it. I'm so happy that you are doing so good on the HIV side and that, aside from the new stuff, that is doing great now. Livers can get better, and viruses can be put into remission for long enough that it doesn't matter. I used to hate pain, now I take less pain meds so I can feel pain, so I know if I'm sick or not and need to go to the doc, and so I'm not so stoned all the time and can enjoy family and friends. Whatever the future holds for you, you can make sure it doesn't involve suffering by telling them this stuff upfront. I have been on immunosuppressants now and major shots of decadron and stuff now and my hep has not come out of "remission", though I've managed to catch every passing cold and don't leave the house much. The posts here have a lot of info in them, some of them way over my brainfogged head. There are some great clinics for liver stuff, I went to Borland-Groover and all they do is livers and GI research and stuff. Mayo is obviously great. These are the kinds of places you will probably want to at least visit, if not for second opinions. I'm not sure they deal so much in statistics as they do solutions. My path has been really rough and painful at times due to lupus and stuff, but I'm far from croaking. Have faith in the docs, I'm sure your combo is one they see alot and know how to deal with. They do amazing things nowadays, and you can make it clear to the docs that you want to be painfree. Hepc itself doesn't hurt much, really, most people don't know they have it. The stuff it causes does hurt and sometimes so do the fixes for them. I know some really bad painful diseases like scleroderma or muscular dystrophy or some other problems that people have are very slowly progressing, disfiguring, painful, and hard to control and these people have it so bad sometimes. And your liver can get pretty bad before you ever notice it and still bounce back. Just make sure that the inflammation/fibrosis is from the hepc infection (get viral load/how much virus you have in your test result) and not meds or some other cause. In my case, I imagine that I'm sick enough that if it ever came back I would go fairly quick and I would sacrifice time for pain relief if things were really bad because I'm a baby about it. Hopefully, this is not a decision that I will have to face anytime soon.
Marji

"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek--I'm not a trekkie but this one was funny!

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