Post treatment Hell

Good day,

I would like to start this forum with prayers for all those that are traveling on the hep  c  trail. If you just found out that you have hep c or you been though the interferon nightmare or a family member that had to put up with us before or after my heart felt prayers go out and continue for all.

I'm going to tell my story mostly because it may help someone else, but it my help me heal also...I 18 months post treatment with no sign of the Hep C virus and still a mess.

In August of 2003, I was told I had the Hep C virus.  It was devstating to me.  I was in the middle of a very successfull career and with everything to look forward to.  In November, the biopsy came back with Type 1 Hep C-stage 3 liver disease and a 12 million viral count. Again, things started to stack up in my mind,  the Dr. lined my options up, I chose the combintion therapy based on what the DR. told me. 40% success rate with mild to no side effects.  I start therapy in Jan. 04  in late Feb of 04 is when things start to go to hell.  I was trying to work, and maintain an elected position at the time.  I became so sick that my work suffered, my family suffered and suffered for the next 36 weeks.  I was close to death many times during the 48 weeks of treatment of interferon and Rebeferon.  I Had to leave my great job beacause I was to sick to work.  My family had to pick up the slack.  We lost all benefits from my work.  T

The good thing after all of this is the virus is not shown up after my 6 month test.   Although I have not been tested since.  Somewere along this I pickup Fibromyalgia, Chronic Fatique and other things.I'm on big doses of morphine and it still doesn't take all the pain away so I'm not sure if pain killers are the way totally.  There must be something else going out there, I to have 5 specialists 2 Drs. and I'm a mess. Three years of being really sick, 48 weeks of Hep C treatment and now this stuff for over a 18 months, but the Drs say I'm lucky that I still here... The Feds say I not disabled enough for ssd, but I can hardly walk on a good day.  My mental status is in question some say bi-polar, some say the interferon fried parts of my brain. I still at home barely functioning at best, don't drive very much and my Longtermcare insurance is threating to leave us dry.  Makes you want to cry.   3years not hep c and a mess

Any thoughts

Barb,

It makes me cry just to know someone is out there.

thanks

 

Connie,

The Dr's say I have Fibromyalgia and Chronic Fatique. I have also been slated of having a lupus like syndrome but nobody can say anymore than that. They did say it is not lupus but my test indicate lupus? Every bone in my body hurts like I was still on interferon... I've been off of it since Dec 05. Stage 3 Fibrosis has been slated to me as a non factor at this point.... that is why I was turn down on my ssd. I retained legal help and we are in our 18 month waiting period for a heaing.

I know I'm not alone, it makes me proud to know this...Most days I don't have the brain power to do this much computer stuff.... Not to complain or make light of things...Some days I don't even know what a computer does or how it functions? Today is a good day, so bring on the rain......


Hugs

Hi marvin, welcome to HW forum. Thankyou for sharing you story with us.My heart goes out to you & your family.With big doses of morphine I'm surprised you can focus on anything.I was misdiagnosed with lupus & was on morphine, demoral, t"3 & sedatives, anti depressants & prednisone for the lupus etc. I had started out with fifbromyalgia. The lupus I had found out I never had it was my live disease that altered the test results to show a positive. What had happened was the prescription drugs Starting with the pain meds for fibro were playing havoc with my liver & this gave me false readings for lupus. What I did have was cirrhosis from the meds. . No-one knew till I went into my first comma but by then it was to late. I was so stoned on the morphine I was in a wheelchair & could no longer frunction period. Eventually I got another Dr. whom helped me get off all the pain meds etc.But the liver dammage can never be undone. I also found later the additional pain was from developing ostreoarthritis from the cirrhosis. I am in 3rd stage cirhosis..The continued use of pain meds also caused worsening encephalopathy for me big time & the lactulose did not work till I got off them & then 6 months after that.Have you considered a pain control clinic? I pray you get on SSD soon. Hang in there & come back as often as posible. you will find a lot of support here.Marvin what are the 5 specialists for & 2 Drs.? Do they all work together & consult with one another? I hope one of them is a good hepatologist. With what treatment has it done to you brain what has done to your liver if anything? My thoughts & prayers are with you . later....

Hi Marvin,

Welcome to the forum! I am my husbands caregiver he is in endstage cirrhosis with possible HepC and we have been going through the very difficult and time consuming task of trying to get listed for a transplant. He has been hospitalized 4 times since the first week in Dec of 05.

I am so sorry you and your family have endure so much suffering! I really don't know much about the Hep C treatments. The good thing is the Hep C virus is not showing up!

My husband was just approved for SSI/SSD, it took us 3 months. I have a friend that just had a SSD hearing it took him 2 years to get it and they said it would be 3 months before they get an answer. He did hire an attorney. Just keep the faith that you have and you will make it!

Hugs and Prayers

Teresa