Hepatitis Forums
Hepatitis C Main Forums => Living with Hepatitis C => Topic started by: freedomisearned on October 16, 2014, 10:29:46 pm
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My story is all about denial...
After coming home from a biz trip that had taken me out of the country for over a month I wasn't feeling well. I went to my family physician had a quick physical and took some blood. The doc put me on anti biodics just to play it safe. A couple days later he called and said I had a venereal disease. Imagine my shock I had been married and monogomous for 19 years. I had Hep C. Ah the misinformation we get....~lol
I made an appt with a gas doc who explained blood to blood blah blah. Had some xrays done and we found cirrhosis. I was placed on some meds.
Denial ~ two years later...
Ascites sets in as well as hepatic encephalopathy I was referred to Mayo. After a few appointments and they are no ordinary appts all day freeking appts.
(Anyone who has been knows)
I started the interferon and Pegasus treatment. I became sicker stopped taking it and started feeling somewhat better~ Denial ~ i missed appts and Mayo dropped me.
I would get my meds from my gas doc and get the Ascites drained as out patient at my local hospital when needed. That worked for another year.
Then came the rough stage sleeping for days, memory loss, vomiting, hallucination, I can remember barking at my children trying to communicate with them. Thats just one of the many episodes I had... We finally sent the children away to theirggrandparents. Four years later our relationship is very strained..Stupid Denial...
Then it happens flipping out at work I couldnt remember my name why i was there etc,. 911.... I was taken to Good Sam. A hepotologist team examined me and had a come to Jesus talk with me. I had Geno 3 and a meld of 20.
Getting listed is a long long process and with my denial and kicked out of Mayo I was not that desirable. I had to call my dad (retired IRS) and come clean. He helped through the process of getting me listed.
2 months later still trying to get listed going to meetings and selling myself to the board.
Then came the day my husband found me on the floor comatose he rushes me in. Im yellow my meld is in the 40`s. My liver has failed. Kidneys in failure.
3 days comatose then 1week I was kept in a coma to get me well enough for surgery.
I was dying.... when i came out of my coma i hallucinated for days. I was 80 pounds and looked like some one beat me.
Finally feeling like myself just a little weak i want to go home. I was told I wouldn't be going home. I would die there or get a transplant ~DENIAL
I was listed on the organ donor list within 24 hours I had a donor. I had surgery the next morning. It still didn't feel like I was dying. It became REAL when my mom came with the Pastor and he read me my last rights. My aha moment.
I blue lined twice on the table the first time the surgeons brought me back the second they just waited to see if I would or not.
I was in ICU incubators for a week. My memory speach and basic motor skills gone. I couldnt walk.
5 weeks physical therapy allot of crying and nightmares. At 90 lbs i got to go stay with my dad i needed full time care still. I was still in a wheelchair. Lots of home therapy, a couple relapses, 100 lbs and 2 months later I got to go home with my husband.
Since my transplant I have had stints put in three times, as well as some other minor set backs.
My hep c is back (we knew it would be) my insurance has finally approved Sovaldi and Rib. I have the normal side effects but in reality its nothing compared to what i have been through.
Three weeks my hep c looks great my doc is so happy he hugs me and tells me we are going to make history!
Thats my story ~ if there is anyone i can help or needs to hear my story in more detail, because in reality there was so much more to each incident. How my family reacted to my secrets, being layed off from work, my rehab, my children, etc.. let me know. The Good Lord kept me alive for a reason..
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Welcome to the forum - your fighting spirit and story are inspiring. Thanks for sharing and offering help.
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In my denial I took away my loved ones acceptance of my disease. They never fully understood how sick I was. I thought I was protecting them.
Screw that I didn't want to admit I could be dying. Then before I knew it I was missing days, vomiting and hallucinating. To this day I remember the hullicinations more than the reality.
Anything I can do to help please let me know. I have lost family. I have lost time. I have lost.. Because of my denial.
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I am so sorry to hear all of this has happened. I will keep you in my prayers! I hope you start feeling better soon!
Live, Laugh, and Cantor on