Sunday, April 4, 2010

Lilian's Story

I should call my story the needler who was needled. My name is Lilian and I am 52. It seems like all my life has been connected to needles one way or another. I have been trained as an electrologist 32 years ago and had my own business working at and operating a busy day spa. During my years in business I also have performed skin care, permanent makeup, piercing, tattooing and even a process called acne scar needling. I remember that we did not wear gloves or used disposables until the early 80's. Sterilization procedures were debated and approved as industry standards around this time. I can honestly say I have been extremely vigilant about cleanliness for my establishment and being an example as I also operated a school over the years.

Starting in the 80's I also became an avid fan of accupuncture and faithfully visited my dentist at least 5-6 times a year for extensive procedures.

5 years ago as part of my license renewal application I had the 3 part hepatitis vaccine - which I think was a coincidental good idea.

2 years ago after a Red Cross blood donation I was notified that I had hep c. My viral count came in at 15 mill. and now has climbed to 20 mill. Fortunately liver test, ultra sound and fibroscan are normal and I am being treated in my home country out of the USA where I have free health care.

I would like to call the attention of all the cosmetic industry and body modification workers to get tested - even if it is through blood donation. Obviously - in my case it would be a miracle not to have the virus with my exposure rate and years around needles.

Right now the hope is the new medicine coming out in 2011, keeping my lifestyle and liver healthy. Also never to be afraid of this virus that is now part of my body. I believe that all experiences in life happen for a reason. Remaining positive is the greatest gift we can give ourselves.

Laurie's Amazing Story of Faith

I was born in September of 1966. I was always feeling unloved except when my mom was around. I knew she loved me; she showed me. My mom is a very loving and caring person. My dad was a truck driver My parents split and divorced when I was 8. My mom raised all three of us by herself; three children and no help. I don't know how she did it but I know the lord helped her through.

I grew up with my older sister Robin, 1959, and a brother Kenny, 1960 and at 15 my sister found out she had Multiple Sclerosis. But my mom believes she may have had it much younger because she fell around more than other kids her age; one time, I will never forget, she got hit by a car.

I always grew up feeling out of place because of being overweight and so in school I read the how to get popular books and they worked. The secret is if someone that doesn't like you or has ever expressed not liking you or try to get to know you then when you see them just say "Hi" you make the first try. That's the secret and I took it one day at a time.

My brother is now married and has a son. Robin has been in a nursing home since 1995 due to her progression of the MS. I on the other hand never knew or expected what was ahead for me. One night changed my life forever.

December, 1988 the Friday night after Christmas because I was excited about going out with my friends to "Tully's" the local Bar & Grill. I put on the beautiful Gold satin blouse along with my black pants my mom gave me for Christmas. I was sitting at a booth window which faced the parking lot of the restaurant and heard noises outside so I looked and there were 2 men beating terribly on another man all alone and others were standing there doing nothing. My friend Toni, (she's a longtime school friend) and I went outside to try to help in some way and as we went out the door I remember telling the door man what we saw.. We went outside and yelled as we walked closer (nothing stops me when someone is in need of help). As we got closer we told the guys to stop and that the police were on their way and 2 went one way the other guy in the opposite direction. Toni and I started to walk away. Not even 5 feet away we heard them running back toward the one guy and BAM!! Down he went on the ground. The police started coming into the parking lot and no one had seen if this guy was ok. So I went towards the guy to ask if he were ok and he said "Please help me" and what you do but help. I reached down and pulled him up between the two cars and without realizing there was ALOT of blood, you couldn't see because it was dark. In the 80's AIDS was just being brought out and so I freaked. My hands were covered in blood. I immediately went to the doorman to let me in to wash my hands and he told me last call no one can enter and I even showed him my hands. Well I took a second to figure what in the world am I going to do so I looked around and there was snow on the ground in small piles so I stuck my hands in the snow in and out in and out until I couldn't really see any blood.

I got home and washed, scrubbed did what ever I had to do. I noticed my hands were stained kind of red. I checked for cuts and there was a small cut on my right thumb that hadn't quite healed yet. I forgot all about it the next day and went day to day about my business.

Then came February 1989, my complete physical....Blood work and lots of it. Then results showed non-A non-B hepatitis, so the testing kept going about once a month to monitor.

* 1990 - First round of treatment* 1993 - September 18, I got married then one week later ended up in the hospital for a severe pelvic infection then two weeks later went back for surgery due to ovarian cysts. While under they found signs of cirrhosis
* 1999 - 2nd round of treatment
* 2001 - Rotator Cuff surgery and tested my liver, and the cirrhosis still the same* 2004 - Blood work is abnormal and now my cirrhosis has changed to stage 2, there was discussion of a liver transplant but we'll wait right now because my numbers aren't where they need to be, also I found out I am Geno type 1-A Chronic Active
* October 2004 - Filed for my Disability per doctor's orders
* November 2005 - Started treatment for 3rd time, very different this time and much sicker than in past. Symptoms were very sick. The medicine ate the lining of my stomach and hurt so bad and was very uncomfortable so the acid reflux had gotten worse also. I had many headaches much worse than the daily to every other day headaches I was used to still bothered me.
* March 2006 - Blood Work showed change in levels of Viral Load went to -50 which indicates no signs of Hepatitis C, BUT don't get excited yet that's why Hepatitis C carries the sign of the dragon, because there is NO CURE and NO VACCINE it hides for a while then attacks again.
* November 2006 - Ended treatments due to doctors orders and showing no signs right now

As of today I have the following:  Please for more information I have linked most of my symptoms.

• Stage 2 Fibrosis
• Enlarged Spleen - due to liver not functioning at 100%
• Thyroid problems - under active
• More fatigue, very very tired!
• Spasms Cramping all over
• Hurt all over in different Ares from side to back to legs
• Joints hurt
• Swelling
• Dry Mouth
• Noise Bleeds
• Trouble Concentrating
• Trouble Remembering
• Itchy skins area's - right wrist area, occasionally under both breasts (sorry)

I am currently fighting for my Disability but my age they say is hindering the process, but my Faith over-rides that theory. The list goes on but I will up date as each day goes.

Please continue to pray for me and my husband Rich for finances, physical, spiritual guidance, encourage us and comfort us with prayers for peace. I know the lord will take care of us but with Rich the ONLY income it is getting more and more harder to keep going. But I am NOT giving up Hope or Courage!

God Bless You, Laurie

Doctor Rudman is going over my lab work because it was my 3 month check up since January.

Well your viral load is up and the virus is back up to 2,200,000. (My heart sank), then he said we need to do another biopsy since my last one was in 1999 when I had rotator cuff surgery and they took a biopsy then. This will show how far the cirrhosis has spread.

After Biopsy I have to stay at least 8 hours to be sure of no complications. The doctors were telling me there is a new medicine out that's a shot per day along with pills again. But, they say I shouldn't get as sick as the last time. ugh.

Please keep me in pray for Finances and Health

Liver Biopsy Day 8:30am checked in short wait then sent back to Same Day Surgery the normal Blood pressure, temperature etc...Go over procedure with OR Nurse 10:40 taken to Radiology and no time to wait then in to a room There were 3 Nurses, the sonogram Tech, one doctor and a doctor in training, and one nurse to keep me calm I am very nervous at this point with all of these people in the room but for Stat procedures you have too in case of complications. The Doctor told me when to breath, hold it and not move. If one move it could slice the liver and I am not going there.

Ok now it's time, he uses the sonogram to locate the liver, then finds his spot (mind you in 1989 my first biopsy wasn't so easy and pain free I had one nurse and one doctor and no sono machine, just imagine, ewwww) He says you will feel a bee sting and then yet another, in he went, then he says Laurie I am sorry but I need to go in again; I didn't get enough, (Did not want to hear that) so in he went and it was over.

Went back to my room now lying only on my right side facing the next 6 hours in that position. (Bleeding from the biopsy can help clot the area so no internal bleeding later.) I got one shot of Morphine and I tried to sleep but it didn't help, 2 hours later my mom and Aunt came back and they were glad to see no complications. My best friend and her mom came back to pray and talk to me before heading back 2 hours away. So after 3 hours another shot of morphine, you will feel a little sleepy, wow I feel it now ready to sleep for years. So off to la la land I went I was discharged at 6:30pm

Now the next week would be the hardest, moving and waiting on results.

Dr Rudman and another doctor were explaining bits and pieces to me but could only grab what I could understand. My Liver is now stage 4 cirrhosis and I NOW have what’s called Fatty Liver Disease (NASH). This now grows concern for my doctors because he explained to me that the two Hepatitis C and Fatty Liver Disease (NASH) are FATAL together.

So now a new Disease to fight against.

My doctors are saying we have to put the Hepatitis C to the side and get to the Fatty Liver right away. Because Cryptogenic cirrhosis is a common cause of liver-related morbidity and mortality in the United States. Nonalcoholic fatty liver disease (NAFLD) is now recognized as the most common cause of cryptogenic cirrhosis. However, the diagnosis of cirrhosis in patients with NAFLD appears to be delayed compared with those with other chronic liver diseases and thus carries a higher mortality rate.

Please keep me in prayer!

Today I got the call from Dr O'Conner about my PET Scan results. hummmmm

Well, now I have swollen lymph nodes located in the chest and the spleen looks suspicious (what does that mean?)  I had to set up another CAT Scan and a visit with a Lung specialist. Not sure why on that one this was all over the phone and not much was said. I was in awe. I April I have my Lung Specialist appointment.
Now Dr O'Conner did tell me where the Lymph node is located in the chest will be easy to get to do a biopsy. By cutting about an inch on my neck then follow down to the chest to get a nice piece he called it.

Wow this is just getting more and more interesting every day.

Sometimes I feel like a basketball going from one doctor to another then sometimes I feel like a car you fix one thing and then they find something else. I am just blank feeling you know. I guess because now it is getting I guess closer to finding what is going on? Not sure it is very puzzling.  Anyway a Lung specialist and not telling me over the phone? I am so lost now. I still need lots of prayers to continue for me and my family.

It has been a very rough few months, just think in 6 months it will be a year when we first started this journey in finding the problem. I sure hope we are getting closer I really do.

I have so many friends keeping me uplifted and others with their prayers I feel them. I even have been waking up in the middle of the night thinking about certain people so I start praying for them not knowing which isn't what it's about it's praying and keeping the faith that matters and all else is the victory and the testimony I give to others.

I will overcome and rise again!!

God bless you and thank you for being a very good friend during such a crazy time in my life.
No matter how bad this comes out I am a child of GOD and he will have a reason. I told my mom if my life was ending no matter what I go through I am one to do what I can to save another or more.