We need to get over the stigma....Inspirational Story from Scotland

I don't really know where to start with my story as so many people have went through so much pain and hardship because of having this horrible virus. I feel I have been very fortunate not to have so far. Apart from a few episodes of real joint pains that come and go.

I am a 53 year old mother of three grown up children and have also brought up two step children. I have seven grandchildren and another one due in August. One of my daughters has had problems with alcohol and drugs and has for a number of years; as a mum it breaks your heart to see someone you love wasting their life. She is on the mend now, however, I have two of her three children living with me as both their dads died through drugs within months of each other and my daughter just couldn't cope. She lost herself more in drink and drugs. I have been caring for them for over a year; one is 3 yrs old and the other is 13 years old; it can be difficult at times as I also work full time with young adults with learning difficulties but I love them dearly and we manage.
Through all the troubles and hard times we have been through as a family I have always said "at least we have our health".

In early February this year my youngest daughter phoned me to say that her Dad had been in touch to say he had Hep C and I should be tested. We haven't been together for over 16 years and don't keep in touch only through our daughter. I spoke to my husband about getting myself tested and we decided I should as I would just worry. It would put my mind at rest. Anyway I was really healthy so I wasn't really worried about the results. The nurse I spoke to told me there was no cure but I could be tested which I was.

Three weeks later on the Friday night she called and told me the tests were positive, and I would probably get an appointment to go to the local hospital for a day bed. I made an appointment to see my Doctor. I just couldn't believe it. I was in utter shock the whole weekend.

I have a very dear friend that I have known since school who had been through treatment twice 15 years ago for Hep C and eventually cleared. She was also very active in fighting for the rights of people with this virus as she suffered in the eighties. She won’t mind me naming her. She is called Feyona and she has a wealth of information about this disease, so I knew this nurse was wrong.

I phoned her to tell her my news she was devastated; if it had not been for Feyona my weekend would have been unbearable. I was so frightened and although I had my husband he didn't understand, I felt so alone.

Feyona talked me through what would happen next and even emailed me a letter including questions etc. that I was to send to my local Doctor prior to my appointment on Monday; so that he would know what I wanted to ask him. This she said would save time. She told me to ask for copies of everything. My Doctor told me he knew very little about Hep C but was sending away more bloods to find out if the virus was active. Another time of waiting then he called to say it was and I had a viral load of 34,951, however, my liver function tests were not too bad and he didn't know the geno type yet.

I was advised by my friend not to use the local hospital as the one in Dundee had specialists in this field so I asked to be sent there. A couple of weeks later I attended the new hospital. They did all the tests again and also did a fibro scan the scan showed moderate fibrosis. I was to attend again to have an ultra sound in a couple of week’s time. The day before I was due at the hospital I received a phone call to say they had my blood results back and they showed I had been exposed to the virus but there was no active virus. They said they thought my body had cleared it by itself.

As you can imagine I was over the moon. I still had to attend for the ultra scan because of the fibrosis and they had found high ferritin/Iron which they thought may be hemochromatosis so wanted to look into it; also do my bloods again just to confirm I had no active virus.

I then received a call at work to say they had made a mistake I did have a viral load of 52,000. I just fell to bits. It was like a double whammy; getting my head around it the first time; coming to terms with it and then the relief of not having it, then I did all over again.

I had to come home from work and ended up going to the doctors crying my eyes out.

It just felt so unfair.
I have my original appointment to see the professor and get started on treatment on July 23rd so that's as far as my story goes at the moment.

Only my youngest daughter knows I have this virus I haven't found the strength to tell the rest of my family yet especially not my daughter with the addiction problems. I have told my granddaughter who is 13 and lives with me. She is amazing and keeps me positive by saying Gran this isn't your fault and we can beat this. She has researched it on the Internet and knows all about it don't you just love them eh!
I do realize I am very fortunate to have the National Health Service here as it must be so difficult when you have the added stress of money when you are going through what is a really stressful situation to begin with. My heart breaks for some of the people who are struggling to pay to get treatment.

I feel there is not enough known or addressed about this illness. My friend has fought for 20 years here in Britain to help people deal with all sorts of issues; even she still feels no-one is listening, lets hope this changes soon.

We need to get over the stigma and find the strength to stand up and be counted and listened too.

Keep up the good work Betty Love from Bonny Scotland

Ann xxx

It’s my life ...Denise

Hi - I am recently diagnosed. On my 3rd week of treatment; which as of today I have to stop. I don’t know exactly how I contracted Hep C; however, I do believe it was thru 1 of 2 blood transfusions I had back in 1976 and 1984. I have never used IV drugs; been married to same man for 20 yrs; worked in health care field for almost 30 years but never dealt with needles. I had no symptoms. I did have problems with my digestive tract so I joined a research study where they did numerous blood tests which came up possible for Hep C. I had to continue from there and had been seeing a dr who just didn’t communicate. I decided today I cannot take the treatment any longer. The side effects are so bad I cannot do my normal daily duties. I take care of my disabled mom who is 78 in a wheelchair; a 9 yr old grandson and of course hubby. They have been neglected these past few weeks that I’ve been on treatment so I quit. I don’t know much about my disease. All I know is chronic and geno type1 but I do intend to get more info from dr whether he likes it or not. It’s my life and I need to know more facts.


Thanks for listening

Hope, Pain, Sorrow.....Poem By Margie (A true Gift)

Here's one for you Betty...this is what the silly insomniac heppers do when they can't sleep
please feel free to use it in your blog if it helps.
hugs margi

I went to the doctor, my tummy is ill
He said I was fine and gave me a pill
I went to the clinic cuz my side hurt bad
The nurse was busy and just got mad
There s nothing wrong I heard her say
Just another patient and another day
Doctor, Doctor cant you see
its not in my head
Ive got Hep C

She went to the doctor a mother of three
Her neck was swollen her skin itchy
Cancer you have and these drugs will do
That Non A Non b thing is nothing to you
Cancer didn't kill her, the drugs they used did
They said good bye, each one of the kids
Doctor, doctor cant you see
Its not in her glands
Shes got Hep C
I went to the doctors my platelets were low
You're fine, have surgery, we really don't know
But this pain in my muscles and pain in my bone?
The time spent trying to get well, I want to groan
You're young, you're healthy you will heal real quick
I'm actually feeling sick sick sick
Doctor, Doctor can't you see
Its not in my head
I've got Hep C

He went to the doctor his skin was yellow
You drink too much you silly fellow
He gave him a lecture and a shot of B-12
His history as a vet, he forgot to delve
The aches and the pains he brought home from the war
He was too proud to complain he had survived much more
Doctor, Doctor cant you see
Its not in his bottle
Hes got Hep C

She went to the doctor her body ached and groaned
Her stomach was bloated, her head just moaned
I'm sorry Miss I am really not sure
But your card expired and your uninsured
We will send you to a clinic 100 miles away
You will wait several years for a doctor they say
Doctor, Doctor can you please help me
I have no job or money Hep C

He went to the doctor the best in town
He treated three times but it wouldn't go down
Dying might be a better idea
Than injecting more interferon into here
The doctor he told him, no more for you
Writing out your will is all that's left to do
Doctor, Doctor cant you see
My whole body is broken
And I've got Hep C

We are children, parents, husbands , wives and friends
It doesn't matter how it got us, it just did in the end
Some want to judge, some want to run
But curing and healing can only be done
With compassion and research and lots of trials
To cure this thing is a road of many miles
Doctors, lawyers, politicians, you want to poke
We have hep C and we need some hope
You argue, you fight, spend money on might
Your people are dying at home in a fright
We need your help, your compassion and concern
We need the misinformed to try and to learn
We don't want your pity, we want to feel well
We have the story that is each of our lives
to live
and to tell

Peace to all

Being Genotype 2.......Hilltopview

Hi there. I am recently diagnosed Chronic Hep C. Low viral load 12,000 and genotype 2. I haven't been to see gastro yet but scheduled for May.

Since finding out about this virus, I have read a lot and made some radical changes. I've changed my diet, stopped drinking alcohol, caffeine, etc introduced meditation, yoga, EFT, and a range of alternative therapies.

Initially, I totally freaked out, I was gob smacked by the diagnosis. I was sitting in the small office with the doctor while she went on and on about the results of enzyme testing and all that. When she first mentioned Hep C, all I could think about was vitamin C lol! - while the ramifications were starting to swirl around in my head. I left her office in total shock. That was around the second week of March.

I have spent a lot of time reading, researching and adopting things that I feel will have a positive impact on my health. Not all of it has been easy. I have two young boys which are making all these decisions stick, though. Mind you, it's only been about a month so far. But, so far so good.

I'm now feeling probably the best I've felt in years. No headaches, more energy, less foggy brain.....

Today I got the news about the Genotype 2. I was surprised at this result as Genotype 1 is more prevalent in Australia. (Read that info from this website; really appreciate it as a good source).

My husband has been great, really supportive but I'm sure it's been really hard for him. He's seen how well I've been lately and I think that's a comfort.

Anyway, blah, blah, blah....don't know what the gastro doctor will recommend next, but I'll just take each day as it comes. The gastro doctors have all been at an annual International conference in Venice. The one I am meant to be seeing has been stuck over there because of the volcanoes and flights being cancelled. Poor thing; I wouldn't mind getting stuck in Venice.

It's been great to find a site that offers support for Hep C sufferers and a place to share. It's not something I want to update my facebook status with - that's for sure! lol.

Well look forward to meeting you and sharing the journey.

Hilltopview

LIVING WITH HEPATITIS....by Curtis

I was diagnosed with Hepatitis C in June of 2006. It has been a real challenge everyday. Because of the disease I have cirrhosis. The doctor found that I had cirrhosis after a biopsy of my liver. He then said that there was nothing that could be done to help me and that usually in cases like mine there is a fifty percent of a five year survival rate. I sought help at an upstate university that is well known for their care in liver disease. I had to go through another biopsy and the findings were the same. I went through the 48 weeks of treatment plus an additional 28 as a maintenance trial to slow the progression of the cirrhosis. I had to stop because I could not deal with it any longer. My tough guy ego was gone. I became so depressed and had lost over 60 pounds. Then I sought counseling to get through the tough time. I continued working through all the treatment, but eventually had to go on medical leave. I could not think clearly and the fatigue was unbearable. Now I have thyroid problems; I am now diabetic; severe arthritis in the spine; cirrhosis and now on top of all this I lost my medical insurance. I can't afford the insulin and I have been not going to the doctors on a regular basis. Everyday I wonder what is next to knock me down and when is it going to happen. I have no idea at all of how I contracted Hep C; no drugs, tattoos etc.. But one thing comes to mind is that when I was in the service, back in the seventies, I was given shots in the arm via air gun injection, which might be why the doctors ask when I was in the service. There are a lot of things that I might have left out of my story but I have to end it now. Too tired to continue typing. It has been hell for the last 4 years to best sum it up and kind of not wanting to feel like this to much longer. I just wish the treatment would have worked for me.

Thank You

Curtis Hadlick

Be grateful for every day.....ADRIENNE’S JOURNEY

My name is Adrienne and I would like to share with you my transplant experience.
I wish to dedicate this chapter to my husband Hank for his unconditional love, devotion and support while I was going through my medical ordeal. To my family for always being there and never judging me. My best friend Linda who listens to me through my many ups and downs. My transplant surgeon Dr. B for his steady hand and kindness. Dr. G who saved my life. Tina, my transplant coordinator without whose guiding hand I would have been lost. To the doctors and nurses I have met since coming to UCLA. Last, but not least Elizabeth for without her none of this would be possible for us to share with you.
After a hernia operation in 1994 I was diagnosed with hepatitis C. In 1995 at the age of forty five I met my husband and life mate. We went back to his house to talk and have coffee. On his coffee table I noticed a book, the cover stated Hepatitis C. I asked him if he had hep-C. Hank was the first person I had ever told about having hepatitis C.

Shortly afterwards we were married. Soon after this I began feeling bad, so my husband took me to the doctor. There were a battery of tests and they discovered I had cirrhosis of the liver.

My husband had used interferon and it helped him, he is still undetected to this day. I did the treatment for a year with no side effects, but my liver was in the end stage by this time and I had been in and out of hospital many times. Dr. T. referred me to UCLA where I meet Dr. G. the man who would save my life. He told me my liver was so far gone, that the only choice I had at this point was to get me a new liver.
Well, you face many demons when you know you are dying, so I made my peace with God and left it in his hands. I was in hospital several times after I had been placed on the waiting list. I went through all the evaluation tests during one of my stays; this was before the MELD scoring system was in effect. I didn’t think I would make it very long. It was a real downhill slide as I didn’t think I would get a liver. I was no one special, why should they give me a liver and not someone else? That is how I felt! Then Hank said something that blew me away, it was simple. He said “Adrienne, God didn’t bring you this far to drop you on your fanny now!” It was the truth!
On February 10, 1998 around 10.00 pm the call came, my husband answered the phone it was Barbara N my pre transplant coordinator. When we got the call needless to say so much goes through your mind at a time like this. Do I have to have it? Will I live to see another day? The words of my husband came to me again at that point I put myself into God’s hands.

We got to the hospital around 11:45pm and were brought right up to a room a doctor came in to tell me they were running tests on the donor’s liver which was being flown in from Arizona. After more test were run blood work, EKG, etc; all was well with the liver except it had hepatitis B antibodies, but having hepatitis C already meant it did not play a big role in the decision to go ahead. At this point I only remember bits and pieces of what happened. But, I do remember the operating room with all the doctors and nurses. I remember joking a lot with them that is something I do when I am nervous. Then, off I went to sleep…

I was in the ICU hearing muffled sounds in the background and trying like all heck to open my eyes, but I couldn’t no matter how hard I tried. I remembered thinking they will never know I’m alive if I can’t get my eyes open. Thinking about it now is funny, but it seemed at that time to be a matter of life and death to me. I must have been struggling a bit because there were restraints at my hands then I got my eyes open and saw my husband for the first time. “I am alive”! “I am alive”! I kept repeating. The thing that had scared me the most about the whole transplant was not rejection or how the operation went, it was just not dying on the operating table and not being able to say goodbye to my husband family and friends.

The first day on the liver transplant floor is a day I do not really remember. The second day I was ready to try and get up. I wanted to get my life back to normal as soon as possible. Yes, it hurt a lot but by the fourth day I was walking down the hall to the laundry area getting my own bedding and making my own bed. I liked my bedding a certain way and didn’t want to give the nurses extra work they already had enough to do. The nurses on the floor were fantastic and their care was terrific.

Now I was over the three day period and from that day forward I never gave a thought in my heart that my new liver would reject, it felt right at home. Everything started to confuse me I had never used a computer, so I had no one to talk to who had been through a transplant. If my husband hadn’t been there when the medications were explained to me I would have been lost. It is so important to have family and friends when you are going through a transplant.
Well coming home was a little harder for me because I had to spend my days alone Hank was working as hard as always. There was a great deal of bandaging and cleaning of the tube area and getting used to all the medications. Everything went wonderfully; the clinic and the coordinators were just the most supportive people you can imagine.
Since my liver transplant in 1998 I have been doing very well; the energy level was a little less than before but I am so grateful for every day. In 1998 treatment was not the norm for post liver transplant patients who have hepatitis C.

In April of 2002 I had my first rejection episode after a year of interferon treatment, which had worked for me. I had been undetected since May of 2002. While I was in hospital I was told a second transplant would be needed. I was shocked to hear this. So, all my evaluations test were done again; my rejection was now controlled, but I have been in chronic rejection since that time. I was relisted for a second transplant in October, 2002 and am still waiting, and waiting and waiting…just like a little energizer bunny.

I have my good days and bad days but all in all it is not so bad the second time knowing what to expect and also having the knowledge now. The first transplant I didn’t even own a computer so I was alone except for my family. I am so grateful to so many through the years and especially now being able to help so many in need that have just received a transplant or are on waiting lists. Giving back is the most important part of my life. Besides my family this is what I do and who I am. The things I have learned is live life to the fullest…be grateful for every day, helping others enriches your life and being blessed with a great family and friends.

Live on my friends and thank you John with all my heart for the “Gift of Life” you have given to me

LACK OF AWARENESS STOPS HEPATITIS C TESTING:

Hepatitis C can be detected with a simple test it is a potentially life-threatening viral disease of the liver transmitted through blood and blood products. It is the most common blood borne disease in the US. Over time chronic infection can lead to cirrhosis, liver failure or liver cancer.

"This blood may contain hepatitis or other viruses" and it did............

My name is Candice and I'm 59 yrs old. I worked as a pediatric RN until I was 45, when I started having pain all over. I went from Dr to Dr and ended up with a Rheumatologist who diagnosed me with fibromyalgia. I was put on pain meds and had my blood tested every 3 months; went on for years. At one point I could barely walk from the bedroom to the couch without becoming out of breath. At age 56 I decided to start riding lessons and bought a horse to get some exercise. I started feeling better physically, but still couldn't work. At 58 I decided to get a facelift, hoping it would make me feel younger. The surgeon did several blood tests prior to the surgery, including HIV, Hepatitis A, B and C. I was shocked when he called and told me I had Hep C. I had 2 pints of blood transfused when I had a c-section in 1978, and I still remembered the warning on the bags-"This blood may contain hepatitis or other viruses".

I had told every Dr I went to about it and no one ever tested me! I asked why after the diagnose and was told that my liver enzymes were normal. How could this happen to me? I never did IV drugs (which is what you're taught is the cause of Hep C). Since the diagnose, I have done a lot of research and have decided not to treat with the current treatment, which is 40% effective at best for my type 1a. I don't think I could make it through the tx with the pain and depression I have. So I am waiting for a hopefully less toxic and more effective tx. I was also concerned with the lasting effects of the toxic cocktail. Meanwhile I am not drinking, eating healthier and taking herbs and supplements. So far my liver is in pretty good shape, with grade1, stage 0-1. My husband of 15 yrs tested negative. So life goes on. My Dr says I will probably die form something else. I am in constant pain, but manage to push through it and live a decent life. My positive attitude and spirituality help me through.