I’m going to blindly type these words in an attempt to dry my tears. The Hepatitis C Community mourns the loss of Randy Madera, who was a much loved patient advocate. So many long time Hep C advocates from coast to coast knew Randy personally. Each of them could add a different piece in the timeline of her work with fellow HCV patients. Since I learned of her passing yesterday through Robin Lord Smith who is with National Viral Hepatitis Roundtable (NVHR), I’ve been unable to rid myself of the tears, the lump in my throat, and mostly the ache in my heart leading me to write her story as I knew it.
She Was Always There for Everyone
What is amazing is how many knew her personally through social media. The comments are all so similar about what a gentle and loving voice she was and, “She was always there for me” kind of summarizes all of our hearts .
These things are true of Randy: she consistently reached out and responded individually. No matter what she was going through, she remembered holidays, special occasions, and reacted to requests for help and prayer. Many of us are reaching out to each other via fb and text. Our tight knit group are seeking comfort with one another as we try to find a way to better understand how to process our grief.
Her own physical health brought suffering, so she understood and empathized. She was unable to continue working full time in the early 90s. Going from doctor to doctor, she had many diagnosis’ typed into her medical records, such as Lyme disease, Arthritis, and tachycardia. Even with a label for some of her symptoms, the medical profession couldn’t offer her much hope. Like most of us, she relied on a combination of Western Medicine and holistic practices. Sadly, many of have lived with symptoms, but are misdiagnosed, as Randy was.
Hepatitis C Diagnosis and Advocacy
When she was tested for Hepatitis C, the positive result was shocking. Her viral load was off the charts, and there was no cure at that time. Her liver continued to suffer, as did her health, but she was determined to prevent others from having to endure Hep C without diagnosis and treatment. She found her way to many advocacy groups and worked with early pioneers such as Alan Franciscus, Lucinda Porter, Ronni Marks, Robyn Lord Smith, Sue Simon, Orlando Chavez and many others. Her gentle ways endeared her to many. She became part of Hepatitis C Association, and was soon helping others as a Help4Hep Counselor. She also worked with groups such as NVHR, and supported NSTAD.
We first met through fb messenger where we chatted privately about all we had in common, such as yoga, meditation, education and working with people with special needs. By the time we connected, she was living in Florida and we had great conversations over our love of sunshine, cats, and the beach.
Cured of Hepatitis C
In 2014 she began treatment that cured her of Hep C. Then, in 2015, she joined the ranks of Health Union, and I had the honor of working with her through Hepatitisc.net.
hepatitisc.net was a start up health community and Randy quickly became a much loved moderator in the forums and chats. In her bio on the site, Randy shared, “I’m an advocate for HepatitisC.net because no one should die from it. There is a cure, but far too many don’t even know they have it. I’m cured and blessed to have several platforms to lead people to care and treatment.”
She later moved to Pennsylvania to be closer to her daughter and grandkids, whom she adored. Her daughter was finishing medical school, and Randy was so proud, and happy to be part of their daily lives. Spending time with them was better than any medicine that was offered to her. Family was everything to Randy.
Hepatitis C Family
Thinking about it broadly, anyone who came into contact with Randy became an automatic family member in her heart. She was a like a sister who always took your side. If you trusted her with a confidence regarding your health status, she never told anyone else. She helped connect everyone with the treatment they needed.
I quickly learned that Randy was a smart cookie and was not afraid to dive into medical journals to try and answer a question for people with Hepatitis C and its many comorbidities. Even then, she wisely encouraged everyone to contact their medical provider. She called me many times with a query about how to help an individual get treatment, or where a local agency was located. She was tireless in her work.
She signed her responses in the forum, “Hugs, Randy”, and. it really felt like a hug because her words were always a sweet caress. Her voice was gentle, honest, easy to understand, encouraging, and full hearted.
During the AASLD Liver Meeting, she was online for every meeting, dedicated to contributing her passion and wisdom. She traveled to a few meetings when her health allowed and I got to meet her in Philadelphia for HU Connexion meetings on a couple of occasions for fun filled weekends.
The Hepatitis C Community Mourns the Loss of Randy Madera
Several years ago, she rented a home with a mold problem, and her health took an even harder hit than before. Although she moved to her current apartment and was comfortable, pain was part of her everyday life. She got some relief with chiropractors and a combination of medication and homeopathy, but her body was tired. Randy continued to encourage her friends right up until the day she took her last breath. I would like to believe that she fell asleep peacefully and awoke in heaven. We know for certain that Randy is at rest. She has no more sorrow or pain. All fear and suffering are gone.
Fly high sweet angel, you are missed already. May all those who ever felt the love from the touch of your words or your warm embrace feel comforted.
In Randy’s honor, let’s each look for opportunities to fill our own space with kindness, patience, gentle words, listening ears, and unconditional love. Let’s tell others more often how much we appreciate them. Til we meet again. Xo Karen
Please forgive spelling and rambling. If you loved Randy, you also know what a hard and sad day this is. xoxoxo
9 thoughts on “The Hepatitis C Community Mourns the Loss of Randy Madera”
If I left out a name of anyone, please forgive. If you knew Randy well, she has done advocacy work for so long that it would take all day to list them. It’s also clear that patients she had private friendships with were so valuable to her too. The Hep C community just lost a treasure.
Karen Hoyt recently posted…The Hepatitis C Community Mourns the Loss of Randy Madera
Thanx for remembering Randy so beautifully!
Hello Dear Friend, This is so painful for us who have worked with Randy for many years. I appreciate your comments and you coming by to pay tribute. How are you doing? I hope you’re strong and well.
Never forget the good ole days and hope to see you again really soon. A lot of new programming coming up for Hep C in the future and hopefully this year.
Much Love,
Karen
Thank you for posting this Karen. It was a beautiful and loving tribute for a wonderful person and fellow HCV advocate. She will definitely be missed and I think you covered most everything about her and her personal health battles as well. She was truly an HCV warrior for herself and definitely for others! RIP Sweet Randy
Peace and Hugs
PeachStatePam
Oh Pam,
You’re so welcome. You and Randy are so very much alike in your kindness and generosity. What a warrior she was. It’s really hard to believe for me. You too? BTW, I saw so many of our friends in Chicago recently. I should write a blog about that. Chris and Ian and a bunch of the gang from the NVHR meetings. I wish we could all reunite. Many many are still working on this in harm reduction and it seems to be helping.
More people need to start treatment or there will be another epidemic like back in our day. A lot of people who work in the Appalachian area are in need. People who inject drugs are often not aware that they have Hep C and are not getting treatment.
What are you up to these days? I would love for you to write a blog about your experience. You’ve done so much in your lifetime too. I’m THANKFUL that you are still with us.
Peace and Hugs and we’ll include Randy in that hug,
xoxo Karen
It’s sad her light has been extinguished from mother earth and hope she wakes up in the doors of heaven.
Viral hepatitis infection continue to be public health threat and claiming many lives.
Randy you curved the arc of history about hepatitis as an advocate,it’s sad I didn’t meet you but the writing is on the wall for raising voices of the voiceless.
Till we meet again
I agree dear friend that she is indeed walking up on streets of gold even today. I’m concerned about this epidemic. With a cure being ready here, it is easy.
Do you have access to treatment for hepatitis for those near you? End stage liver disease is no joke. I am worried about people have increased brain fog and forgetfulness. Then they do not realize how important it is to treat. They get tired and lay down and the liver is so sick. It happened to me. In USA we have treatment, but many do not get tested. Sometimes they are afraid of the treatment or forget to take their pills.
How can I help you? Is there a chance you will come to the states? Maybe for The Liver Meeting? It would be an honor. I hope you are well connected with the people who can help you.
Your heart is a good one and thank you for serving the powerless ones.
xoxoxo Karen
Randy was a great contributor in our facebook Hep C group “Hep C Treatment Cure and Community”. She was always around with helpful insights and encouragement for people.
Very sorry to read of her passing.
Greg,
That fb group continues to be a source of information for many. Thank you for listening and providing support for so many. Randy was so faithful to respond whenever she could. I hate that she is gone, and we must all continue to the work of spreading good news.
Her own experience with Hep C gave her a lot of knowledge. She also worked phone lines and got people connected to treatment. She was determined to help anyone who called.
Thank you for stopping by. I let the site go when I went back to work. Now I want to revive it a little. There is so much to say about liver disease and the cost of Hep C. It is a killer for sure. Would you like to write a little blurb about your facebook site to invite friends in? Many are still searching for help to cure from Hep C.
Sending you love and peace dear friend. Thanks again for honoring Randy.
xoxo Karen
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