For the past week or so I’ve been writing about Hepatitis C, mostly in clinical terms. Today we begin to tell the human side of the story, the side that shows how devastating this disease can be and how it can bring out the very best in people. It is the story of a Boston couple — each has the disease. One far more seriously than the other.
Peter and Ashley Curran are my friends as a result of Facebook and Organ Transplant Initiative . They are two of the dearest people I know not only because of how much they love each other but also because they are friends to all who are suffering from Hepatitis C, their caregivers and to everyone else in the donation/transplantation community. These are two genuine, kind and loving people who face incredible adversity on a daily basis and never ask for anything.
The story you are about to read was written by Ashley at my request about her beloved Peter. She writes only of Peter’s disease but doesn’t even begin to touch on the many other hardships they have faced nor those they are facing on a daily basis. Ashley and Peter don’t have much, but they have each other and by God in my book that makes them the richest people on earth.
If ever there was a story of love and compassion and of giving yes, giving (Ash and Peter give till it hurts) it is the Curran story. Please, if you pray, say one or two for Peter and Ashley. God gets distracted once in a while with all that’s going on in the world so let’s give him a nudge and remind him that Peter and Ashley could use a little of his grace. It is people like Ashley and Peter who will get left behind as our national safety net gets ragged, torn and frayed.
More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.
Let’s start with a definition.
According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.
Hepatitis C, Peter and Ashley. A Love Story.
Written by Ashley Tenczar Curran
“You are going to need a transplant, your liver function is at about 10 percent”. I heard the words over the phone as my husband Peter and I were having our morning coffee. He had gestured for me to come over to the phone to listen in, and the words will never be extinguished from my mind. I did not know then, in my shock and disbelief, that a shadow had fallen.
Peter and I met in 2000, a year that I was finally leaving my devastating drug addiction behind, and starting over. I had moved into a rooming house in South Boston, where Peter had been a tenant for about 7 years. I wasn’t looking for love, especially in THIS wrong place. An overcrowded, “6 adults sharing the same bathroom” illegal “sober house” as it was advertised had enticed me because it was in good old “Southie”.
As I moved in, and was trying to carry my computer with one hand, doing a disastrous job of it, I heard a voice say “need some help?” I realize how stupid this sounds, but I married Peter that instant. He was 20 years older than me, and not my type at all. Laid back, calm, patient, and not overly talkative. I am the opposite. He helped me plug in my computer, and left. I had been hit by some type of Divine thunderbolt, and I had not felt that feeling in a very long time. We were facing insurmountable odds. He was just getting clean, tired of being “sick and tired”, and I was fresh out of a treatment program.
By all reasoning, we should have spent one week together and never seen each other again.
We should have died when we relapsed one time, several months after we met, to “try it one more time”, as if we had not destroyed out lives enough. All I remember is waking up with a needle in my arm, and seeing Peter on the floor , with a needle in his arm. We talked the next day, and loved each other enough to realize that we would lose each other if we used even one more time. We finally, after some 15 years pursuing recovery, were unselfish enough to lay it down, and never return.
But the past always comes into the present, it is inevitable. I had been diagnosed with Hepatitis C, like most people I know, young and old, who have ever used a needle while doing drugs. It is an epidemic of unimaginable proportions.
My virus was “undetectable” and remains that way to this day, 12+ years later. Peter did not fare so well.
When we first started dating, I was amazed to listen to stories from other addicts, both active and in recovery, telling me that Peter is the kindest and most patient person they have ever met. I say this NOT for the purpose of this story, but my husband has some kind of way about him that instantly puts people at ease. When my best friend Michelle overdosed in the room above ours, we tried to bring her back, and I wanted to kill the man who had given her the dope. Everyone who was there wanted to hang this man. Everyone except Peter. He got the man some soda, gave him a cigarette, and sat him down to ask him what exactly had happened.
I remember the guy saying “Why are you being so nice to me?”
I have tried to model my behavior after my husband’s, being honest almost to a fault, and at the same time I am angry that I am not the one who is sick, that he , the patient and loving one has to be the one to go through the horrors of 22 medications several times a day, 3 years so far on the transplant list, (UNOS), and very little family support (They were attentive and supportive at first, but now that the drama has settled, and they know it could be many more years before Peter gets his Gift of Life, they have gone on with their lives, and do not even invite him to family events anymore)
Peter does not get angry.
This is how I know that God will give him a transplant. This is not wishful thinking, because if you knew Peter, truly knew him, then you would know this also. He has a higher purpose, and God is not done with him yet. He met a nurse, albeit a “disgraced” one, (me), who is 20 years younger than him, and who loved him from the first time she clamped eyes on him. He is my “Brad Pitt”, even in his weakened state. I find I love him more , the sicker he gets. The fight he puts up, the appointments, 4 in the past 2 weeks, and the humility he shows, the polite character he prides himself on, causing doctors and nurses to say over and over again “I wish I had 100 of HIM!”
Hepatitis C is overlooked. That is a FACT. So many young people are being diagnosed right as I type this, and the organ transplant lists, particularly the liver, are getting longer and longer. People are dying from a disease that is completely preventable, and that has a vaccination available! Soon we will find that our young people are gravely ill, (we can see it now), and that scares me. Peter said if he had a choice, he would give his liver transplant to a young person, as he has lived his life.
A lot of people think that “junkies” don’t deserve transplants, because “they did it to themselves!”
Well, to that I say “so cancer patients who chain smoked for years don’t deserve chemo and radiation, and costly experimental procedures because THEY “did it” to themselves? So many diseases ARE the result of something “we have done wrong”.
The real shame is the stigma that society attaches to drug addicts. One person told me “taking pills is ONE thing, but putting HEROIN in your ARM with an IV? That is ridiculous!” More people die from a combination of narcotic pills and another type of pill, typically a “benzo” like Valium than do from a heroin overdose (I.E. Oxycontin).
I don’t know what the future holds for my husband, or, for that matter, for me. But every day I remind him that God loves him, and I love him. We tell each other every day. Though we did that before he got sick, it resonates even louder now, because I could, in reality, be counting down the days that I get to hear his voice, and see his chest rise and fall, knowing he IS breathing, as I do so often.
Please consider being an organ donor. There are so many people suffering like this, and putting their best foot forward to patiently wait for their turn. My husband, I believe, is the most patient “patient” that Beth Israel Hospital has ever had.
After three years on the waiting list, Peter and Ashley are considering looking for a living liver donor. If you have an interest in helping this couple you may contact them directly on Facebook or leave a message here and I’ll make sure then get it. Please everyone, if you pray,say one for Peter and Ashley.
Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.
You may comment in the space provided or email your thoughts to me at email@example.com. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.
Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.
If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to firstname.lastname@example.org and usually you will get a copy the same day.
Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.