Several months ago I went down to my local blood bank to donate platelets. I was trying to bring attention for the need to be tested to donate bone marrow, so that children like Taten Court could get the marrow they need to survive cancer.
My attention was brought to something else entirely.
I got a letter from the blood bank that was marked “Confidential to Blood Donor.”
“Hmm,” I thought to myself. “That can’t be good.”
It wasn’t.
The letter informed me that my blood tested positive for Hepatitis C antibodies, though negative for the virus itself. It further explained that I could have “been exposed to the Hepatitis C virus but may have cleared the virus” OR I “may have a false positive antibody result.”
“Wait a doggone minute!” I thought. “This has to be wrong! Hepatitis C is a disease for people who are drug users or are sexually promiscuous. This has to be a false positive!”
Wrong on two counts, Shelly.
First of all, I’m in a group at high risk for Hepatitis C (for two reasons).
- I had a blood tranfusion in 1981, before blood banks began testing for AIDS and Hepatitis C.
- A few years later, I cleaned up a very messy suicide (without gloves, of course) when our neighbor across the street blew his mind out. I practically wallowed in blood and brains. The man was an alcoholic and could have been a drug user for all I know.
And, after a couple of months of waiting to get an appointment with the proper doctor, I’ve discovered that I do, indeed, have antibodies for Hepatitis C.
“How in the world could I have had something as horrible as Hepatitis C and not known it?”
It’s symptoms are like the flu, and it’s easily overlooked. Dr. C. Everett Koop said on his website dedicated to hepatitis,
“We stand at the precipice of a grave threat to our public health…It affects people from all walks of life, in every state, in every country. And, unless we do something about it soon, it will kill more people than AIDS.”
“But, I only have the antibodies, so I’m in the clear aren’t I?”
Unfortunately, no.
According to the blood bank, and my doctor, “a majority of individuals (75-85%) exposed to Hepatitis C virus goes on to develop chronic infection that may eventually lead to liver disease.” That includes cirrhosis and liver cancer.
I’ve been waiting for many weeks to finally get the outcome of all these tests. I could smell my fear, and I’m sure you had to smell it as well. The waiting and not knowing has been so stressful that it has been eating me from the inside out.
I haven’t been visiting blogs, I haven’t been answering comments or e-mails. I just stay away from the computer, because when I sit down the first thing I do is Google “Hepatitis C.” It just scares me sillier.
It may take me awhile to get back in the groove. I’m trying to digest this right now, and still have to make an appointment with a gastroenterologist.
Tonight, I’m telling myself how lucky I am.
Yes, I am.
- I could have gotten AIDS from the transfusion or the blood exposure, BUT, I DIDN’T.
- If I hadn’t given platelets, I might not have found out about the disease until there was extreme liver damage. BUT, I FOUND OUT. And, while I was at it, I discovered that my cholesterol is through the roof and my thyroid is out of whack. Now, I’m on meds, so maybe I’ll feel better soon.
- As yet, I have no liver damage.
- Though there is no cure for Hepatitis C, and it can come back at any time, RIGHT NOW THE DISEASE IS NOT ACTIVE.
“I’m lucky. I’m lucky. I’m lucky.”
Maybe, if I say it enough times, I’ll believe it.
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Good grief Shelley!! But you are doing all the right things so hang in there!!!
I’m hanging, dear. Yep, I’m doing that.
I know how heavily this has been weighing on you and wish you peace and the ability to keep focused on the positives as you adjust and try to figure out what this all means.
You know where I am if you need me.
Love,
Robin
Robins last blog post..TT – 13 Things I’m Taking On Our Lag B’Omer Campout
Yes, I know where you are, and you are so far away, and I need a hug!
Good lord Shelly. That must have come as a horrible shock for you.
You’re strong though. You’ll be just fine. And you are lucky you’re right. You’re lucky because you found out early, and because you the kind of attitude that can deal with it.
Hang in there.
I’m faking the attitude…but I’ll try to fake it until I make it. Thanks for the encouragement.
Dios escribe derecho con renglones torcidos. Si Ud. no hubiese ido a esa donación no habría sabido lo de la hepatitis. Su deseo de ayudar al prójimo la ha alertado sobre su dolencia. Es Ud. una persona de suerte, tal como dice.
Cuídese y luche, aunque esto último no hace falta que se lo diga, he conocido muy pocas personas con ese afán de lucha y ayuda a su prójimo. Dios la bendiga. Un saludo de su amiga, Lola
Sorry, because I wrote in my own language, but it is very difficult for me to express my feelings in English. I know that now you haven´t enough time for reading all the comments nor translate them, but be sure I am telling you something good.
lolas last blog post..Quien tiene un amig@ tiene un tesoro.
Sweet friend, thanks for your kind words. Babel fish garbles it, but the gist of it came through. I have “time” for answering…I just don’t have the heart….
Hugs to you.
I am sorry to hear of your medical issues. The only person I “know” with the same issue is Naomi Judd. She, apparently, was well treated and appears to be ‘cured’ of the virus. You might want to add her to your search.
You are lucky. Keep the positive going. Attitude is so important to our health.
She’s doing well, with the help of the best doctors around. Unfortunately, there is no “cure.” I’m just going to hope, since I don’t usually “run with the pack,” that I’ll be part of the 15-25% who don’t develop problems!
Thanks for the cheerleading, though. I can use it.
It’s been a scary time for you, but knowledge is the beginning of wisdom. You have found out a lot of necessary information and you can now take part in your own wellbeing. At least it is a start. Keep us posted and as always, good positive thoughts in your direction.
Jamies last blog post..Don’t Just Sit There
Good Lord, Shelly! As always, my thoughts are with you. I hope you know that!
I’m no doctor, but based on what you’ve written, my gut feeling tells me that you are indeed one of the lucky ones. The most likely course of transmission was that blood transfusion and that was 27 years ago. I know Hep C can take years to cause its damage but I was under the impression that normally the damage starts to occur between 10 and 30 years from exposure.
You are almost at 30 years with still no signs of liver damage!
Keep thinking positive! I know this is frightening, but we’re all here for you and I believe you are one of the lucky ones. I really do!
Love you and a big old hug!
Jessica
Jessica The Rock Chicks last blog post..Black And White In A Grey World
I’m hoping I am one of the lucky ones. But, the transfusion is just the “likely” cause. It could have been ANYTHING, and it could have been more recent. Still, I’m trying to stay positive. I’m not sick NOW. That’s what counts. But, I hate going to the doctor (wine).
Love you back.
My God! What a terrible diagnosis, but what bit of luck it was caught so early. I’m so sorry. I can’t imagine. Good luck to you, hon!
jens last blog post..A BOOK? And a review…
It’s gonna be OK. I’m taking it one day at a time. Heck, I wouldn’t even have known I had it if I hadn’t tried to give platelets. Thanks for the luck. I want all I can get!
Hey girl, I’ve been thinking about you ever since our phone call! I know it feels like a punch in the gut, but looking on the bright side, and there is a bright side to this, you are one of the lucky ones! You are going to be fine, I believe it, and so shall you, once the shock wears off. Sending you positive vibes from my corner of TX to yours! Hugs!
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I believe it, too. The shock is pretty bad, but the waiting was worse. At least I know what it is now. When are we gonna meet?
Hugs to you, too.
You have not been out of my thoughts. You can do this, you shouldn’t have to, but you can do it. In fact, it appears you are already succeeding.
That won’t stop me from sending you hugs and energy and positive thoughts – among other things – just as back up. Leon sent his, too. (And you did good finding the good – but you don’t have to all the time, you can be human, you know.)
Marcias last blog post..Positive X
I think about you too, Marcia. You’ve helped me look for the positive (that “only the good” business is all your doing). I know I’m human, and I rant and rave and whine here. That’s not something I will subject y’all to. That’s why I don’t visit much, and don’t answer. It’s how I deal with it all…I just retreat. I’m forcing myself to get up and running again, though. I’m gonna be just fine.
whoa, Shelly! I am so sorry to hear of this – but, praying God’s blessings on you – that He will keep you strong and healthy – in mind and body. Phew! I really have no words. Stay strong, friend!
barbaras last blog post..Now, THAT’s a moose!
Don’t worry about words, Sweetie. YOU have been through your own share of troubles…and I didn’t have words either. It’s hard to know what to say sometimes. I don’t need sympathy, though. I’m gonna be OK.
Sheesh, what a shocker! Take care of that liver, Shelly!
Aside from the altruistic reasons for donating blood (& blood products), there are a number of other incentives. Sadly, you stumbled upon a biggie – the screens they run can reveal problems that you were previously totally unaware of.
Similarly, I was turned away from donating blood earlier this year and referred to my doctor for follow-up examination. The initial bloodwork indicated, to my doctor, that I had internal bleeding, which you can imagine, just scared the heck outta me when I got that news.
A number of tests and assorted doctor visits later, they’ve determined that I’ve developed pernicious anemia, caused by a serious deficiency of vitamin B12 & iron. This is readily treatable via B12 injections & iron supplements.
Anyway, go donate blood. Do it for the right reason – to help others in need – but also take some comfort in knowing that in doing so, you may be helping yourself too.
By the way, donating blood is also reported to help lower bad cholesterol levels slightly…
Rob O.s last blog post..Busted Again
You got a shock, too! I’m sorry about the pernicious anemia, and glad it’s treatable! The wait for results was worse than the shock, don’t you think? I hate going to a bunch of different doctors.
Blecch!
While giving blood is good, as you said for altruistic reasons, it WILL NOT tell you everything you need to know! I would not have found out that I had a thyroid problem from it. I guess, what I’d recommend to people is (if you have good insurance), get a FULL blood work up every year, and include things like tests for Hepatitis C. That’s really why I wrote about it. I’ve had regular bloodwork through the years, but they don’t test for Hep C unless you SPECIFICALLY ask for that test. And, why would you, if you don’t think you have a problem?
So, low iron? I guess you get to eat liver, don’t you
Oh Shelley – how fortunate and how awful.
jeanies last blog post..It didn’t work
Life’s like that, isn’t it?
Shelly,
I’m sorry to hear you are going through all this… do keep repeating you are lucky to have found out now. Hopefully it will help make the journey a bit easier. My thoughts are with you.
Take Care of Yourself!!!!!!! Deborah
I just sent you an email, but maybe you might have to rethink the whole menopause thing and fatigue…
You’re right about being tested for infectious diseases during your physical, unfortunately, what gets paid during our physicals is dictated by Medicare and insurances. Hep C testing is expensive, as you have probably seen already.
I can’t donate blood b/c I have a positive Syphilis test found during my premarital workup. Do I have syphilis? No, but probably have some type of arthritis or auto immune disease lurking. Sometimes it doesn’t pay to know what else can be out there. Thank you for sharing, it’s important for others to learn about Hep C.
Jennymcbs last blog post..TGIF – It’s My Day Off, Tee Time
Dearest Shelly ~ I am sending you much compassion and caring in this comment. I hear the awfulness of this recent health news. Sometimes we need time to assimilate such powerful information before we can go onto the ‘I’m lucky…’ stage. The truth is, yes you are lucky AND the fact is that it’s not great news.
I believe that your inner strength and faith is with you while you walk your life path. Thank you for sharing with your blogging community. You are in my prayers. junemoon
junemoons last blog post..Exit to the Left, please
Dearest Shelly ~ I am sending you much compassion and caring in this comment. I hear the awfulness of this recent health news. Sometimes we need time to assimilate such powerful information before we can go onto the ‘I’m lucky…’ stage. The truth is, yes you are lucky AND the fact is that it’s not great news.
I believe that your inner strength and faith is with you while you walk your life path. Thank you for sharing with your blogging community. You are in my prayers. junemoon
Not liver, Shelly, just can’t handle liver! Ugh! The anemia had developed gradually, so I hadn’t realized that I was getting run down, but I can tell the difference now that I’m taking twice daily iron supplements & monthly B12 shots.
By the way, your story was inspiration for a blog entry I posted this morning. Wishing you the very best!
Rob O.s last blog post..How Am I Unlike a Turnip?
Sorry you had to hear about your Hepatitis C in a letter! That is as hard as getting an indifferent phone call from a doctor’s office staff person who knows nothing about the virus but calls to tell you that you have it! Those are circumstances that many have gone through but I hope that as more and more people get educated about Hepatitis C many things will change! You wrote about your experience quite eloquently. I hope you don’t mind that I have shared your link with my Hepatitis C lists. If you ever have any questions please don’t hesitate to write. I noticed that your one friend mentioned Naomi Judd but she said she didn’t know of anyone else. May 19th was the first World Hepatitis Awareness Day (1 out of 12 people on the planet have some form of hepatitis) and for that day I put together 2 posters of *Putting A Face to Hepatitis C* They can be accessed at my My Space at http://www.myspace.com/figmento I think many will be surprised at just how many celebrities they will recognize, of course, my friends and I are interspersed in there as well.
It does sound like you are one of the lucky ones Shelly! Mine wasn’t found until 40 years later and by then I already had cirrhosis by biopsy. No alcohol, lifestyle changes, stubbornness and God’s blessings have kept me going this long. The *good thing* about Hepatitis C is that it is very slow progressing.
Thank you for blogging about it and some of the ways that you might have gotten it. As you saw from your googling Hepatitis C has sadly gotten a stigma attached to it that just isn’t true. Many of us are trying hard to remove that stigma and people like yourself are doing more than your fair share in helping by being courageous enough to blog about it. THANK YOU!
Peace
Pam
Oh, Shelly, I read this just now, and I just want to give you a hug. I am so sorry that this has happened to you, although, like you say, in some respects you are fortunate that the situation is not a lot worse. However, I’m aware that this can seem small comfort when you’re dealing with this kind of diagnosis, so please know, sweet Shelly, that you are in my thoughts, and that I’m sending those thoughts (along with the hug!) across the Atlantic.
amypalkos last blog post..Budding Promise
I would take that hug (even from across the Atlantic). I’m sorry about this diagnosis, too. I can live with it, though. Now, I just need to get all my loved ones checked to make sure I didn’t give it to them. Keep your fingers crossed for that!
Geez I am speechless. I am sorry you had to learn the way you did but it is a blessing that you did find out now and can take care of yourself. I have thyroid problems too. Had to have half removed due to a tumor. I understand the waiting game. It was not cancer but I have to take thyroid meds forever. I am always tired etc. Its something I learn to live with. I actually forget about it most of the time. I am sure in time you will be able to not worry too(-: Thanks for sharing the info with everyone.
Cindees last blog post..Another Day @ The Beach
That thyroid can definitely cause a problem. I don’t have it as bad as you did. You are right that the waiting game is hard. Not knowing is the worst. It is indeed a blessing that I found out! Glad that your thyroid problems could be addresses and now aren’t “problems!”