Fingers across the keyboard

Dear Friends,

This is a follow-up to my last post on Sept. 19th, and I’m typing as thoughts pour out, so this is more raw than edited. As you may remember, I’ve had a medical issue that landed me in the hospital over a month ago, and I’ve been anticipating a procedure that hopefully would’ve brought answers. Well, the procedure was last Thursday, an ERCP. It’s where a tube passes through the mouth, esophagus, and stomach into the first part of the small intestine. Then a catheter goes into the bile duct to detect causes for high liver enzymes (all non-alcoholic related), severe abdominal pain and jaundice. The doctor injects a dye so that x-rays can be taken of the biliary ducts. I’ve provided an image below if you’re interested. 

Image result for bile duct and liver anatomy

Surprisingly, the doctor (a bile duct expert) couldn’t get the instrument all the way down, in fact, barely down at all because my common bile duct is so scarred. I’ll spare the gory details, but long story short, it was incomplete. This means I have to repeat it next month. Honestly, when he spoke to my husband and I after I had been in recovery and I found this out, I felt depressed. I felt my shoulders drop, knowing, first of all, that I still have no answers, secondly, he still can’t rule out some scary diseases (one of which my daughter has), and thirdly, I have to do this procedure again. 

Everyone was so nice, though, and I’m grateful for an awesome team of doctors – doctors who we know because of our daughter’s experiences. And my doctor was genuinely disappointed with the turnout. But he’s also performed enough of these that he knew when to stop trying before causing complications. I thank him for that.

So, the symptoms I’ve had can be caused by gallstones in the bile duct (gallbladder is out), Primary Schlerosing Cholangitis (PSC, the auto immune disease my daughter has), or Bile Duct Cancer. I admit to being scared and have had some emotional moments. I hope it’s just stones, which are dangerous alone. Any of these causes affect the liver because if bile isn’t taken from the liver through the bile duct into the small intestine, the liver then becomes “sick” and begins to fail. Liver failure is fatal. For PSC, the only cure is a liver transplant, which is what we’re anticipating for our daughter in the future – a future that holds so many uncertainties. 

So why I am blogging about this? I don’t know. Maybe part is to bring awareness to the bile duct and how rare some medical issues can be involving it. Until our daughter was diagnosed, I didn’t give the bile duct a second thought. Nor my liver because I’ve never been a big drinker. This whole thing has been surreal – the fact that I’m experiencing everything similar to my daughter’s symptoms. She doesn’t drink alcohol at all, so it’s just an auto-immune disease that chose her. Ask anyone who knows me..I’m a lightweight when it comes to drinking. So, it’s all a case of being unlucky just like those who are diagnosed with cancer or some other horrible disease.

The upside to sharing what I’ve been undergoing is that in spite of the continued anticipation, the unpleasantries of another ERCP, or fear of the unknown and known, for that matter, life goes on. I feel better physically, although my throat still hurts, but it’s better than yesterday and the day before that. My mindset is healthier, and that doesn’t mean I’m not realistic either. The outcome will be good news or it will be daunting news. Regardless, I want answers. I want to know what’s going on inside me. However, I’m not trying to burden you by posting about this. Maybe what I’m going through will resonate with someone and be of some help even in a small way.

Selfishly, though, I ask for your ongoing positive thoughts and prayers. And I thank you for reading this longer-than-planned post. 🙂

Image result for moving forward

Moving forward with hope in my heart and love for my family and friends who have provided tremendous support. Lauren xoxo
p.s. The title of this post is credited to my son.
p.s.s. Both images are from Google.

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Dear PSC,

Your invisibility plays havoc
On how she is perceived
For when you strike,
She hurts and so do we

You don’t show your face
The pain is from within
But it’s no less horrific
Yet she won’t let you win

She’ll fight with both fists
Even from the ground
You may land a good punch
But you won’t keep her down

Our hearts hurt for her
She’s our precious daughter
We’ll fight you by her side
Come hell or high water

Lauren Scott © 2015
(for S ♥)

“Finding a Balance” is available!

Dear Family and Friends,

My book, “Finding a Balance” is now available on my publisher’s site, Xlibris,
Amazon and Barnes & Noble. The links are below if you’d like to order a copy
and I want to thank you all in advance for your support to my writing, but most importantly, to the awareness of my daughter’s disease, PSC, and to becoming an organ donor.

More information is found on my prior blog post: http://lscotthoughts.com/2015/01/12/working-on-finding-a-balance/

BOOK COVER FINAL 1.26.15

http://bookstore.xlibris.com/Products/SKU-000756814/Finding-a-Balance.aspx

http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=Finding+a+Balance+Lauren+Scott

http://www.barnesandnoble.com/w/finding-a-balance-lauren-scott/1121084225?ean=9781503528000

ALL PROCEEDS WILL BE DONATED TO THE CHRIS KLUG FOUNDATION, which is dedicated to promoting lifesaving donation and improving the quality of life for donors, donor families, organ transplant candidates and recipients.

chris klug foundation(chrisklugfoundation.org)

Please also feel free to visit my Published Work Page
on the tab 
beneath my header.

Much love to You All! Lauren ♥

Working on “Finding a Balance”

Dear Friends,

I am embarking on a new adventure and this is an introduction. My second poetry book, “Finding a Balance” is almost ready for publication and it’s nice to not be such a novice the second time around. This book isn’t just about sharing more poems I have written. It’s not only about me. It holds a deeper meaning; the new adventure part. The proceeds will be donated to an organization for a purpose close to my heart and my family’s. I’ll begin, though, with a back story…

Part I:
After three years of abdominal pain and ongoing tests, on October 4, 2012, our daughter, Stephanie, was diagnosed with Primary Schlerosing Cholangitis (PSC). She was 21 years old. Her doctor was the head of the Gastroenterology department and was extremely competent. He didn’t beat around the bush. He told us this wasn’t good. Below is a brief description:

Primary sclerosing cholangitis (PSC) is a very rare condition where the bile ducts inside and outside the liver become inflamed, leading to scarring, narrowing and blocked ducts, potentially causing a build-up of bile in the liver, and in some cases cirrhosis. Patients with PSC are at a high risk of developing liver cancer. Symptoms begin gradually with abdominal pain and itchiness and include worsening fatigue and, later, jaundice. Liver transplantation is the only cure for prolonged life. This is usually needed within 10 years of the diagnosis, but each patient’s case is different. 

I’ll try to keep the drama at bay, but I’m sure you can imagine our reaction. Our daughter doesn’t drink or do drugs so there is nothing she did to provoke this diagnosis, which is why it’s called an auto immune disease. This was a shock to our entire family. My husband and I had many emotional moments, wishing we could take her place. We were paralyzed of doing anything that didn’t need doing for the rest of that year, except for the necessity of living. We asked God why…why Steph? She has a heart of gold and is simply a nice, caring individual. Many have asked these same questions and there are still blanks waiting to be filled.

Since 2012, she has had symptom flare ups with several ER visits, but otherwise, on the outside, she’s beautiful and looks perfectly healthy. The doctor told her to live life to its fullest. That was his profound advice. She has a stellar attitude. She lives in the HERE AND NOW and there is no other option. She is due to graduate this year with a Bachelor’s Degree and has been busy with school, friends, her boyfriend and of course, family, with no time to sulk. She is human, though. She has broken down at times, but I think, as her parents, our score is higher.

So…I’m telling you this not for sympathy but to bring awareness to this horrible, slow progressing, life threatening disease and most importantly, the need for organ donors.  

Part II:

All proceeds from my book will go to The Chris Klug Foundation (www.chrisklugfoundation.org), also found on Facebook.
Chris (born November 18, 1972) is a professional alpine snowboarder. After receiving a liver transplant in 2000 to treat PSC, he went on to compete in the 2002 Winter Olympics in Salt Lake City, winning a bronze medal in the Parallel Giant Slalom. This was the first and so far only time a transplantee had competed in the Olympics. He also won a bronze medal and lit the torch at the 2002 National Kidney Foundation U.S. Transplant Games. In 2004, Chris released a book called To the Edge and Back: My Story from Organ Transplant Survivor to Olympic Snowboarder. (Wonderful book of inspiration and hope)

chris klug foundation

Below is an overview and mission of his Foundation:

Founded in 2003 by liver transplant recipient and Olympic snowboarder Chris Klug, The Chris Klug Foundation is dedicated to promoting lifesaving donation and improving the quality of life for donors, donor families, organ transplant candidates and recipients.
CKF is passionate about sharing the message of donation, and educating people on the impact one person can have on the lives of so many others. Over one hundred and ten thousand people are currently on waiting lists for solid organ transplants across the U.S.A. CKF is devoted to making a difference to those waiting for a second chance. We are also there to help promote the message of organ donation.
Working with young people across the nation, CKF provides campaign materials and information for “Donor Dudes” chapters in high schools and college campuses. People everywhere are touched by organ donation and transplants, and we want to get the message to everyone.

The publication for my book will be at the end of this month or beginning of February. I’ll do a separate post when it’s available and again, I’m very excited for this new collection to have a greater, deeper purpose.
Our life now is about “Finding a Balance” between PSC and all the good things!

Someday Stephanie will need a liver transplant so becoming an organ donor is an unselfish way of giving another soul a second chance. 

Thanks so much for reading and I wish you all Happiness and Good Health!
If you’re so inclined, prayers and positive thoughts
for Stephanie will be greatly appreciated.

Lauren
♥ ♥ ♥