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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63 thoughts on “Fingers across the keyboard

  1. You know my thoughts and prayers are with you and your family, Lauren. These things affect the whole family and I know yours is a close one.

    Fingers across the keyboard? Wishes across the miles.

  2. Lauren, thoughts and prayers are with you. (Was just about to answer your last email and will do that next.) Wish there was something I could do to help. It’s good you posted this…. the image makes it clearer as to what’s involved. Hoping for the best and sending love and hugs. ❤️💓

    • Thanks, Betty, for all you said. Just your friendship and support alone helps tremendously. Please know that. I saw your email and will respond later. It’s interesting, isn’t it? I mean, who thinks about their biliary tree, bile duct, or liver that much, unless there’s a reason? I will survive, though, and my throat is much better today, so that makes me feel better all around. Thanks for the love and hugs and I’m sending some right back to you! 💕🌼🌷

  3. Oh, Lauren! I’m so sorry to hear that you have to undergo the procedure again and hope that your doctor will have more success next time and that it will be good news when the results are there. And I’m also sorry to hear that your daughter has to suffer from this autoimmune disease. I’ll keep you both in my thoughts and am sending you much love and huge hugs! Take care, my dear friend! Xoxo ❤❤❤

    • Thanks for everything, Sarah. Life isn’t always rosy, as they say. Everyone struggles in some way, so we’re not unique, at all. But this is our story and I wasn’t sure about posting anymore about it, hoping not to burden others with our troubles. But it’s nice to know others are keeping us in prayer and positive thoughts. I believe the more the better, right? So thank you again for your friendship, love, and hugs. I’m returning some back to you, too. Enjoy your Sunday, and I hope to catch up with your posts today, too. Falling behind on reading blogs happens so fast, doesn’t it? 🙂 Big hugs, my friend!💕💕

  4. That is very unfortunate that the test wasn’t successful. I hope next time they can complete the test or do some other kind of test (maybe an MRI?) so that you and your family can have a definitive answers as to the cause of your problems. Hopefully it is stones. Not knowing what’s wrong with you, and not being properly diagnosed is a real burden in itself as we often fear the worse.I’ve experienced a similar situation, and the sooner you can get some answers the better. At least it sounds as if you have a good doctor who is experienced in this area.

    • I’m sure next time, it’ll go well. He plans to have a colleague with him for another pair of eyes, who he speaks highly of. I guess my case is unique, and I don’t think he expected things to go the way they did. He was very disappointed. I’m sorry to hear you’ve gone through something similar, too, but I hope you’re all better now. And yes, I’m hoping it’s only stones, also. Fingers crossed, prayers said – over and over…You’re right about the doctors. I (we) couldn’t have a better team, and that makes all the difference. Thanks so much, Binky, and Happy Birthday to Peter today! ;)🎉🍰🎈

    • You got that right, Andrew, and thank you so much! I really appreciate your comforting words…I believe the more praying and keeping positive thoughts, the better…have a good Sunday.

  5. I am sorry to hear that the scenario is a little murky. Pain and worry lessens when we share Lauren. Thanks for sharing your thoughts. Sending you soft hugs, positive vibes and love. Let’s hope for good results and our prayers are surely with you.

    • Thank you so much, Balroop, for your soothing comment. Your words not only warm my heart, but they give me more hope for what the future holds. Hugs to you, and have a wonderful Sunday…💗

  6. Dont feel like your burdening anyone Lauren, we so often feel like that but I dont think we should. Friends are friends for a reason and this is one of them. If it just lightened your load a little to share what is happening then that has got to be a good thing. Wishing you courage as you face whats ahead and waiting to hear the next outcome.

    • Hi Alison, I thought I already responded to you shortly after you commented. But here I find that I haven’t, and I’m so sorry! But thank you so much for your comforting words. They are greatly appreciated. I’ve had my ups and downs, but honestly, I’m not worrying now because my next ercp isn’t until Nov. 29th, a long wait. So there is no point. Once I find out what’s going on, then I’ll have to deal with the good or the bad. Until then, life goes on, and yesterday our daughter left for her move to TN, so it was an emotional morning that lingered throughout the day. More pressing things than just my health. 🙂 She’s texted along the way, which is also good! 🙂 Thanks again, dear friend…❤

      • Ah thanks Lauren. Emotional times watching our children move on. My daughter is back from London for a couple of days from tomorrow. I havent seen her for a while so I am really looking forward to spending time with her. I miss her so much. I hope you find plenty to keep you busy so November doesnt drag to much, waiting can be dificult and not always easy to not worry. Thinking of you x

  7. There is a loving and supportive energy in the like minded souls in our Global Village (as Grandfathersky calls it). No wonder you felt you could reach out and you can, Lauren. You will be safely caught here, with much love. The unknown is scary, especially health wise. You are wrapped in loving energy, always. ❤ xXx ❤

  8. OMG!
    Of course you wanted to tell us. It frees the spirit up a bit. Good times and bad times, that’s what sharing is all about. Also, you might connect with someone who has gone through what you are gong through now, and they may have valuable info!
    To you and your daughter, may the positive power of the universe be your next visitor! xoxo

  9. Lauren, I hope you soon find the answers you need. To have too much time to guess often paints the darker pictures.
    Believe in the positive as much as you can and trust in the future.
    I know, tough to do but so many are thinking of you and wishing you the best outcome. 🤗 .

    Miriam

  10. Hang in Lauren. Let us focus on gallstones. I’m sorry the test has to be repeated. I know that crappy feeling. I once had to repeat a colonoscopy. You know how much we all hate that prep the first time round. but to do it again, arg! Thanks for sharing with us. Incidentally, my husband has liver disease, so I understand all the jargon. His liver enzymes were dangerously high last year, sending him to the hospital twice. But our naturopath gave him new life with IV treatments to help out the liver. His enzyme count went right back to normal after 3 (expensive) treatments. Try not to worry unless you have to is my advice 🙂 xx

    • Thanks so much for all you wrote, Debby. I’m trying to focus only on stones, but sometimes my mind strays…I understand about the colonoscopy prep also. One trick I learned was that crystal light lemonade could be added to the drink and it’ll still work. So it’s easier to swallow. No pun intended. Well, yes, pun intended. Anyway, keep that in mind for the next one. 😉 I’m so sorry to hear about your husband, but I’m glad those treatments worked for him. It’s scary because unlike kidneys, we only have one that is so very precious. I’ll admit, though, that its reassuring knowing you understand all the jargon, yet wishing you didn’t for the obvious reasons. I hope your husband continues to do well, also. And you offer wonderful advice, which is what I’m trying to do. Basically, now that I’m feeling better, life goes on as I await the next date. Thanks again. Sending hugs and love xo

      • Thanks for your lovely wishes too Lauren. You will be fine! Just keep focusing on that. We get what we focus on, so don’t make it fear! ❤ xx

  11. I’m slow on getting to this, Lauren. I think your son’s idea for a title is great. Yes, crossing fingers and toes and opening hearts and minds for a successful outcome in your disease prognosis. A good friend of mine (since college) never drank and her liver began to fail. (I think most people now know that liver problems rarely mean someone is a hard drinker). Anyway, 25 years ago she had a liver transplant. Scary time for her (at the time her son was 1 year old) BUT she’s lived a fabulous life these past 25 years and is a strong advocate for transplant survivors.
    That said, I hope your next test is successful, and the results are more positive than the worst ones you worry about. I appreciate that you shared this with your blogging friends. I do believe in the power of our good thoughts. xo

    • Don’t ever worry about getting here slowly, Pam. It’s inevitable in WP. 🙂 Anyway, thank you so much for your thoughtful comment and for sharing your friend’s successful transplant story. That is truly amazing! It’s so easy to focus on the sad outcomes, but when we hear of the many success stories, it definitely offers hope for the future. I appreciate your well wishes, too. Right now, I’m fine, just waiting. But my daughter ended up in ER last night from another attack. It’s heartbreaking each time to see her suffer, although, she’s fine now, and that’s what matters most. Anyway, thanks again and take care. xo

  12. Lauren, I apologize for getting so behind and just reading this now. It’s wonderful that you are able to openly share this and possibly help others. I’m praying every day for a good outcome for you and for Steph. Sending you lots of big hugs and much love. 🤗🤗🤗❤️💕❤️

    • No apologies necessary, Michelle. I’m so behind, too, with Steph leaving yesterday and spending time with her on Saturday. Those email notifications aren’t forgiving. 🙂 Anyway, thank you! I’m not worried now because there’s no point. I have to wait until 11/29 for the next ercp, so until then, I’m just taking care of myself. It is surreal though because I’ll get answers right around the holidays. Will it be good news or bad? Oh well, life goes on, and we had more pressing things going on with Steph. Bittersweet, but exciting. Sending you lots of love and many hugs, too, my dear friend. xoxo

  13. Dear Lauren, you’ve been in my thoughts and heart since the day I read you post. As I was due to travel the next day I was stressed with packing, sorting etc so wanted to write in calm and considered state of mind.

    How are you doing now? I realise it’s nearly been two weeks and I’ve missed many of your posts. Have you had any further news of new test? There are so many factors here and one major element is lack of knowing exactly what you’re suffering from. The imagination is always ready to charge ahead with the worst case scenario … I d hope you have some answers soon.

    Whatever they are, it is a deeply worrying time for you and your family … I knew you daughter had an autoimmune disease but not how serious nor that she will require a liver transplant. Terrifying times … patience, a positive mindset, and togetherness is the force to help you all. My heart is with you and your family. Big hugs & love ❤️🤗

    • Thanks for your concerning and comforting words, Annika. As to me, I’m feeling good, but the procedure on the 11th was incomplete, so I have to re-do it on Nov. 29th, long wait. It’s not life or death, otherwise, I’d go in sooner. But this is the date that my doctor and his colleague are available, so I’m patient. I’m trying not to worry because there is no point until I actually have answers. The surreal part is that this will all take place right around the holidays and the news will either be good or not so good. Sometimes, things are out of our control, so I’ll deal with whatever at that time.
      As to Steph, she’s fine, but has her moments, which is why her big move was scary for us, her parents. But, she also has to live her life, and thankfully, this disease isn’t debilitating (until it gets worse). If she still lives far away from home, you know we’ll be by her side as soon as we can. But her b.f. has been through tough times with her, so we know she’s in good hands. Surprisingly and gratefully, Vanderbilt Hospital is in Nashville, which specializes in her disease. Coincidence? Not sure, but we’re grateful for that. Anyway, life goes on, and I do appreciate your warmth and support. I’ll probably do another update once I know for sure. Big hugs to you, too! 💗💗💗

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