Introduction: Stephen Kinsey
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Shelby….I would like to follow Lainy and welcome you to our site. The diagnoses of this disease come as a surprise to virtually everyone on this site. It moves along silently and rarely is detected in the early stages of the disease. Not until blockages, pain, or other symptoms appear will further testing lead to the diagnoses of Cholangiocarcinoma.
Seems that the drains are doing the job so far and I hope for your Mom’s bilirubin to continue to drop. Fingers are crossed.
In re: to drainage bags I would like to add a link to a previous discussion:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8471
Hopefully our Betsy will come around and share with us the newest and latest, as she has been dealing with this issue for quite some time now.
Shelby, you might want to consider taking Lainy’s suggestion and repost your introduction with a new thread. Not that you have not done so already, but it might help others find you if and when you have your very own introduction thread. Let us know if you need help.
Most of all I am happy that you have found us – this is the beginning of a warm relationship with fantastic members, who have first-hand experience with this disease and always, are open to welcome others into this very special group of people.
Hugs,
MarionMy heart sank when I read your post about Steve. So very sorry for your loss as based on his post he seemed like an amazing man and having read his obituary I can see that he was.
Hugs,
-Randi-Dear Shelby, welcome to our remarkable family but sorry you had to find us. Also very sorry to hear about your Mom. When my Teddy had a couple of drains he would pin them from underneath to his clothes. They also have leg bands to hold them in place. I too hope Mom can start her chemo. May I ask where she is being treated and he age? WIshing her the very best and know that you have come to the right place. Please keep us updated on her progress, we truly care.
P.S. May I suggest you repost your Introduction under Introductions as I am afraid it may get lost in this other thread.Hi all,
My name is Shelby Sachetti and my mom was diagnosed with Cholangiocarcinoma three weeks ago. She is not a candidate for surgery at this time because the cancer has creeped into her liver. She was admitted to the hospital two weeks ago because her billirubin was a twelve and she is very jaundice. They are currently trying to unblock her bile ducts. The stents were not completely successful so now they have added 3 drains and are adding a 4th one tomorrow. Her billiruben levels are down to a 7. Hoping they will go low enough to leave the hospital and start chemo. She may have to live with these drains for the rest of her life. Does anyone know of something that I could buy or make for her that would hold the bags? She is so uncomfortable every time she has to get up and walk around. We tried an abdominal band and it was not very comfortable.
Anyway I am so happy to have found this website. The discussion boards are very helpful to read and gives me hope that she may have a chance to get through this and extend her life as much as possible. This has been such a blow to our family. Her cancer is already a stage 3 but she is fighting regardless of the odds against her.
I am so very sorry to hear about Steve. Please accept my sincere prayers and sympathy to Steve’s Family and Friends.
Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light.My hearts and prayers are with you and his family. I read his obituary and also want to thank him for giving in his death, the more studies on rare diseases, means more lifes saved.
Lots of prayers-CathyThanks for letting us know that Steve lost his battle with CC and for sharing his obituary with us. It sounds like he was an amazing young man with so much to give and so much to live for I am sure that he will be greatly missed by all who knew and loved him. My sympathy and condolences to his family and friends.
Darla
Thank you all for your warm welcome. Sadly, Steve lost his battle on October 5th. I wish you all the very best and appreciate the support you are providing others in this journey.
Stephen…I would like to follow the others in welcoming you to our site. I assume that you had a plastic stent which then had been removed, but had not been replaced. Generally stents are replaced with either plastic or metal. The later is considered to be permanent. Stephen, please share more with us.
I am glad that you have found us – I am looking forward to many more discussions with you.
Hugs,
MarionHi Stephen, sorry you are going through all of this. I consider my disease chronic since I know it is a constant war. I would love to hear what your homeopathic doctor advises for nutrition and supplements. I have changed my diet and I really believe it helps.
LisaHi Stephen,
Welcome to the site. Sorry that you had to find us all and I’m sorry also to hear what you are going through right now, you sure have a lot to deal with. I’m glad that you have joined in with us all here as I know that you will get tons and tons of support from everyone. It sounds to me like you have a very positive attitude and that you are determined to beat this and that is music to my ears!
Have you looked at the nutrition board that we have here? Hopefully you will find some good posts and into over there. If you haven’t seen it, it can be found here –
http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=12
Let us know how you get on with your app with the homepathic doctor and what he/she says to you as I am sure that that will be of great interest to others as well.
I hope that you keep coming back here and let us know how things go for you and please know that we are all here for you.
Best wishes,
Gavin
Dear Stepehn, Confucious says, welcome to our extraordinary family but sorry you had to find us. Actually it’s me, not Confucious but he would also say, you are a very courageous man with a great attitude! May I ask where you are from and where you are being treated? You have had one wild roller coaster ride and it sounds like you are due one big deserving break! Please keep us updated on you as we all truly care and you have come to the right Board.
Greetings all! My name is Stephen Kinsey, I go by confucious48 online. 3 months ago diagnosed with cholangiocarcinoma – I also have Crohn’s Disease, Primary Sclerosing Cholangitis, chronic pancreatitis, enlarged spleen, and recently had gallbladder removed which ended up being riddled with cancer. Been told I am a somewhat complicated patient
I have a paracentesis drain bag attached to my side due to chronic ascites, and had a temporary stent in my primary bile duct, which they removed, but now the bile flow is obstructed again and contributing to the ascites, so I’m trying to have a permanent stent put in. My physical state is in constant flux, there are concerns it might put me more at risk to have the procedure done, but I believe it is the best option for me.
Also have consultation set up with homepathic physician to begin dietary, herbal, and supplemental therapy. I’m determined to beat this! Best of luck to everyone on this site seeking help, I hope you find what you are looking for and find your way to good health
Stephen Kinsey aka confucious48
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