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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Need prayers and positive thoughts - update on Great Danes i.e. Deb health


#1

Hi everyone,

Need positive thoughts coming my way. I've been hospitalized for 8 days now. Hospitalized with 7 bili and 700 alk phos. Have had 3 ERCP's.

This has been successful in unblocking and stenting a bile duct they could not get open. In addition last week I noticed a gradual buildup of abdominal fluid and really didn't realize it was ascites because I've never encountered it. CT scan confirmed. Had 3 L drained off Monday and in 48 hours I had swelled to another 3.3 liters. Drained on Wed. Too fast.

So CT scan revealed the usual enlarged liver, fluid in abdomen, enlarged lower part small intestine (I'm wondering if what they are calling enlarged is my internal pouch ; had colectomy because of UC.) an apparent mass behind the pancreas, good and bummer.

PET scan Friday to see if this mass can be better discerned.

I'm doing fine. It is what it is - hopefully not a malignant cancer and perhaps just a shadow on the screen. Patiently waiting it out and wanting to get home to my kitties.

Thanks for your positive thoughts.

Cheers! Deb


#2

Deb,

Keep strong!! Sending positive thoughts and you are in my prayers, wishing you all the best and hoping they can get you sorted out quickly and home to your kitties!!! Only been on this site a couple of weeks but I have noticed your support for others.... get well soon!


#3

update: PET this am shows a large, undefined mass behind and part of liver. Hmmmm! I'm still calm. I've accepted for so many years the stats of cholangiocarcinoma but I don't know yet if that is it. The biopsy is scheduled for Monday. and today another paracentesis to pull fluid off abdomen. So I have a free weekend here in the hospital to be waited on and have my meals made for me. I might actually gain some weight. Smile!

everything has gone so smoothly and efficiently now from transport people, docs responding quickly to my requests, floor director of nursing, nurses, techs. It has actually been as pleasant a stay as possible. Keep up the fight everyone. The fight to have yet another happy day! Cheers, Deb


#4

Mass in liver. Put out 9 liters fluid last week in ascites and ready for Monday morning paracentesis - another 3 to 4 liters. I also have a biopsy of mass tomorrow - maybe. It is in a difficult area to get to and high possibility they will not get biopsy. Getting nervous - difficult to stay positive and upbeat. Still in hospital - weekend of attempts to lessen ascites and monitoring situation. I have had a resectable cholangiocarcinoma (bile duct cancer) in 2005. Another diagnosis will not allow further transplants. I will post when I find out. I could really use the support, and words of encouragement for those of you who read this. That's part of the reason I'm on the blog. Thanks! cheers! deb


#5

Hi Deb - just now read this. Are you still in hospital? Thinking of you and hope you bounce back quickly, fingers crossed. I know what you mean about getting home to the kitties, I've got 5 I don't like being away from!


#6

Yes still in. Much ascites - avg 3 L every other day. 3.5 L taken off yesterday. Getting logistics of outpatient paracentesis and medicine to minimize electrolyte, blood pressure, ascites issues. Also waiting for results of a very difficult biopsy of posterior mass in liver. Hoping tomorrow or Thursday. I'll post again but not many people seem to look at this discussion. I have learned from this - if people are scared and asking for support even a few words to let them know their peers are standing with them. thanks alix. cheers Deb

Alix said:

Hi Deb - just now read this. Are you still in hospital? Thinking of you and hope you bounce back quickly, fingers crossed. I know what you mean about getting home to the kitties, I've got 5 I don't like being away from!


#7

Hi Deb,

I'm sorry to hear things are in flux for you- please know I am praying for your healing, and am thinking of you.

I'm looking forward to hearing more news as it is possible to post.

We are experts on hanging in there, aren't we?!

Keep the faith,

BB


#8

I am so sorry to hear of you have gone through but you seem very positive! Keep smiling! Keep the thoughts going about not having to cook or clean! Love the upbeat attitude!!


#9

Hi Deb,

This is the first notification I've gotten from the list in quite awhile, or I would have written a long time ago. You've been going through so much and this is different than your last hospitalization. I'll be sending prayers your way that you show some improvement soon - just let the ascites slow down! - and they can reach the mass for clean biopsy. I hope it's not a recurrence of CCA, but wouldn't that be an odd presentation? Usually it begins as biliary dilation, yes? And not strictures. I am just going to pray that it's something that's completely treatable and will just decide to go away on its own.

Was glad to hear your experience in the hospital has been very good this time. I take it you are at Swedish? That's what you prefer, isn't it? Of course, you'd prefer no hospital and no need for one! I'm keeping my fingers crossed and praying and sending you lots of healing energy. Just rest and receive the good care by everyone. Much love, Dana


#10

Hi Deb,

You don't know me, but after watching my husband go through months and months of frequent hospitalizations, ERCPS, cholangitis infections and numerous bandings of varacies my heart goes out to anyone living through the endless day-to-day battles and questions you are facing. My husband had a liver transplant in February and we are so grateful that he got his life back -- many changes, to be sure, but we feel unimaginably lucky. I will keep you in my thoughts & pray that your shadow is just that, and that you receive a transplant and a new chance at a better life! Stay strong!


#11

Hi Deb,

Thoughts and prayers coming your way. Plz stay positive as I believe a positive attitude can affect you in a very positive way. I will keep watching for your updates. Take care. Claire


#12

Sorry to hear all the troubles. I commend you for your bravery and willingness to keep fighting. God bless you and I will pray for you right now. I'm early on with my PSC and UC but know I will face such struggles. I pray that I keep as positive as you. Don't give up, there is always hope as long as you let God lead the way.


#13

Deb,

Any word on the biopsy results yet?


#14

I will be praying for you ..... That its not malignant cancer..... Keep the faith...


#15

Deb,
Prayers and good thoughts right now for a wonderful fellow PSCer and human being. You will be included in Prayers of The People of Saint Andrew Anglican Church, Spring Grove, Illinois, at the August 17th Mass. We are a prayer community and have had amazing results. Fasten your seatbelt. Prepare to get well!

Paul


#16

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