Topic: Going backwards

Good evening,

I'm still new to the group after posting in December about my sisters resection being halted.  She is going down hill fast and we don't seem to know why.  She was discharged on Monday, hoping that being at home she would start to eat and generally recuperate for chemo.  She just didnt pick up at home and Her gp admitted her on Friday.  She is in severe sepsis but getting no better.  She is till drowsy, confused, not drinking or eating.  Because I'm a nurse my sisters husband has asked me to handle dealing with doctors which I am very happy to do but I feel like we are in a nightmare right now and its getting worse.

We're missing something here.  I know she cant be cured but 4 weeks ago she was well enough for chemo to be the plan. But She has just got progressively worse since her external drain was reversed on the 30th December.  She only finished a 7day course of intravenous antibiotics last Saturday.  My sister is in a hospital 300 miles away for me so I am reliant on doctors calling me back.  I'm still waiting 10 hours later.  Tomorrow I'm ringing her consultant at the main hospital that did her surgery (why the local hospital didn't ring him on Friday is anyone's guess) to put him in the picture and ask that she is transferred.  She's sicker now than she ever was after surgery on 17th Dec and I'm beginning to think this is more than an infection in her biliary tree but something more like an abscess.  She has right sided pain - she had portal vein embolisation to the right side in November - it's anyone's guess with a ct what's going in there.

I'm sorry to rant - but if anyone has any nuggets of wisdom I'm all ears.  Excuse the spelling  and grammar - I don't normally do,such a big post on the ipad!

Clare

In the stars now . . . .

Re: Going backwards

Clarem....so sorry to hear the latest.  You may be right in your assessment of the possible abscess caused the by portal vein embolization. Attached please find a previous posting:

http://www.cholangiocarcinoma.org/punbb … 282#p12282

Tons of good wishes, please let us know, fingers are crossed for the sepsis to be conquered quickly

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Going backwards

Dear Clare I am so sorry to hear that your Sister has not improved, I know that Sepsis is a nasty one. I have no Medical words or words of wisdom, just that I am sending prayers and big hugs your way!

                                         I asked for strength.
                     God gave me difficulties to make me strong.
                                         I asked for wisdom.
                              God gave me problems to solve.
                                        I asked for prosperity.
                         God gave me brawn and brain to work.
                                         I asked for courage.
                           God gave me dangers to overcome.
                                         I asked for patience.
            God placed me in situations where I was forced to wait.
                                         I asked for love.
                     God gave me troubled people to help.
                                         I asked for favors.
                               God gave me opportunities.
                               I received nothing I wanted.
                             I received everything I needed. By Aaron Hoopes

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Going backwards

Dear clarem,

I am sorry that I can't help in solving your dilemma, but know I am praying for your dear sister. You are a wonderful advocate for your sister and I am sure you will get to the bottom of what is making her feel bad. Much love and many hugs being sent to both of you.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Going backwards

Clarem, I too am going to say a special prayer for your sister. Follow Your instincts. youre knowledge and background make you a wonderful advocate for your sister. Still, I'm sure it's very hard to completely assess the situation and communicate with the doctors long distance. Sorry I haven't medical advice. Hang in there.

Willow

Re: Going backwards

Thank you Marion, Lainy, Pam and Willow for all your support.  I got a message to her consultant this morning and things have moved forward for the better.  She got transferred this evening to the hospital where her surgery was done and where her Hepatic surgeon is based. 

The blood cultures show she has an ecoli infection and the CT that was done today shows a collection of fluid under the liver.  Not sure what the fluid collection is yet but the plan is to drain the collection tomorrow.  I will hopefully get to speak to her consultant again tomorrow - he is such a lovely man and he completely took on board all my concerns when he rang me today.  She is still very ill but I feel better just knowing that she has been transferred.  Her clotting must be a bit out of whack as mum said they gave her vitamin K just before the ambulance arrived to transfer her.

Clare

In the stars now . . . .

Re: Going backwards

Oh, Clare, I feel better too. That is half the battle. An E coli infection can be taken care of, they come so easy too but a good anti biotic will do the trick. I am so happy for all of you that you are where you are confident and happy with the responses you are getting. Wishing you nothing but the best. Be strong! And thanks for this update.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Going backwards

Clarem....hoping for the E-Coli to clear quickly (now that she will be bombarded with antibiotics.)  Fingers crossed for continuous good news.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Going backwards

Hoping your Mum starts to feel better soon.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Going backwards

Clarem,  this sounds better.  I am hoping that now this more accurate diagnosis and aggressive treatment will bring her back to health so she can continue with treatments for CC.  Will keep you both in my thoughts and prayers,  Willow

Willow

Re: Going backwards

I hope your mom starts to feel better soon. I wonder if the fluid might be bile? I had a "sac" of bile last year. But because I was otherwise healthy my surgeon wanted to see if it would go away on its own once my infection was taken care of and it did. I hope the drainage goes well for her and they can come up with a plan. I'm so glad she got transferred.
My thoughts and prayers go out to you.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Going backwards

Good evening all from a very cold Scotland.   Thank you again for all your support, well wishes and knowledge.  My sister eventually got the abscess drained today and I'm setting off tomorrow morning for the hospital to spend three days with her.  I'm hoping she'll be a whole lot better than when I saw her 10 days ago.

Clare

In the stars now . . . .

Re: Going backwards

That's great that you are going to be with her. Your gut was right on when you suspected an abscess. Here's to her quick recovery from this awful complication!

Willow

Re: Going backwards

My mom had clear PET scan one month after chemo/radiation. Then approx. one month later, she became jaundice. CT scan showed blockage of bile ducts which was treated with two internal stents. One week later, she developed fevers. After two hospitalizations, IV ATB,  stent changes, was discharged home. Only to be readmitted again after another infection. During an attempt to place an additional external stent due to blockage of another part of the liver, she became septic and was in the ICU for 5 days. Was placed on zosyn and daptomycin, recovered, sent home for 4 weeks of IV ATB.   She's doing better but now since the external stent placed, a lot of abdominal pain. Can't win.  I hope your sister is doing better.  The bacteria that grew: e coli, VRE.  Since the clear PET scan, it has been a roller coaster ride. 

Anna

Anna

Re: Going backwards

Anna,

Sorry to hear about your Mom's troubles. I was so happy to hear of her clear PET scan and now this. I am hoping things get better in the future.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Going backwards

Dear Anna, I am so sorry about your Mom's trials and tribulations, as if our loved ones are not going through enough already! When Teddy had his Ecoli krap, they put him on Levaquin and it did the job very quickly. Hoping to hear Mom is doing much better in your next report. BTW, does the Doc know she is in pain from the new stent? Teddy also had an external stent but never any pain. I would let the ONC know. Again wishing and sending good juju for Mom!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Going backwards

Thank you Anna.

My sister got home on Thursday. Her consultant felt that she needed to go home so she is on oral antibiotics and anti-fungal capsules.  She still has a drain from the abscess and chemo just cannot go ahead at the moment.  To be honest she is weak, frail, dozes for most of the day, her appetite is diminishing again and pain seems to be creeping up.  She is unable to look after her 3 year old daughter and a family member is with her all the time.

It is very difficult to get the abscess to heal as it is on the side of the liver that was 'shut down' for the portal vein embolization.  That part of her liver would have been removed had the liver resection not been halted.

Clare

In the stars now . . . .

Re: Going backwards

Clarem,
I am so sorry to hear that your sister is still struggling to get through the infection/abscess. That's a serious complication from that portal vein embo. It must break all if your hearts that she can't care for her tiny daughter. Thank goodness she is home now and hopefully in a more comfortable place than the hospital. Also wonderful that she has so much support from family and friends. I'm sure you could use support as well to get through so many unexpected turns. I pray your sister recovers from the infections and regains strength to move on to chemo if that is her goal.
Sincerely, Willow

Willow

Re: Going backwards

Thank you Willow.  To be honest we are no further forward than we were a month ago but at least she is home which she needed to be, even if it is just for a few days.

Clare

In the stars now . . . .

Re: Going backwards

Hi Clarem, just to say I am thinking of your sister and hope she will soon be much stronger and feeling better.

Best wishes.

"Even Darkness is not dark for you, and the night is as clear as the day.... " RIP Dad, always loved.