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Cholangiocarcinoma: Dealing with husband's long stay in ICU

Posted by journey2025 @journey2025, Apr 27 10:28am

My husband diagnosed 12/22/24. Had the following surgery on 03/03/25:

1) Diagnostic laparoscopy
2) Exploratory laparotomy
3) Cholecystectomy
4) Extended R hepatectomy
5) En-bloc resection of extrahepatic biliary tree
6) En-bloc portal vein resection and reconstruction
7) En-bloc porta-hepatis lymphadenectomy
8) Roux-en-Y hepaticojejunostomy reconstruction
9) Excision of small bowel nodule

Surgery was a success with negative margins. He is still inpatient and has been in ICU since 03/30/25. Can anyone share similar experiences??

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 9 6:23pm

@journey2025, this must be so hard for you and your family. A long ICU stay is exhausting in many different ways.

How is your husband doing? Is he out of ICU now? How are YOU doing?

REPLY
1 reply
journey2025 | @journey2025 | May 10 5:42pm
In reply to @colleenyoung "@journey2025, this must be so hard for you and your family. A long ICU stay is..." + (show)
@colleenyoung

@journey2025, this must be so hard for you and your family. A long ICU stay is exhausting in many different ways.

How is your husband doing? Is he out of ICU now? How are YOU doing?

Jump to this post

Hi Colleen, Praise GOD! We were downgraded out of ICU on 05/01/25. They took out his tracheostomy on 05/08/25. Infection disease discontinued all antibiotics yesterday (has been taking them since 02/06/25). NG tube out today. Plan is to go to inpatient rehabilitation to help with all the deconditioning that has occurred. He still requires assistance with standing ~ but overall he is rapidly improving now. No words to describe this journey ~ but so grateful for GOD’s mercy!!! His vital organs have recovered ~ kidneys are good now, liver is good, heart is good, and lungs are good.

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1 reply
melbourneaussie69 | @melbourneaussie69 | May 10 5:48pm

I was intubated in Intensive care for 5 weeks I awoke unable to move or speak, it took months for me to rehabilitate. I did however have to have a lung transplant which hindered my ability to exercise. I did what I could until the transplant. After the transplant I had to really push myself to learn how to walk again, I engaged with the physiotherapists who were legends. I was discharged and required a walking frame to get about but within weeks I pushed myself to start walking without it. I am five years in now and able to do most things, requiring help occasionally with strenuous tasks. But overall, I am back to my normal self.

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1 reply
journey2025 | @journey2025 | May 11 12:56pm
In reply to @melbourneaussie69 "I was intubated in Intensive care for 5 weeks I awoke unable to move or speak,..." + (show)
@melbourneaussie69

I was intubated in Intensive care for 5 weeks I awoke unable to move or speak, it took months for me to rehabilitate. I did however have to have a lung transplant which hindered my ability to exercise. I did what I could until the transplant. After the transplant I had to really push myself to learn how to walk again, I engaged with the physiotherapists who were legends. I was discharged and required a walking frame to get about but within weeks I pushed myself to start walking without it. I am five years in now and able to do most things, requiring help occasionally with strenuous tasks. But overall, I am back to my normal self.

Jump to this post

Oh my!! Praise GOD for your healings!! Thank you so much for sharing your story, it offers inspiration and hope!! I feel so overwhelmed with gratitude getting out of ICU. I am not sure of the next phase of this journey, but I am so grateful to continue life with my husband!!

REPLY
demooretucson | @demooretucson | May 11 2:57pm
In reply to @journey2025 "Hi Colleen, Praise GOD! We were downgraded out of ICU on 05/01/25. They took out his..." + (show)
@journey2025

Hi Colleen, Praise GOD! We were downgraded out of ICU on 05/01/25. They took out his tracheostomy on 05/08/25. Infection disease discontinued all antibiotics yesterday (has been taking them since 02/06/25). NG tube out today. Plan is to go to inpatient rehabilitation to help with all the deconditioning that has occurred. He still requires assistance with standing ~ but overall he is rapidly improving now. No words to describe this journey ~ but so grateful for GOD’s mercy!!! His vital organs have recovered ~ kidneys are good now, liver is good, heart is good, and lungs are good.

Jump to this post

Dear Journey2025 -- Your husband, you and your family are clearly real fighters! Very inspiring.

Dan

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