Re: Hello from Houston, first post, sister with Cholangio

This discussion among mostly caregivers raises the following thought for me.

I guess each family dynamic is different.  My doctors have outlined treatment options, and I enjoy tremendous support and counsel from family members and friends.  So far, however, my treatment decisions have been 100% taken by me.  But there is always the possibility that I will need to rely more on others to take a more direct role in making treatment decisions for me in the future.  I don't look forward to that scenario.

One of the horrible aspects of cancer is it makes you feel a loss of control over your life.  Speaking as a patient, I would find it important that family members and caregivers not inadvertently manage things in a way that would make me feel like I have little say.  I know this is hard if a patient is very ill, but preserving some sense of control would be valuable to my own well-being should that day come.

Caregivers are heroes and make all the difference to patients, but at the same time as a patient it can be hard to speak up when you don't feel well and life is spinning out of control.  That was behind my earlier point about listening hard to patients for spoken and unspoken signals on treatment preferences.

Regards, Mary

Not a medical doctor!

Re: Hello from Houston, first post, sister with Cholangio

Dear Jonas, I am so very sorry to read about your wonderful Sister, Myrna. My husband, Teddy fought a good fight with CC for 5 years and then "relocated" 6 1/2 years ago. He may be out of sight but he is with me all the time, even approves that I am not alone anymore but with a wonderful companion as life is for the living.
Myrna is being treated at a good place but I have just a couple of comments. I am curious about the recent trip to the Hospital. Did they ever do a blood culture to make sure there was no blood infection which can happen so easily  with Biliary drains. Teddy used to get them often and it turned out the drain was clogged or infected. A simple IV of Levaquin took care of the problem.  But a blood culture is needed.
Please, try to look upon Hospice as an aid not an end. Most of them will start coming to homes a year out. They will not only help Myra in every way but will also help the family. I have recently retired from this Board but check in now and then as I cannot stay away and I had to answer your Post. It is so important that Myrna does not use up what little energy she has by being stressed and Hospice will help with that as well. They can only help. If you are not happy with them, of course you can cancel the service.
I am hoping for the very best for Myrna and your family. In the 6 years Teddy has been gone great strides have been made and we do have some hefty Miracles on our Board!

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Hello from Houston, first post, sister with Cholangio

Hi Lainy,

Thank you for your reply.  They are treating Myrna for a presumed infection, although all of her cultures have been negative thus far.  She has been on broad antibiotics since admission.  She has been stable, out of the ICU for the past 2 days, unfortunately her mental status has gotten pretty poor.  She has trouble recognizing us sometimes and pretty much just says "yeah" to most questions.   I'm hoping it's temporary, because all of her labs are actually getting much better, but supportive med is telling me that this sometimes just goes hand in hand with advanced cancer.  She is getting her biliary drain exchanged today and also going for a head CT to make sure she didn't have a spontaneous bleed while her platelets were very low.  Regarding hospice, the thought had certainly crossed my mind, but that is something I will need to discuss with my family, including Myrna hopefully if her confusion resolves.  She has a great supportive medicine team and the topic has been breached.  She is definitely at a low point right now, the lowest so far, and we are hoping that she can come back from this for at least a few more good months.     

Lainy wrote:

Dear Jonas, I am so very sorry to read about your wonderful Sister, Myrna. My husband, Teddy fought a good fight with CC for 5 years and then "relocated" 6 1/2 years ago. He may be out of sight but he is with me all the time, even approves that I am not alone anymore but with a wonderful companion as life is for the living.
Myrna is being treated at a good place but I have just a couple of comments. I am curious about the recent trip to the Hospital. Did they ever do a blood culture to make sure there was no blood infection which can happen so easily  with Biliary drains. Teddy used to get them often and it turned out the drain was clogged or infected. A simple IV of Levaquin took care of the problem.  But a blood culture is needed.
Please, try to look upon Hospice as an aid not an end. Most of them will start coming to homes a year out. They will not only help Myra in every way but will also help the family. I have recently retired from this Board but check in now and then as I cannot stay away and I had to answer your Post. It is so important that Myrna does not use up what little energy she has by being stressed and Hospice will help with that as well. They can only help. If you are not happy with them, of course you can cancel the service.
I am hoping for the very best for Myrna and your family. In the 6 years Teddy has been gone great strides have been made and we do have some hefty Miracles on our Board!

Re: Hello from Houston, first post, sister with Cholangio

Jonas, I am happy to read Myrna is having the drain changed today. These infections can really bring one down and I am hoping that with the drain change and all the meds kicking in that she starts to come around much better. My thoughts and prayers and everything good is sailing out to you and your family. Hang in and hang on CC is always a bumpy ride.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Hello from Houston, first post, sister with Cholangio

Jonas....good to hear that all test results came back as normal.  I wonder, have they checked her potassium level?  Just thinking out loud.  It may or may not provide some answers re: Myrna's occasional state of confusion. 

Thinking of you and sending a tidal wave of good wishes your way,

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: Hello from Houston, first post, sister with Cholangio

Jonas,

It sounds from your description that Myrna is receiving good care.  Prayers and best wishes that  her progress continues. 

Regards, Mary

Not a medical doctor!

Re: Hello from Houston, first post, sister with Cholangio

Hi Marion,

They are checking her potassium daily, it was initially very high due to her kidney  insufficiency, but has been normal/low for the past few days.  Her doctor isn't sure what's causing her encephalopathy, we are in a wait and see situation right now.  She doesn't seem to recognize any of us  at this point, it's truly heartbreaking.  I hope it's temporary and that she's still in there somewhere.   I wonder if anyone else has experienced this ? 

marions wrote:

Jonas....good to hear that all test results came back as normal.  I wonder, have they checked her potassium level?  Just thinking out loud.  It may or may not provide some answers re: Myrna's occasional state of confusion. 

Thinking of you and sending a tidal wave of good wishes your way,

Hugs
Marion

33 (edited by KarenD Mon, 10 Jul 2017 14:56:58)

Re: Hello from Houston, first post, sister with Cholangio

Jonas,

My heart is breaking for you and your family for all of the sadness and grief you must all be feeling.  I am so sorry that this is happening.  I hope that Myrna will improve over night after her stent exchange and that she is resting peacefully.

Is your family taking turns staying with Myrna over night?

Hugs,
Karen

This information is not intended nor implied to be a substitute for professional medical advice.  If you have questions or concerns, please consult your physician or health care provider.

Re: Hello from Houston, first post, sister with Cholangio

Hi Karen,

She is never alone and surrounded by family and friends at all times.  Even her best friends  from New York have been flying in almost every week  to  be with her.  She is truly loved by so many people.

KarenD wrote:

Jonas,

My heart is breaking for you and your family for all of the sadness and grief you must all be feeling.  I am so sorry that this is happening.  I hope that Myrna will improve over night after her stent exchange and that she is resting peacefully.

Is your family taking turns staying with Myrna over night?

Hugs,
Karen

Re: Hello from Houston, first post, sister with Cholangio

Myrna died early this morning  at the  hospital .she was the most kind, beautiful  and wonderful person  that I've ever known and she didn't deserve this. I don't think I'll ever hurt as bad as I do now.

Re: Hello from Houston, first post, sister with Cholangio

Jjgunny....please accept my most sincere condolences on the passing of your dearest sister.  There are no words to help ease you through this most difficult of times, but know that we are here for you, always.  Myrna's legacy is forever embedded in our hearts and on this site.

Hugs and love,

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: Hello from Houston, first post, sister with Cholangio

Dear Jonas, I am so very sorry and please accept my heartfelt condolences. I feel that Myrna will always be around you, just look for her in everything you see.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHING

Re: Hello from Houston, first post, sister with Cholangio

Jonas,
My deep condolences to your family.  You are an amazing brother for doing everything you can and Myrna's energy will always be present.  I'm glad she was with family.

Re: Hello from Houston, first post, sister with Cholangio

Jonas,

My thoughts are with you all, and I am deeply saddened that you have had to experience this. 

Thank you for sharing Myrna with us. 

Peace and blessings,
Karen

This information is not intended nor implied to be a substitute for professional medical advice.  If you have questions or concerns, please consult your physician or health care provider.

Re: Hello from Houston, first post, sister with Cholangio

Jonas,

Please accept my condolences and prayers.  Myrna was blessed to have such a devoted and caring family and circle of friends to bring comfort and support. 

Regards, Mary

Not a medical doctor!

Re: Hello from Houston, first post, sister with Cholangio

Dear Jonas,

I am so sorry for your loss.    It sounds as if Myrna was a wonderful person and meant a whole lot to you.  I am glad she was surrounded by the love and support of family and friends.  My thoughts are with you and all who knew and loved her at this sad and trying time.

Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Hello from Houston, first post, sister with Cholangio

Dear Jonas,

I am so very very sorry indeed to hear of the passing of your sister Myrna. Please accept my sincerest condolences. I so wish there was something that I could say right now that would help ease the pain that you feel but I know there are no words.  You did everything that you possibly could to help. Please know that we are all here for you and my thoughts right now are with you and your family.

Thinking of you all right now.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hello from Houston, first post, sister with Cholangio

Dear Jonas,
I am so sorry for the loss you and your family have experienced.  I am so glad Myrna was surrounded by her loved ones.
Victoria

Re: Hello from Houston, first post, sister with Cholangio

Dear Jonas,

I am so very sorry for the loss of your sister. Praying for peace, strength and comfort for you and your family.

Melinda

Re: Hello from Houston, first post, sister with Cholangio

My sympathy to you for the loss of your sister.   May you find comfort in good memories.

Jullie

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.