You are a wonderful sister. She is blessed to have you. Keeping you both in my thoughts for a good outcome.

Thank you so much - you all are the best.

Sending wishes for a successful procedure and recovery

Would ask not only how many procedures done in career, past year, but also survival rate.

@MDLN that is WONDERFUL news! this is such a big surgery! I would definitely check out Duke.

Update: My sister had her surgery on Wednesday and it all went well. Scheduled for six hours it only lasted three. The hospital and staff have been excellent and she is receiving good care. They had her sitting up in a chair on day two and she was able to eat her clear-ish diet on her own. No pathology yet - likely tomorrow.

So far, only minor issues with high sugar one day and oxygen levels in the past two days. All have been managed. She still has a long recovery road but it seems to be going much better than I feared. Hopefully, things will continue to progress smoothly. I still believe she will need more home care than she anticipates - we shall see. Thanks to everyone for talking me through this stressful time!

Thanks for the update - glad to hear everything is going well so far!

Great news! What a relief for you, and obviously your sister as well. Wishing your sister a continued, boring, uneventful and relatively short recovery.

Wonderful news! 🙌❣️

Thank you for the update Ruby, I‘ve been wondering, hoping that all went smoothly.

btw/ ’Ruby’ is one of my new favorite names.

How encouraging - let's hope she continues with an uneventful recovery. And she is fortunate to have suah a caring sister.

She has a half sister who I hear is very caring and good at caregiving. Unfortunately, she lives 5 states away and is not available to come stay until mid-July. So, she is stuck with me - the one who is lousy at caregiving!!

I am so happy to see a good update.

I'm so glad it went well!

I'm so glad to hear that the surgery went well. I hope for a continued smooth recovery. She is lucky to have you to care for her!

Great news, Ruby. Glad the procedure went well and hope her recovery continues to be uneventful. I’m sure you will be a huge help to your sister.

Glad the surgery went well. When my mother was in the hospital after cancer surgeries (4 of them), her Medicare paid for rehab stays if she was in the hospital for at least 3 days. They would pay for up to 100 days; 21 days at 100% and the remainder at I think 80% (she was never in there longer than 21 days, so i didn't pay attention to that %). She passed in 2014, so i don't know if rules have changed or not.

New Update: Well, my sister is still in the hospital (day 18). She has developed two of the common complications of this surgery - a pancreatic fistula (leak) and now an infection at her surgical site. No information as to her release but she will likely need to go to skilled nursing for wound care. Ugh.

Pathology was negative for cancer.

Just wanted to add this information as I painted a fairly rosy picture of her recovery. When they say this is a very challenging surgery and recovery - believe them.

Oh Rubyclaire, I am so sorry to hear about these new complications but very glad to hear the pathology report showed no cancer. I hope they resolve the fistula and infection quickly and that she is soon on a smoother path for recovery. Sending hugs to you!

I am so to hear anout the complications but am so glad the pathology showed NED. I hope you sister recovers fully.

thank you for the updates. I will keep healing thoughts for her that she continues to improve.

rubyclaire, glad to hear that your sister is recovering and no cancer. I think you mentioned last week that you had covid. Yes? Hope you are feeling better if you did.

Thank you - @happy2b…gw, yes I did have Covid and just tested negative this morning. Finally!

Also, just found out my sister will have surgery tomorrow to address the wound infection.

Glad you are better.

I’m happy you have recovered but am sorry there is need for another surgery for your sister ruby. Hope all goes well tomorrow.

Hoping this surgery for your sister will correct the problems.

Glad to know you are on the mend!

All the best for your sister's surgey & hope it resolves the infection situation.

My best wishes too. It is a difficult complication, and infection is also not unusual with a fistula. I hope that that they can treat both with minimally invasive procedures.

I also hope that she is able to do her breathing exercises, and moving/being moved while in bed, and getting to sit upright or out of bed if tolerated - important to prevent breathing complications.

A pancreatic leak is usually very painful, so aggressive pain control is important to help her to prevent that and other complications.

Thank you raee - unfortunately, they had to postpone the surgery until Tuesday due to hospital scheduling. She is not as mobile as she was a week ago so I am beginning to have concerns about that. They do get her into a chair and to the bathroom and are encouraging as much movement as she can manage.

She does not seem to be experiencing much pain and is maintaining a better attitude than I would at this point. She has two types of bacterial infections - one is possibly a drug resistant type. Ugh.

ANOTHER Update: My sister was transferred from the hospital to a short-term skilled nursing facility in late July to continue her recovery. She remains there today. She is still on a wound-vac, developed a couple of bed sores, a UTI, became dehydrated and has lost 15 more pounds (total of about 30 since surgery). What a mess. Add to that the fact that she has not been an eager PT/OT participant which has slowed her recovery. Her facility is discharing her next week (they have said she was not participating in her therapy last week and this week she is "medically cleared"). My sister met with the social worker and said she wanted to be dischared home - despite living alone, still in depends, and needing a walker and wheelchair. They will send her home with the wound vac and set her up with home health care to tend to the wound, etc.

Her family thinks this is a bad idea (much like not getting a second opinion for this surgery) but she is stubbornly insisting she will manage. We feel she would benefit from participating in PT/OT in her facility until she is stronger and more independent. However, she makes her own medical decisions so home she goes.

A recent thread by Oakley describes a stubborn DH and the results. I think this is what makes me crazy - the stubborn individual who leaves absolute chaos in their stubborn wake. I've had to take a step back for a couple of days to get some perspective.

I said this was an update but really is mostly a vent...sigh. Thanks -

Oh Rubyclaire, what a messy situation. I am sorry you have to sit back and watch the results of your sister's decisions. I can so understand that she wants to be HOME.. but of course, the best way to get home and on a path of wellness is to do the PT/OT. I hope that once in her own environment she will wake up and get some perspective. Sending love, strength and understanding to you!

I’m sorry @rubyclaire. I know this must be so hard. 🙁

Oh boy - that's not good. She clearly has a mind of her own that is unfortunately not good for her wellbeing. So sorry you are dealing with this.

Rubyclaire, I’m so sorry to hear this. Your sister’s experience closely mirrors one I saw in the 1990s, same discharge to nursing facility, weight loss, failure of wound vac to approximate closure and all the rest.

One’s blood levels of albumin and calcium are vitally important in the kind of healing your sister’s body is trying to do. I know it doesn’t sound like much, but a product called Juven. that is mixed with water or juice was a significant help in my husband’s recovery from multiple surgeries. It is not a drug, it’s a nutritional supplement, and it was prescribed in the hospital by a neurosurgeon who had clinical experience with studies predicting surgical outcomes by certain lab values — these among them. The Juven DH took was an important part of his healing, and he had a wound vac for three months. Wound vacs take a long time and they work, but only if one’s body can support the healing process. Juven is available everywhere, even on Amazon. She should check with her doctor before using anything, OTC products included!

Thank you. @kswl - I will certainly mention Juven to my sister and she can run it by her doctor. Good tip.

I do hope going home has given her the internal motivation to do more while she has daily PT support in the facility. I know I would rather be home, too.

Hugs, Ruby. :(

I am sorry to hear of this update. I will keep you and your sister in my thoughts.

I'm so sorry that your sister is struggling after making a decision that appears to be very problematic.

I am plagued with Stubborn family members so feel deep empathy for you. I will say this ; One of my sisters who is very stubborn cannot abide by being coddled so she really is best on her own with assistance.

Yes the madness in her wake brings tears to my eyes but she loses tons of weight when she is ever forced to endure constant coddling, in other words she doesn't heal and does albeit slowly when she gets home.

She is a complete reclusive introvert.

I don't think they make very good patients. Plus they cause one to lose their patience which means it is a necessary very good idea to take a break from them.

This! the stubborn individual who leaves absolute chaos in their stubborn wake.

I'm so sorry you are going through this. Your statement resonates with me more than I wish. There comes a time where people really should think both about what's best for them and what's best for the people that care for them.

Some might say that's selfish and one-sided, but usually thinking this way leads to a better result for all involved.

The best course of action is for the person who makes the decisions to live with the consequences.

I am sorry both you and your sister are going through this.

@Zalco/bring back Sophie! Unfortunately family and caregivers are never fully divorced from the consequences...

Divorced, probably not possible, detached can be done. I have been there.

There comes a time where people really should think both about what's best for them and what's best for the people that care for them.

Agree 100% @1929Spanish-GW. Our family was so grateful our DM worked collaboratively with us as she aged and her dementia progressed. As a side note, this sister provided very little help to her family in caring for her DM. I wonder if those are common traits in people.

Ruby, I’ve been wondering about you and your sister. I’m sorry that her recovery is taking so long.

I also understand her desire to be in her own home.

I don’t know about being released from a rehab center, but to be released from the hospital we (DH and I both released from hospitals too recently) had to sign paperwork stating that - 1. Stair climbing was not necessary to function at home. 2. there would be another adult home around the clock 3. agree to home PT and OT 4. probably more stuff I can’t remember.

We already had walk in showers, with pull down shower heads. Our handyman came immediately to install grab bars in the primary bathroom. This was an emotional step for me (I didn’t want old people stuff, even though we are old people) but having grab bars has been a godsend.

The one thing I needed, that my DH didn’t, was a raised toilet contraption. It, too, was necessary. I did a happy dance when I was able to sanitize and donate that.

Once she is home I hope she’ll take advantage of every home health professional available (insurance coverage) to her.

Good luck to her, you and team of caregivers.

As a side note, this sister provided very little help to her family in caring for her DM. I wonder if those are common traits in people.

From my experience, absolutely. This is part of the way people like that can focus on their needs and not the burden they place on others.

I am so sorry you are going through this. It is hard on a million levels.

Thank you so much @maddielee. I'm sorry you and your DH have learned about all of this through experience.

I am unware of her complete discharge plan right now. What I do know is that home health will be available for wound care. I do not know about PT/OT. As she lives alone, I'm not sure who (if anyone) will be available to stay with her. Her one son lives an hour away and her other about four hours. I am over two hours away. Hopefully, she is working on this. Our brother is going to be in her town tomorrow and will visit so perhaps there will be more information then.

Ruby, I’m so sorry you have all this on your shoulders. Even though she has other family, it appears she ismin denial about the who/what/when of her family being there for support she really needs. Medical support is one thing, but one always needs the support and advocacy family members can provide for an ill patient. I sincerely hope things will work out.

Thank you Outside - she does have the support of her family but she just frustrates the cr*p out of us at times.