Double Lung and a Kidney transplant, followed by a series of strokes.

@deltabreeez Welcome to Mayo Clinic Connect. This is quite a situation to find yourself and your daughter in.

The question of on-site dialysis in a long term care facility is something depending on where you live. Here are some articles I have found:
From Home Dialysis Central: https://homedialysis.org/news-and-research/blog/540-options-for-nursing-home-dialysis
From DaVita Kidney Care: https://www.davita.com/treatment-options/dialysis/skilled-nursing-facility
From Fresenius Kidney Care: https://fmcna.com/patient-care/kidney-care/skilled-nursing-facilities-partnership/
From Medicare: https://www.cms.gov/medicare/provider-enrollment-and-certification/surveycertificationgeninfo/policy-and-memos-states/guidance-and-survey-process-reviewing-home-dialysis-services-nursing-home

You mention that "everything she will receive depends on her insurance". Are you able to get any answers from her insurance yourself? Do you have a long term care facility in mind that she will be set up in? If so, you could start there and ask what policies they have in place for dialysis.

I hope this helps you. Please let us know if there are more questions?
Ginger

Thank you so much for this information! She has had only MediCal for the 9 years she's been on dialysis in Los Angeles. But I retired so I could focus on her needs. I have applied for Medicare on her behalf through my own benefits, but this has been such a slow process. While hospitalized over the past year, my daughter has been fighting off infections, trying to relearn how to swallow, eat a chopped diet, and to sit up in a chair more often. She has also been treated by plastic surgeons for a stage four sacral wound. She was born with tuberous sclerosis and her right leg was enlarged at birth from lymphedema as well. During her late 30's her lungs were afflicted with LAM (Lymphangioleiomyomatosis) which is a devastating condition that results in cystic lung destruction.
We are exceedingly grateful for her new lungs; they are working well. I don't know where to start looking for a facility, the one I toured so far, in Burbank, CA was a residence that would have set her up in what looked like the dining room of the house. It was a rather sick joke, completely unreasonable. I had to tell the social workers in LA not to send anyone else to that place. Thank you so much, Ginger - I happened to run across your site while doing work for my Gerontology class. Even just writing about this has helped. I will begin researching the links you have so kindly provided! 🙂

On Friday my 44 year old daughter’s referred palliative care nurse made their first visit. Then a 2nd nurse visited yesterday.
They reported to the service’s doctor that my daughter “was suffering” and should be on hospice - and to stop dialysis. Then I was called and informed that the service would not provide any services until that decision was made.
All I had asked for was to make her more comfortable because the skilled nursing facility wasn’t keeping up with her pain and extreme itching of uremic pruritis.
She is lucid, has no intention of stopping dialysis - “Hold On” is tattooed on her arm.
She is a double lung transplant survivor and has a failed kidney transplant. She receives bedside dialysis five times a week, for as long as the nurses can keep her blood pressure at a safe level.
She’s been hospitalized twice since April of this year, for infections that may have started with her stage 4 sacral wound. This wound hasn’t fully healed for two years.
On top of everything, she suffered a stroke a few days after the transplants. So she has been bed-bound since then.
But she lives each day with hope, and as her POA, I cannot imagine approving that the dialysis be stopped.
Why can’t they just give her the comfort care I requested? It is covered by her insurance.
I don’t know if I can get a 2nd opinion from a different provider. I’m so sad.

@deltabreeez, you must be beside yourself with worry for your daughter and scared about making the right decisions. It also sounds like you have many more questions that need to be answered to be confident in making decisions with your daughter.

Let's focus on the statement "she lives everyday with hope." You want to realize her hope. And at the same time, you want to define hope to align with wishes, circumstances and reality.

As you know, palliative care is defined as comfort care with the main purpose of easing symptoms and reducing suffering. Did the palliative care nurses explain their statement that "she is suffering?" Is there no medication or intervention that could alleviate the pain and itching?

Is your daughter able to speak?

Hi, Ms. Colleen - thank you for responding to my post.
I do t think the nurses spent enough time with my daughter to make their conclusions.
Yes, my daughter can speak, in a limited capacity. She can read, also. She and I communicate daily by text, or she’ll send me a voice recording in which she will carefully say what she needs, like “can I have Kleenex”.
Then I’ll know to make a door-dash order for her for tissues, CeraVe anti-itch lotion, or even food sometimes.
I only wanted more specific attention to her needs because she wouldn’t be “suffering” if they would provide more care.
I live six hours away from her SNF and fly down there every 3 weeks. I think I need to find a palliative care service that doesn’t automatically jump to “hospice conclusions”.
Even speaking to her SNF nurse today, she said my daughter was doing well. She was as confused as I was about the hospice orders she saw. We aren’t even officially accepted yet by AYA Hospice. I’m going to revoke the paperwork I signed for the palliative care. It’s not feeling right.

@deltabreeez
I am so sorry for all that you and your daughter have been going through. Unfortunately, I don't have any answers to help you, but I hope that you can get the information and resources you need in order to make the best decisions. And, I agree with you that if something doesn't feel right to you, then don't do it. Don't let anyone pressure you or rush you into making any decisions. Please keep fighting for your daughter and for her best interests. You both are in my thoughts and prayers. 🙏🏼❤️