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Double Lung and a Kidney transplant, followed by a series of strokes.
My 43-year-old daughter received two lungs and a kidney last February. A few days after the procedures, she had called me, walked the hall for a short bit, and then had a series of strokes. She was intubated for months, and eventually extubated to breath with a stoma instead. She is fairly lucid, but her ability to communicate is limited.
She will need to go to a long-term care facility and is not expected to live alone or at a private home. The kidney failed, btw, so she is on dialysis three time a week. Her condition is fragile, so I want to know if onsite dialysis is supported at LTC homes. She cannot walk now, or even sit up for very long. And this is 12 months after the strokes. To be transported to an off-site facility so often will seriously impact her well-being, due to other complications.
Is the National Kidney Foundation a resource about on-site dialysis? From all I can tell, everything she will receive depends on her insurance, not on her specific needs.
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@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
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3 ReactionsThank 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! 🙂
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