My girls and I came home last night after spending Friday, Saturday and Sunday in Boston.
After several weeks of slow but gradual progress, Lina has had a setback over the past few days. The weekend medical team was concerned about lethargy and her not eating and so conducted many tests, scans and probes while we were there.
It’s now Monday afternoon and I just spoke by phone with Dr Armand. He said that there are 3 new areas of concern:
- Her mental condition has worsened considerably and they don’t know why. They were testing to see if she had a series of ‘mini-strokes’. Or it maybe it’s just overload from all she’s going through.
- Her gut has flared up causing pain, no appetite, vomiting. He said it’s most likely the aGVHD flaring up again. But it could also be new lymphoma. The PET scans ‘lit up’ in her gut region which they would for both lymphoma and aGVHD. They are going to do an endoscopy and a colonoscopy to see what’s going on and get biopsies.
- Her kidneys are damaged and they don’t know why and are doing various tests to see if the mix of drugs she’s on could be the culprit.
Dr Armand said that while none of these three developments is ‘catastrophic’ – in combination, and in her extremely weakened condition, she is again in ‘unstable condition’ and has the team ‘very worried’. She doesn’t need her ‘sitters’ now because she no longer has the strength to get out of bed.
Before this weekend’s setback, the hospital had told me that because she was eating better and because they were nearing the end of treatment for her viruses and the bacteria in her blood that I should expect our insurance company (Anthem/Blue Cross) to refuse to pay for anymore ‘acute care.’
Lina’s patient care coordinator at Brigham & Women’s said our options were to move her to a Anthem/Blue Cross eligible nursing home, or, to bring her home and hire our own nursing care. Insurance would cover only up to 100 days at a nursing home but pay nothing towards home care. The patient care coordinator contacted over 25 Anthem/Blue Cross eligible rehab hospitals all over New England but none of them will accept her because of her current mental deterioration and her need for 24/7 nursing care.
We’ve gone without Lina’s salary for these three years and now we’ve gone through all of our savings paying medical expenses not covered by the insurance — we can’t pay anything beyond what insurance will pay.
So… given those choices, when she improves we’ll bring her home and figure out someway to care for her.22 comments