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Old Sun Nov 26, 2017, 01:47 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 587

Having a caregiver lined up post-transplant is considered by many centers to be necessary before they will even consider doing a transplant. There are some insurance companies that provide some in-home care and rehabilitation services, not everybody has these benefits.

The challenge post-transplant is that you don't necessarily need 24 hour care, but you might. your condition can change in a couple of hours due to low blood counts, risk of infection, being immuno-compromised, and having gone through a pretty rough process.

In my case, I did remarkably well for the first six months, then had about 1 year of continuous problems where I was not fully capable of getting out of bed somedays because i felt so weak, getting to the doctor, as it was not safe to drive, and feeding myself, as I was not hungry and did not want to eat. The most common complication called graft-versus-host disease was called chronic wasting disease because of this last part.

I think that your friend needs to check out the following:

1. What kind of in-home care does her insurance company provide
2. does the hospital have any assisted living/near campus facility that the patient can stay in.
3. Does the hospital have any programs that the patient can apply to if the first items are not available. There are many community resources that may be able to help, and the hospital usually has a list of potential assistance.

I wish your friend best of luck in this process as the transplant is difficult enough without having close social support/family to help.

MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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