We received a call last week from the hospital live donor coordinator.............My wife's insurance will not pay for a live donor transplant, so we are back to the UNOS waiting list. From what I understand the reason for the rejection is due to the hospital not having the type of accreditation they require for live donor transplants. We have just accepted the fact that everything happens for a reason, and this may be for the best. My wife has expressed relief, as she now says that she has really been worried that if something happened to her grand-daughter, she could never live with herself.
In the past year her MELD score has gone from 14 to 18, to 15 and is now 16, however her liver dr says this is not uncommon for patients suffering from ESLD. Her health fluctuates from a week of feeling pretty good to a week or two of feeling horrible, extreme fatigue, nausea, itching, etc. Lately her sleep patterns have just been crazy, as unlike most liver patients, she cant sleep day or night. Her liver doctor (reluctantly for fear of causing HE) authorized her PC Dr to prescribe 1mg of ativan at bedtime to help relax her so that she can get to sleep. This seems to be working, as she has done well for the past few nights, without any HE.
Her itching usually lasts for several nights at a time and always begins at bedtime. She tried two different prescriptions, with little or no relief from either. An old high school friend who is also suffering from liver disease suggested we try "Gold Bond" powder. I bought some, and low and behold, it stops the itching immediately. It's hard to believe that she has suffered for so many nights when such a cheap solution was readily available.
Well better get back to a home project I am working on........best wishes to each of you.
Charlie