I was so hopeful that with the advent of a new year, things would begin to change for my daughter. That hope was for naught, it appears. Nothing has changed. All we get is more of the same. Nothing new is good, but nothing changed is frustrating.
Carly has gone back to doing clinic dialysis. She like the clinic, she likes the staff, she feels they have her best interests in mind. She is still not getting much in the way of care from her nephrologist, as a matter of fact, he seems to refuse to talk with her, choosing to have is nurse, David, act as go between. He has not given her any referral to see a new nephrologist, as he agreed to do prior to putting her in the hospital the day before Christmas for something that could have waited until after the holiday.
Every day there is some new frustration she has to deal with. Yesterday, she had a bleed and we spent the morning at the ER because her hepatologist sent her. Luckily for her, she was in better shape than they thought and she was sent home. She felt so happy that she did not get admitted, again! We told the ER doctor that we thought he had just given us a really nice present and he agreed.
Today another problem to be dealt with. She take a prescription that is to prevent hepatic encephalopathy, which is a common occurrence for liver failure patients. It happens when her blood gets a big build-up of toxins due to ineffective treatment by her liver and the symptoms are pretty scary. She will begin to fall all the time, she will run into walls, she becomes confused and anxious, and she loses touch with reality if it gets bad enough. That said, she went to get the refill and the pharmacy said her insurance had denied payment and her cost would be $600! That is for one month.
So she calls her insurance provider, and after many minutes on hold, speaks to a very nice lady who says her policy has been cancelled and she cannot find out why. So we wait while she investigates. The lady comes back online and says “someone mistakenly cancelled your policy” and she would get busy re-instating it. In the meantime, Carly is without her medicine now for two days. We are hopeful that by the end of dialysis today this will all be cleared up and we can go pick up her prescription for only $300.
It is just always something and Carly doesn’t always have the stamina or the energy to deal with things. It is ridiculous that the patient is the one who has to monitor and manage her own care because no one else cares or is willing to do it. She needs someone to be driving this bus of hers called End Stage Liver Disease and ESRD. She has doctors who each monitor their own system or wheel of the bus, but no one is coordinating and communicating between the different doctors. This is my main frustration as a nurse and the patient’s mother. I would do it, but HIPPA prevents me from access since I am not a caregiver.
Anyway, even though nothing has changed, we are expecting 2017 to be the year she gets her transplants and we are hoping for some action soon.