4 Comments So Far

  1. I think you have become,in a way, an advocate for a lot of people who have never had the idea of what to do next. And will now not be afraid to question or research things they dont completely understand. Anyone that reads this blog, whether they know you well or not, sees a strong individual who was not willing to just take what she and her family was told by medical professionals(no matter how well trusted) and be satisfied. You challenged things because you are caring, inquisitive, intelligent and want to understand all the things that are happening to your loved one with an explanation you and everyone else can understand.
    I once again applaud your STRENGTH through this whole situation. Your family is an inspiration to us all because of the support and love you have for each other. HUGS

  2. I would feel like you about this daunting situation with communication and decision-making. My goodness gracious! (Well, other exclamations come to mind, but I won’t write them here.) It’s a good thing to write about, in part because others, especially parents, would find solace and help in this post. Hopefully, it helped to write, sort it out, and vent your thoughts and feelings after going through this difficulty. Ana is blessed to have such excellent advocates, as parents, in you and Jim, and in her own strength, determination, and wonderful spirit.

    On this rainy day, I hope you can have a gift and a break of your own by watching a movie, writing, or poking into a great book and hanging out there, and especially in having sweet time with your girls. You wrote the other day of being consumed with Ana’s illness — which is more than understandable — so those moments and hours of joy are all the more precious!

  3. You nailed what I was trying to say exactly, Ulrike! I completely agree that it’s unsustainable to have a trained nurse/medical person acting as advocate, but I think it’s really an excellent suggestion to provide training to caregivers for things like post-transplant care. It’s not even care, really – it’s just knowing what to look for so I don’t miss anything potentially serious. My dentist actually suggested I get EMT certified, which I think I might do. (yes, I’m crazy)

  4. I have translated patient information materials related to other types of transplants and in them the authors stresses how crucial it is for the patient to have an advocate precisely because of what you describe. But for once I think the expensive and inefficient US health care system is not entirely to blame – the only way this could be different is if either the patient remained in the hospital under close medical observation or had a trained medical professional by her side at all times. I can’t imagine any system in which the latter would work – who would pay for that? So the solution is the advocate who keeps important information flowing between patient and medical experts. And you are doing great. Maybe you could suggest to the hospital that they look into providing more training opportunities for the advocates to make it easier.

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