Friday, April 8, 2011

Not much happening

It seems like when not much is happening around here I find it difficult to post anything.  We are getting ready for a visit to the Nephrologist (kidney doctor) on Wednesday.  I worry about these appointments as much as the cardiology appointments.  We have been told that Hope will need a kidney transplant someday and every time we go to the kidney doctor, I worry that he will find her in kidney failure.  I know the signs and I don't see them in Hope, but I worry that I won't catch something and it will go to far.  I am planning to meet with a few other kidney doctors this summer.  I am not a fan of them at all and would really like to find one that I feel comfortable.  It really is not an easy task because the doctor that made the decision that Hope was not a good candidate for the Norwood was a nephrologist and the most negative person I had ever met.  It seems like a pattern...these doctors are not positive people at all (at least the ones I have met).  I know she was born with crappy kidneys and neither of them work 100%, but they are still working and I don't know why the doctors can't focus on that instead of the negative all the time.  I often think I live in denial about her kidneys and in some ways I am sure I do.  She has a major heart defect...I think that is more important than the kidneys.  I don't want to focus on something that I don't know as much about...and I now know about the heart.  I have tried to learn about the kidneys, but they are even more confusing. 

For not much happening, this post has turned into a long ramble about my worries.  I guess I didn't realize how worried I have been about this appointment.  I will update more after the appointment because we are all enjoying the fact that there is not a lot to post about!


  1. Hugs and prayers for Ms. Hope... She is growing and is just the most beautiful little girl...


  2. I hope getting your worries out helped. It usually helps me. I hope you find a nephrologist that can make you feel comfortable and help you understand. It is so important to have doctors you trust. I will keep you all in my thoughts for the appointment.

  3. Sometimes you just need to ramble, vent or do whatever is necessary to let those feelings out. It helps!!