Please Note

I am not a medical professional. I do not have any medical training. I am the mother of a little girl who has been diagnosed with Aniridia, Wilms Tumor, and Kidney Failure. I am writing about my experiences. I am not always going to be accurate with details, but I try to be as accurate as possible. Please do not use this information to diagnose or treat yourself or anyone else. Please consult with a trained medical professional for any treatment or diagnosis.

Search This Blog

Sunday, August 26, 2012

Lots of Waiting...

We've been doing a lot of waiting, and we have a lot more to do.  God has really been blessing our family with an abundance of patience.  It is getting harder, though.  We are ready to put some of this behind us, and live a "somewhat normal" life for a while!

Piper has officially been cancer free for over a year now.  She has her official scan on September 5th, but her last chemo was on August 12th, 2011.  The doctors have been telling us all along that she needs to be cancer free for 1 full year before she can be eligible for a new kidney.  There is, however, one surgeon who suddenly isn't so comfortable with this.  He feels she should wait for 2 years cancer free.  I don't know anyone (her nephrologist,, other surgeons, her oncologist) that believes this, so tomorrow (8/27) there is another meeting to discuss.  Please pray that God will work to change his mind!

I have been going through the tests so I can be approved as Piper's living kidney donor.  I have passed all of the blood tests.  We are the same blood type, the cross match was good, and my blood counts are all great.  I have passed the chest x-ray and EKG.  I have a good heart!  I passed the renal ultrasound and the CT.  All of my organs look good, and I have 2 kidneys.  (Apparently a percentage of people are born each year with only 1 kidney, and some never know it.  They only find out if scans are done.  Interesting .....)  It is a good feeling to know that I am overall in good health!  ...............  However, about 2 weeks ago, we ran into a little hiccup.

I woke up at 3am, and I was in PAIN!  I thought I was having a muscle spasm in my back, but it grew increasingly worse.  I finally decided to go to the ER and find out what was going on.  I have never been in so much pain in my life.  The only thing comparable was childbirth.  Ugh...  I thought for sure that I had appendicitis.  I was wrong.  I had a kidney stone.  That is not what you want to hear when you're trying to be a living kidney donor.  Fortunately, it was small, and it passed without my even knowing it.  I just stopped feeling the pain, and I guess it was done...  This does not automatically rule me out as being a donor, though!!

The team at UNC has agreed that I need one more test.  This will be the test that tells if I can donate or not.  If the test proves that I had the kidney stone because of a hereditary condition, then they will probably reject my kidney.  They would be afraid of my getting additional stones in the future.  If the test shows that I do not have this hereditary issue, then they should approve me as being the donor!  We won't know the results of this test for a couple of weeks.  Prayers are much appreciated.  I am feeling a little anxious about this one.

If I am not approved as the donor, she will go on the waiting list to receive a kidney.  By the way, if you're not an "organ donor", please consider changing this.  There are so many organs that could be shared.  On average over 2 million deaths occur in the US each year.  There are over 100,000 people on organ waiting lists.  About 18 people will die every day waiting for an organ.  1 organ donor can save up to 8 lives!!!  Interesting, but really sad facts.  Click here to register as an organ donor.

Piper - She is doing amazing!  She has started to eat more, and she's even eating some textures and swallowing them!!!  She is running, jumping, climbing and doing somersaults.  We can't hold her down!  She is saying a lot of words now, and she is developing quite a sense of humor!  We couldn't be happier with her improvements!!

So, now we wait a little longer.  The results will all be in soon, and we'll have a better idea of what our fall/winter will look like.  No matter what the results are, we know that God has this in his hands.  We appreciate any and all prayers for Piper and our family.  She is such an amazing little girl!