Katie Needs A Kidney

**Grandma2Katie** · 05-07-2009, 12:42 PM

Hi Everyone. Katie's Grandma here.

Katie was home for almost two weeks. On Monday, she came to the hospital for blood testing and was admitted. Her kidneys are not improving and the doctor's said today they are not expecting them to do any better.

On Friday, she will have a port inserted for dialysis. This will take up to 3 weeks to heal. She has been put on the waiting list for a kidney transplant. Three blood relatives have the same blood type, O. I have called the Diabetes Association, the Red Cross and the American Kidney Foundation today trying to find out if my diabetes would eliminate me as a donor. After going in circles for a while, no one could answer the question.

Anyone here ever been through this process?

Hope you are all doing well.

Cindy

**Sangye** · 05-07-2009, 01:22 PM

Oh man, Cindy, this is awful to hear. I'm so sorry Katie's kidney is not coming back online. There are others on here who have received kidney transplants, so you'll have plenty of excellent advice.

My gut feeling about you donating is that it's not a good idea. Diabetes is pretty hard on the kidneys-- allows protein through them. Protein is large and can do micro-damage if not major damage.

Also, since kidneys are a fatty filtration organ, they collect toxins over the years. So it's always better for a child to receive a young kidney, since they'll need it for a long time.

This is the holistic medical view on kidney transplants. I have no idea what the MDs would say about it.

Meanwhile, give that child a big hug from me. Please keep us updated. I know we've all got little Katie on our minds.

**RCOSSIO** · 05-07-2009, 01:57 PM

Cindy's

My thoughts and prayer...hopefully Katie will come through.

**KtheC** · 05-07-2009, 08:26 PM

Originally Posted by RCOSSIO

Cindy's

My thoughts and prayer...hopefully Katie will come through.

My thoughts as well.

**Jack** · 05-07-2009, 09:37 PM

Hi Cindy,
I had a transplant 19 years ago and it works better than most of my other bits! I was told at the time to expect it to last around 8 years, but a good match and improved medication have worked wonders.
There is a lot more to matching transplant organs than just blood group and the closer you can get, the better the result, so don't rush into this. Dialysis is not very pleasant, but it keeps you alive while a search for a good match is made although some people tolerate it better than others. I have to admit that I was quite unwell for 18 months although I was still able to go to work (I had a very understanding employer!).
For anyone contemplating donation, I can assure them that the one kidney remaining is plenty and you won't need to change your lifestyle.

**Grandma2Katie** · 05-08-2009, 01:32 PM

Thanks everyone for your responses. I will be at Brenner's Children's Hospital tomorrow. Katie is having the surgery to have the dialysis port inserted at 10:30 in the morning.

Jack, it sounds like your transplant has done very well for you. I just hope a match can be found quickly for Katie. I am wondering if they could use an older kidney even if it is for only a year or two until they could find a better match. I'm also worried about Wegener's attacking the new kidney. I know, I worry too much.

I saw her last Monday when she was getting an IV prednisone treatment. Her sweet little face is so swollen now. At least she was sitting up and visiting with a little friend she had made while at the hospital before. She has learned to read food labels for sodium content and knows how to equate that to serving size and daily allotment.

At least she can still have her treasured Star Burst candies and gummy bears!

I'll check in tomorrow.

Hugs and healing thoughts to all!

Cindy

**Jack** · 05-08-2009, 04:35 PM

Cindy
The drug treatment required to prevent rejection of the transplant kidney is almost identical to the treatment for Wegener's. But you are right, they will want to get her condition stabilised before risking a transplant.
Although kidney transplants are "Gee Whiz!" surgery, I found my op to be no big deal and I was fit and well within 10 days. Of course, it doesn't always go that well and it sometimes takes some messing about to get the new organ working properly.
I must say that I often offer up a thank you to my doner whoever he/she was.

**Grandma2Katie** · 05-10-2009, 05:06 PM

I must say I was very impressed with the doctors taking care of my sweet Katie. Each one of them came in and talked with her about her surgery and what they would be doing and why. Katie was so brave and tried so very hard not to cry but she was so frightened. Her mom and dad and I stayed with her right up until they took her in the operating room. The last we heard from her was a terrified scream. Ripped our hearts out.

She had a pretty good night. The staff kept her as comfortable as possible. I talked with Laura this evening. She is so down hearted. Katie is continuing to retain fluids and her kidneys are getting worse. Hopefully, the dialysis will start on Sunday. When Laura asked her if she was ready to go home, Katie said no; she didn't feel well enough to go home.

Sangye, you were right. The transplant doctors said no to anyone with diabetes so that rules me out. I pray they find a donor soon. She deserves to feel better for a change.

Hugs and healing thoughts to all,

Cindy

**Sangye** · 05-11-2009, 12:49 AM

It's so painful to read about a little kid going through all that.

Please tell Laura not to lose hope, no matter how awful it looks. Children's bodies are incredibly resilient--more than we can imagine, really. Right out of nowhere they can turn a corner and start improving. I've seen it many, many times with my own eyes-- kids, newborns, many on the brink of death that turned around within a day. I know many of them years later-- they're strong, healthy and vibrant, and carry surprisingly few physical or emotional scars. And, what results in permanent damage to us adults, often can heal in a child. Their bodies are literally programmed to grow, to heal and to change. It may help Laura to keep these images in her mind. Any time the fears arise, just butt them out of the way.

I'm sure you're all beyond overwhelmed and exhausted. Please take good care of yourself, and thank you so much for keeping us updated.