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Grandma2Katie
05-07-2009, 11:42 AM
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, 12:22 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, 12:57 PM
Cindy's

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

KtheC
05-07-2009, 07:26 PM
Cindy's

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

My thoughts as well.

Jack
05-07-2009, 08:37 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, 12:32 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, 03:35 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, 04:06 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
05-10-2009, 11:49 PM
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.

Grandma2Katie
05-11-2009, 05:23 AM
Thank you Sangye. We are all trying to hold on.

Cindy

Cindy M
05-12-2009, 09:43 AM
So sorry to hear about Katie. My thoughts and prayers are with you and her.

Grandma2Katie
05-12-2009, 11:47 AM
Katie began her dialysis today. She sounded very upbeat when I spoke with her today. I get to go stay with her on Wednesday and we will be reading Anne of Green Gables. On the whole, I'd say she is doing better than any of the adults.

She will have another lengthy stay in the hospital; at least another two weeks. It should give her mom and dad plenty of time to learn about how the dialysis works and the proper way to do it. Since Katie is having peritoneal dialysis, she will be able to have it at night while she is sleeping.

At least we had a bit of happier news. She is feeling much better since her surgery and looking forward to the dialysis.

Hugs and healing thoughts,

Cindy

Sangye
05-12-2009, 12:51 PM
YAY!!! That's great news, considering. Hope she has sparkling clean kidneys really soon.

Jack
05-12-2009, 03:45 PM
Hi Cindy,
I was on CAPD too. Katie is probably on a machine at the moment, but later this may be switched to manual exchanges. I was on 4 per day and each one takes around 30 - 40 minutes. The regime may be different with a child though. Hope she gets on well with it. On the whole it was not too bad, but could cause twinges now and then during an exchange. It also had an odd effect of causing aches in my sholders, there is some sort of nerve interaction going on between these areas. Worst thing was the restricted diet! I'm a vegetarian and it ruled out most of what I would normaly be eating.

For anyone interested in the method, it is described quite well here - http://www.renalpatients.co.uk/capd.htm

Grandma2Katie
05-13-2009, 08:30 AM
Katie was on the dialysis machine for 14 long hours yesterday. Since her surgery isn't healed, it was very uncomfortable during the intake and draining part of the process. However, her blood levels came down and that is what they are trying to do. Her dwell time is about an hour so she didn't rest very well last night. I'm sure that will improve with time.

Next week, her folks will be in training sessions on how to work the dialysis machine. I hope they will teach me too.

Tomorrow I'm off the hospital to stay with my Katie-did. I'm looking forward to my visit and I hope she is feeling better still by then.

Thanks all!! Hugs and healing thoughts to everyone.

Cindy

Sangye
05-13-2009, 08:52 AM
Good luck, Cindy. Hugs to wee Katie from a bunch of strangers!

jola57
05-13-2009, 09:01 AM
Our best wishes for Katie kins

Grandma2Katie
05-13-2009, 11:15 AM
Thanks Everyone!!

:):):):)

Grandma Cindy

Doug
05-13-2009, 01:34 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.

Yes. When I was in University Hospital-Denver, I was, in fact, in isolation in the transplant ward, though, ultimately, I needed no transplant. (p.s. You know what I'm doing for Katie and her family.)

Doug
05-13-2009, 01:37 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.
I was in the transplant ward at the University Hospital-Denver when I reached the point where dialysis and plasma pheresis were necessary. Though I didn't need to have a transplant, I was close.

(This site is acting weird for me today and yesterday- I haven't received notice of new comments either. I must contact Andrew!)

Grandma2Katie
05-14-2009, 04:27 PM
Good news! Katie has had 3 dialysis treatments and already she is looking much better. Her fluid retention has lessened dramatically.

Tomorrow, she and her dad have a day pass. She's looking forward to going out to the mall to have her hair done and her toe nails painted. I suggested purple with green polka dots but said she didn't really have to choose those colors. No dialysis tomorrow. Should be a good day!!

Hugs and healing thoughts to everyone,

Grandma Cindy

Sangye
05-14-2009, 11:11 PM
Hot-diggety, that's such good news. :)

She could get, um, little rabbits on each nail.... (What was that? The sound of tomatoes whizzing by my ears? :eek:)

Doug
05-15-2009, 04:23 AM
Rabbits, of course, but the soft, fluffy kind! Great news, Cindy, and hugs and healing right back at you and your family! :):):):)

jola57
05-19-2009, 09:14 AM
No tomatos this time too happy for Katie. Just what a girl needs - her hair and nails done:D:D

Cindy M
05-21-2009, 05:14 PM
What great news. I bet she had a great time with her dad. Nothing like getting your nails done and being at the mall.

Macculloch
05-22-2009, 03:32 PM
I told my grandma about your granddaughter...and she and her bible group will be praying for you, and so will I :)