About this website...

The purpose of this website is to expand our search for a KIDNEY FOR PATRICK and to find a compatible donor so he can have the transplant he desperately needs. We hope to increase awareness about his condition and his need for a kidney and encourage you to help Patrick by considering becoming his donor and by spreading the word any way you can. For more information on Patrick, his condition and how he's doing, please visit Patrick's CaringBridge Page.


Monday, March 8, 2010

Dialysis... and still no donor.

I know we all had hoped that this long overdue update would bring good news and be different this time... but Patrick is still waiting for the right person to come along and be his compatible donor, and truly, his life-saving angel. Many have stepped up, showing their true spirit of giving and compassion, and we hope and pray many more will continue to do so, so we can find that special person that Patrick so desperately needs.

Surgery and Dialysis at the U of M...
Along with declining kidney function and all the nausea and sickness over the last year and a half, it's been an ongoing struggle to control Patrick's fluid retention, blood pressure and potassium. Too much and too high is very dangerous, so when Patrick woke up last Monday morning extremely swelled up in his lower extremities with a drastic weight increase, they went to the U of M to begin the process of starting dialysis. After a day of trying to get his BP and fluid retention under control, Patrick underwent surgery to put a tube in his abdomen for dialysis. Surgery went well and they began dialysis just hours later. The first night went well, aside from some discomfort for Patrick, but by the second night, some of the dialysis fluids started leaking and dialysis had to be stopped. They were then sent home so Patrick can heal from his surgery for a week before they go back to the U of M this Friday to start dialysis again. In the meantime, Patrick is on very strict diet and fluid restrictions and has to be closely monitored at home. Needless to say, Patrick and his mom were very happy to get out of the hospital and come home for the week.


Peritoneal Dialysis...
Patrick and his mom, Laura, have chosen to do Peritoneal Dialysis, which means that Patrick can be on dialysis at home. Dialysis will purify his blood and remove toxins, which is what his kidney should be doing, but is not. He will be hooked up for 10-12 hours every night and Laura will be going through special training to learn how to do this. Hopefully dialysis will help reduce some of the nausea and sickness Patrick's been feeling and allow him to have better days. Click here to learn more about Peritoneal Dialysis.

A Happy 16th Birthday...
Patrick celebrated his 16th birthday in February with a fun day of bowling and food with family and friends. Patrick was feeling pretty good that day and we all had a great time. It's so hard to believe that little Packy is 16 already... how the time flies!

Patrick's 3rd Birthday... 13 years ago...


and now...


Patrick and Mom


Patrick and his buddies


Expanding the search...
We are still trying to come up with ways to reach out to more people. We have done what we can to spread the word locally, but now we need to take our search to a new level and spread the word statewide and even nationally. We recently sent out packets with fliers, wristbands, etc. to friends and relatives hoping they will help spread the word in each of their communities. We will be sending out more packets in the near future, this time to Minnesota churches, and after that... who knows, maybe long shots like Oprah and Dr. Oz?? We're also in the process of setting up another billboard which will be displayed near St. Cloud with 20,000 plus cars going by per day. As always, we are very optimistic that our efforts will pay off and a donor for Patrick will be found. Please email us at snyder555@arvig.net if you'd like fliers to distribute in your area. We also have wristbands, bumper stickers and business cards.

On a more personal note... it's difficult for us to see what Patrick and his parents are going through and how his kidney failure has affected and changed their lives. Patrick is still unable to go to school and is missing out on so much at age 16. He has every right to feel like it's not fair, but yet at age 16, he's handled it all so well, without complaining and better than many adults in his situation would. We all just want to see Patrick get better and back to living like a typical kid again. More importantly, we want to keep him around to live a long and happy life. Please... help us make it happen... spread, spread, spread the word anyway you can think of AND if you haven't been tested yet and you're in good health, please consider giving Patrick the greatest gift of all... the gift of LIFE.

Patrick's Story

Patrick was born on February 24, 1994, with chronic kidney failure. He was in need of a kidney transplant, but doctors said he would have to wait until he was big enough to undergo this operation. As a baby, Patrick spent much time in and out of the hospital. Eventually Patrick’s parents were tested to be a donor for him, and thankfully, his mom was a match. When Patrick was 16 months old, he underwent a life-saving transplant and received his mom’s kidney.

This was truly the beginning of a new life for Patrick. Patrick was able to grow and play and have a pretty typical childhood. He took anti-rejection drugs every day, had monthly lab draws taken and followed a few simple rules to protect his kidney. He went to school and loved spending time with cousins and friends, playing with the neighborhood kids, having bonfires in the backyard, going to movies and playing video games. Life was good.

In August of 2008, Patrick’s lab draws began to show a change in his kidney function. This happened occasionally during times of illness, but his levels always bounced back to normal. This time it was different. His kidney function continued to decline and eventually there was no denying that Patrick’s kidney was failing and he would soon need another transplant. In October of 2008, doctors told Patrick’s mom that Patrick had only a 17% chance of finding a donor, due to a build up of antibodies in his blood, and that because he had built up antibodies to the kidney his mom had given him, he would likely not match with any other blood relatives either. This was heartbreaking news and we knew that finding a donor would be difficult. A month later, testing showed that Patrick had built up even more antibodies and they were then told that he now only had a 6% chance of finding a donor. Patrick’s mom was devastated.

Over the past two years, Patrick has been in and out of the hospital, through invasive treatments, blood transfusions, a biopsy, surgeries and serious complications. He is on high dosages of multiple medications. He has been closely monitored with weekly lab draws and it’s been an ongoing struggle keeping his blood pressure, cholesterol, potassium, hemoglobin, etc. in an acceptable range.

Patrick is in the 10th grade and should be attending high school with all his friends, but instead he is tutored at home. He is missing out on most of the normal things the other kids his age are doing and life as he knew it has basically come to a halt.

Patrick is now on dialysis at home for 12 hours every day.
Dialysis is hard on Patrick some days, but because Patrick no longer has remaining kidney function, it’s necessary. It’s been a blessing, however. Dialysis allows Patrick to feel better and is buying precious time to find a kidney.


Patrick Through the Years

TO BE TESTED TO BE A DONOR FOR PATRICK...

Contact:
Transplant Coordinator
University of Minnesota
1-800-328-5465 - Choose Option 1
or call
612-672-7272
give Patrick's full name and date of birth:
Patrick Sibert, 2/24/94
When you call, follow the automated prompts. If you get voice mail, just leave your name and number and say why you're calling, and she'll get back to you. Please be patient, it may take her a couple of days to call you back, but if you don't hear back from her, please try again. Once you've been tested, you will need to call for your results in 7-10 days. Please read THE Q&A below for more info on requirements of becoming a donor and being tested.

Common questions about getting tested to be a donor...

Do I have to have a certain blood type to be Patrick's donor?
Yes, you need to have a blood type of A or O to be a possible donor for Patrick. It doesn't matter if it's positive or negative, only if your type is A or O.

How do I find out of I am a match or not?
If you know your blood type you're one step ahead. But if you don't know your blood type, that's okay, they can find that out. the Transplant Coordinator at 1-800-328-5465 (seer her contact info above). She will ask you a few questions and if you're eligible she will send you a packet with information about being a donor. Once you receive your packet all you have to do is go to your local clinic and get some blood drawn. The paperwork and everything you need for this will be in your packet. It takes 7-10 days for the results. She will call you to let you know if you are a match.

What does it cost to find out?
There is no cost to you whatsoever to find out if you're a match. There is information on that in your packet.

What if I live in a different state?
It doesn't matter what state you live in, you can still be tested. Funds are being raised to help cover expenses, including any necessary travel expenses for the donor.

What about age?
You need to be at least 18 years or older to donate.

How healthy do I need to be?
The Transplant Coordinator will ask you some health related questions and determine if you are eligible to be a donor.

Will my own health be affected if I become a donor?
Studies show that people who donate their kidney are just as healthy as those who don't. There is an excellent news article in the Minneapolis Star Tribune about being a kidney donor. To read, click here.


Why is Patrick's chance of finding a donor less than anyone else waiting for a kidney?

Patrick is what is called "sensitized". This is because he has too many harmful antibodies built up in his body. Patrick underwent a series of treatments called Plasmapheresis, which were unsuccessful in removing the antibodies. To learn more, click here.

Patrick receiving Plasmapheresis treatments at the University of Minnesota