Sorry for such late updating here.
The good news... Despite all the medications Patrick has been on to suppress his immune system, with the help of some heavy duty antibiotics, Patrick was able to fight off the infection he had. In fact, the next day his fever was down and he was feeling much better. It was a very scary day for all of us knowing how serious the infections was. Thank God he got over it OK.
The bad news... Doctors have very little hope at this point that Patrick's new kidney will start to function like it should, and they will eventually have to take it out. But for now, his body needs to heal from what he has already been through. Devastating news and a hard day for all.
But a little more good news... Patrick will not lose his spot on the transplant waiting list and he should be able to get another transplant down the road. It will take some time to find out exactly what his antibody level is once he stabilizes a little more. Because of this, he cannot have another live donor transplant for at least 6 months, but then we can search for a donor again. It's important to know that Patrick's body did not reject his new kidney, but for reasons unknown, some of the kidney tissue died post-transplant and it became non-viable.
For now, Patrick goes back on dialysis. He was discharged from the hospital Monday night and is staying at the Ronald McDonald House for another two weeks while he goes back and forth to the U of M for monitoring, tests, labs and getting him set with a dialysis regimen again.
I don't think anyone expected the road to be so difficult and it's hard to know what to even say about all of this, but one thing is for sure, Patrick and his mom are strong and together they will make it through all of this crap (to put it nicely) to get to their well-deserved happy ending!
To our Snyder Family Hero... Not sure if you read this blog or not, but we all hope and pray you are feeling OK and recovering well. It's hard to imagine how difficult this all must be to you as well. We hope it helps you to know that we are eternally grateful for what you did... nothing will ever change that. We wish you many blessings in your life!
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.
Wednesday, June 8, 2011
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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.
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.
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.
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
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