KIDNEY FOR EMMETT

KIDNEY FOR EMMETT

Emmett is 2 and was born with Acute Renal Failure (Kidney failure). He is in need of a kidney transplant. We are looking for a kidney donor blood type O! So here's the update everyone.. We just finished at sick kids with surgeon and specialist. The one kidney Emmett has is not growing still and his bladder and ureter are still dilated. So end of January Emmett will be having surgery to get a "mitrofanoff" which is a hole through his belly button that will need to be catheterize so many times a day. Also he might need a feeding tube so when he has transplant he's able to keep up with the food /fluid intake he might need. So all in all we were hoping for no surgery, however if this surgery can give him a few months before needing a transplant.  Than that's all that much longer for Emmett to get bigger and stronger for transplant.

Hi everyone I just wanted to update everyone on Emmett condition as a lot of you are asking.  As of right now Emmett is somewhat stable. We are going day by day and month by month watching his levels.

Emmett will most likely need surgery soon on his bladder to get it ready for the kidney transplant. We have started the steps for the transplant. Emmett has done his tests and we are now looking for a donor. Emmett is blood type O So he needs a donor with the same O type blood. it can be O positive or negative. I know some of you have expresses interests in being tested and helping if your able to.

To all of those amazing people who want to help or even try to see if there a match to help, please pm me as I have some information and steps you can take to start the process to see if you’re a match or even able to help.

Thank you so much to everyone for your prayers and support. We are so blessed to have such great support. We really appreciate it and hope we can continue to stay strong and get Emmett on a road to bring healthy and having a functioning kidney.

Website

https://www.youcaring.com/emmett-lambert-young-jennifer-lambert-470966#.VkuAWlXxDF4.facebook

KIDNEY FOR TEAGAN

Teagan is a vibrant 4 year old little girl who loves going to Junior Kindergarten, loves doing puzzles, loves to play sports and loves to dance. She is funny, sly, intelligent, and brave. Teagan is the strongest person I have ever met. But that’s easy to say, I'm her Mother.

 Teagan was born when I was only 24 weeks and 4 days into my pregnancy. Her birth story was by far different than the birth “plan” I had in place at the time. After numerous attempts at resuscitation after her birth, her father came in to say his last goodbyes. The moment he touched her, her stats quickly lit up like a Christmas tree! She survived.

 The next 72 hours were the hardest as Teagan developed Acute Oliguric Renal Failure and would not pass urine for the longest time. She finally did, two days after birth, but her tiny kidneys took a great big hit as a result.

 Teagan went on to spend 117 days in the Neonatal Intensive Care Unit (NICU) at Kingston General Hospital. She had a number of challenges during those 117 days but she always seemed to beat the odds no matter how far her tiny little body pushed them.

 Today, Teagan excels in life with family, friends and community. She does so despite her additional diagnoses of Cerebral Palsy and Hearing Loss.

 For the last 4 years, Teagan has been visiting her nephrologist on a monthly basis at the Children’s Hospital of Eastern Ontario (CHEO) and she endures numerous blood draws to monitor her kidney status. Being diagnosed with Stage 4 Chronic Kidney Disease, Teagan has only 16% kidney function which means her body is at high risk for developing high blood pressure, cardiac disease, and edema just to name a few.

 Basically put, a person cannot live without their kidneys. So, the treatment for this condition is to either do dialysis or have a kidney transplant. Teagan will need to start one of these treatments once she falls below 15% function. That day is coming very soon.

 Teagan will be placed on the Deceased Donor list as soon as her kidney function falls below 15% which will means she’ll have reached Stage 5 or End Stage Renal Failure. At this time, she will also be prepared to start dialysis treatments. In order to start dialysis, she will have to receive a surgery at CHEO to insert a dialysis catheter. Once this catheter heals and is ready to use, she will have to stay in hospital for as much as 3 months (but no less than one month) so that her doctors can ensure the right dose of dialysis and monitor her until they are a comfortable discharging her to receive dialysis treatments at home on a daily basis.

 This will be very taxing on our family. It will mean lost wages and we will have to find accommodations away from our home for those 3 months she will have to be at CHEO. We are asking for your support to pay for the travel costs that will most certainly tax our one income family. There will also be expenses involved in receiving a kidney transplant at Sick Kids Hospital in Toronto when that day finally arrives as well.

 We do not know how long she will have to wait for a deceased organ donation that will match her blood and tissue type. It could happen immediately upon being placed on the list or it could take as long at 8-12 months.

 Alternatively, a living donation has a better success rate and also provides the advantage of being able to plan for the transplant operation. It could even help Teagan avoid dialysis altogether.

 If you are interested in learning more about Living Kidney Donation please visit:

https://www.blood.ca/en/organs-tissues/living-kidney-donation

 If you are interested finding out what it would take to donate a kidney to Teagan, you may contact the Living Donor Program at the number below:

 Living Donor Program

 Toronto General Hospital

 Phone: 416-340-4577

 Please note that only those with an O+ blood type can donate to Teagan but there are many more other children who need donors as well.

 For more information on the differences between living and deceased donation visit:

http://www.phoenixchildrens.org/medical-specialties/kidney-transplants/types-kidney-donors

 Thank you so much for taking the time to read our story. Please consider donating but if you can't do that please share our story so that we can reach as many people as possible.

 Sincerely,

 The Champlin and O'Brien Family

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From the NKF:

A recent Avalere Health shows how some Exchange/Marketplace plans are shifting costs of immunosuppressive drugs to patients calling into question how those under age 65 whose Medicare coverage ends 36 months post-transplant will be able to afford their meds.

https://www.kidney.org/news/paying-through-nose-keep-kidney

Paying Through the Nose to Keep a Kidney

New York, NY – New data calls into question how transplant recipients will be able to pay for a lifetime of anti-rejection medications, according to the National Kidney Foundation (NKF).

Research from NKF on drug coverage in 2015 healthcare exchange plans found that plans are charging high cost-sharing for immunosuppressive medications, requiring patients to pay an average of 36 percent of the cost for transplant medications.  The data analysis was conducted by Avalere.[1] These higher rates are an indication that healthcare exchange plans are shifting immunosuppressive drug costs to patients. These medications are necessary for patients to prevent transplant rejection.

At the same time, recent data (.ppt) shared during last month’s Organ Procurement and Transplant Network (OPTN) Advisory Committee meeting shows an increase in transplants among younger adults from December 2014 to June 2015.

“We have to ask how patients, especially young transplant recipients, are going to manage the financial burden of maintaining their immunosuppression medications year after year,” said Tonya Saffer, Senior Health Policy Director for the National Kidney Foundation. “Financial burdens shouldn’t prevent someone from getting the medications they need to keep the gift of life.”

Medicare coverage for transplant patients expires 36 months post-transplant. The Affordable Care Act (ACA) has offered broad access to insurance, giving transplant recipients who are under age 65 and not disabled better options to gain insurance coverage after Medicare ends. However, patient cost-sharing for immunosuppressive drugs can be so high on the individual exchange plans that patients have difficulty paying for their medications.

While most silver exchange plans use flat copayments for generic immunosuppressive medication, for any given drug 19-32% of exchange plans are using coinsurance.  The average amount of patient coinsurance across generic and brand immunosuppressive drugs is 36% with three plans requiring coinsurance for immunosuppressive drugs up to 60%.  

The use of coinsurance typically results in patients paying more for their drugs. There is also a lack of transparency for the dollar amount they will have to pay to fill their prescriptions.

When coinsurance is used, the average patient cost-sharing across all silver exchange plans is 36% of immunosuppressive medications. The portion patients are being required to pay can easily meet the annual out-of-pocket maximum which, in 2015, was $6,600 for patients not receiving a cost-sharing subsidy.

“We don’t want to create a panic among transplant recipients, but we have to educate them and make sure they have a financial plan for their medications,” said Matthew Cooper, MD, Director of Kidney and Pancreas Transplantation at Medstar Georgetown Transplant Institute. “We’ve also seen many patients being switched to generic medications. While this may save money, we need to make sure insurance plans and patients aren’t doing this without consulting their transplant program. Sudden medication changes can affect the health of the patient and the viability of their transplant.”

In 2016, plans will be barred from placing nearly all immunosuppressive drugs on the highest cost-sharing tier after a rule was made by the U.S. Department of Health and Human Services. However, this action may not stop the trend of greater use of coinsurance and higher copayments for organ recipients and others who rely on medications to treat chronic conditions.

“These findings also underscore NKF’s long-standing position on extending Medicare’s coverage of immunosuppressive transplant medications,” Saffer said. “Providing coverage will improve patient safety, decrease the chance of organ rejection, and reduce the number of people who need to go back on dialysis if their transplants fail, which is a costly proposition for our healthcare system.”

The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease. For more information, visit www.kidney.org.

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[1] Avalere Health PlanScape®, a proprietary analysis of exchange plan features. This analysis is based on data collected by Managed Markets Insight & Technology, LLC.

Publication Date

Tuesday, December 15, 2015

OLIVIA’S FIGHT

LINK: https://www.facebook.com/oliviasfight/

We have had several messages sent to me asking about Olivia, I have put together an update....but it is a bit long, so please bear with me. Thank-you everyone for your kind messages.

Olivia’s diagnosis is unbelievable to understand. We have had a little bit of time to let all of the information sink in & learn how Olivia will be affected.

Originally it was thought that Olivia had Polycystic Kidney Disease (PKD). The first round of genetic testing sent to Germany could not confirm PKD. There were some symptoms that could not be explained, Olivia was so incredibly sick. Doctors felt that cystic kidneys were only a small part of Olivia’s disease, that there was a much bigger picture to her illness. Full genetic exome sequencing was then done on Olivia, mom & dad to try to help determine Olivia’s diagnosis. Blood work was sent off to a U.S. lab to be tested.

The results recently came back and Olivia has an extremely rare condition called, ‘Renal Hepatic Pancreatic Dysplasia Syndrome’, or Ivemark’s Syndrome. The NPHP3 gene was affected in Olivia’s kidney development. 8 cases worldwide have been documented, each case extremely different from the other. It was very disheartening to find out in research that many babies do not survive this disease past birth. Renal ‘Ciliopathy’ or cells did not develop normally in Olivia’s kidneys. Cysts developed in both kidneys, making function shut down & placing her into end stage renal failure. Cysts were also found on her liver. Right now Olivia’s liver is functioning, but it is very enlarged with cysts, cirrhosis & an abnormal lesion, which is consistently monitored to ensure that there is no cancer growth. Olivia will also be needing a liver transplant. We are unsure if the pancreas has been affected at this time, but it will be monitored closely. She has a high risk to develop diabetes, also seizures.

Olivia is a fighter, a champion, the bravest little girl! She has been on hemodialysis, peritoneal dialysis, through several blood transfusions & infusions to help keep her alive. She has also fought several peritonitis infections. Blood work is constantly needed to ensure all of her electrolytes are stable & toxins are clearing properly. Olivia is tube fed & we are always working on nutrition, physiotherapy & occupational therapy to gain strength that has been lost from being so sick.

With transplant, Olivia will be given the opportunity to thrive, grow & have a wonderful life! She is almost there…just a couple of kilograms to go & centimeters to grow. Olivia’s transplant assessment will be early in the New Year & hopefully listed for transplant shortly after. At least one of Olivia’s kidneys will be removed to make room for a new kidney. We are hoping mommy can be given the go ahead to be her kidney donor, or we will need to find a living donor kidney match. (Olivia is B+) If a dual liver/kidney transplant is needed, she more than likely will be placed on a deceased donor list, where she could be waiting for transplant for months, even years. The importance of registering to become an organ donor is so high. Thank-you to everyone who has followed Olivia on this incredible journey…we are so thankful for the support!

IN DANGER OF LOOSING YOUR ANTI-REJECTION MEDS FOR YOUR KIDNEY?

A television producer is working on a story about Medicare coverage for kidney transplants and immunosuppressive drugs. They are looking to report on the 36 month immunosuppressive coverage limit for kidney transplant patients below the age of 65. They are looking for a Medicare patient who is currently at risk of losing their transplant kidney because of a loss in coverage or a patient who has already lost their kidneys and had to go back on dialysis.

Do you know anyone who is/or has been in this position? If so, contact Jerome Bailey at jbailey@aakp.org or call 813-400-2394.

WHAT YOU CAN GIVE ON GIVING TUESDAY

Today is Giving Tuesday. What can you give that will help others? Let me make a suggestion for you. Share someone’s Kidney Page on Facebook and Twitter. Why?

 • The National Kidney Foundation tells us that out of 73 Million Americans, 1 out of 3 of us are at risk for kidney disease;

 • 26 Million Americans have Chronic Kidney Disease;

 • 1 in 9 American adults are estimated to have chronic kidney disease (CKD), although most don’t know;

 • 630,905 of us have irreversible kidney failure, requiring dialysis or a transplant to survive;

 • 450,602 of us are currently on dialysis in the US;

 • 88,638 of die every year from kidney failure;

 • Although there are 101, 603 of us on the kidney waiting list, only 15,416 us were transplanted in 2014;

 • 12 Americans die every day waiting on that list for a kidney.

 For Giving Tuesday, you can help a kidney/dialysis patient for free! Pick out your favorite kidney page and share it with your friends. You never know whose life you could save by such a simple act!

https://www.facebook.com/KidneyStories/?ref=hl