Monday, September 16, 2019


York County native shows off scars at DreamWalk Fashion Show

YORK

by: Kara Urland

Posted: Sep 16, 2019 / 03:26 AM EDT / Updated: Sep 16, 2019 / 03:37 AM EDT

NEW YORK (WHTM) – A York County native, who lives with life-threatening polycystic kidney disease, hit the runway in New York for the DreamWalk Fashion Show Sunday.

Valen Keffer stopped by our ABC27 studios before her debut at the body inclusive fashion show.

DreamWalk is the first-ever “body inclusive” fashion show of its kind. The focus isn’t on designers, but rather the inspiring individuals as they confidently strut their stuff on stage – and shatter beauty stereotypes in the process. They choose models based on the struggles they’ve overcome and their achievements in life.

We’ve shared Valen’s story over the years, she received a kidney transplant and last year she also had a liver transplant, while she raised awareness about PKD.

Keffer decided to design a dress that revealed her journey.

“I decided to share my story in a different way by designing the outfit to show my 60 inches of scars so I’m going to highlight them with glitter to share my story like I never have before and give hope to other people,” Keffer said.

Keffer’s family still lives in York County but she has since moved to California, while still raising awareness about PKD and organ donation.




Zeeland principal gives gift of life through kidney donation

POSTED 5:56 AM, SEPTEMBER 16, 2019, BY FOX 17 NEWS, UPDATED AT 12:36PM, SEPTEMBER 16, 2019

ZEELAND, Mich. — A selfless kidney donor is serving as an example for students in one community.

Laurie Poll is the principal of New Groningen Elementary in Zeeland and for the last 12 years, she has been doing mission work in Haiti and eventually became friends with the director of the school in Haiti.

Poll later found out he needed a kidney and soon learned she was a match. So, Laurie decided to help give her friend the gift of life by donating one of her kidney's to him.

"It`s just been such a blessing and I just pray that I can show my kids. We talk about impacting others here in a positive way because we believe that is as important as do you know the multiplication facts do you know how to read and write, you need to know how to serve others in this world," Poll said.

Poll is back to work after surgery and hopes to bring Joseph to Michigan to visit with her church next year.  Poll also plans on going back to Haiti next summer.


Thursday, August 29, 2019

Back To School: An Interview




School Days: An Interview






By Jim Myers, AAKP Board of Director and Ambassador



In honor of school days, we are writing today about 5-year-old Henry Whitacre and his mom, Emily. Henry received a kidney transplant at Riley's Children's Hospital in Indianapolis, Indiana on July 18th, 2018. We wanted to check in and see how Henry is doing with his first school experiences. Hopefully, we can give first time back-to-school kidney parents some helpful ideas as the school year starts.

Read the interview below.

We asked:

As a parent of a pediatric kidney kid, how are you preparing for the start of school?

Emily responded:

'We prepped for starting his first school year this summer. We talked to Henry a lot about going to school, and what it would be like. We talked A LOT about germs, and hand washing, and how important it is. We also toured several schools and talked openly with the staff to see what school might be a good fit for Henry and his needs. We started by having him evaluated in our local district to determine if he needed any special services through school (an IEP/504 plan). Henry also attended four separate therapies all summer long to help prepare him for the classroom. We talked to him about the ways that he might have some different “stuff” from kids in his class, and that it’s ok for them to ask questions."

What advice do you have for other parents who are preparing for back to school?

"The best advice I can give is to be open with the staff at the school and forge a good relationship! Provide education if they need it, and be an open book regarding your kiddos’ diagnoses. The more they know, the more they can help keep your kiddo healthy and in school! Also, don’t be afraid to ask questions or ask about resources! Kidney kiddos can qualify for services such as speech and occupational therapy through the school via a special needs plan. We are our kid’s best advocate, so don’t be afraid to push for special plans if you feel your child needs one!"

Did you meet with Henry's teachers beforehand?

"Yes! We were able to meet his teacher before the school year started, as well as his principle and the school nurse. Henry’s home health nurse is attending with him, so we were able to make a game plan and figure out everyone’s responsibilities before that chaotic first day. It was so helpful! Plus we felt even more comfortable about him going to school. "

How has he been adjusting to school?

"Henry loves school! He is attending every day for half day. There were some tears (from both of us!) on the first day; but by the second day he was just fine and now he doesn’t even like the weekends off! He is so curious about so much and his teacher works very well with him, she is so patient! "

Check out this photo of Henry on his back to school night. He looks so happy!

Thank you Emily and Henry!

https://aakp.org/school-days-an-interview/







Tuesday, August 6, 2019

Advocating with Alexis from the PKD Foundation

Thank you
for being my #pkdadvocacy partner today! Much appreciation to
for his time as we discussed PKD research funding through the DOD #CDMRP. We look forward to working with you on this and other issues important to the PKD community. #endpkd


Saturday, July 6, 2019

PREEMPTIVE KIDNEY TRANSPLANTS: WHY AREN'T THEY MORE POPULAR?

PREEMPTIVE KIDNEY TRANSPLANTS: WHY AREN'T THEY MORE POPULAR?

WHAT IS A PREEMPTIVE KIDNEY TRANSPLANT?

It is a transplant that takes place for a kidney patient, before starting dialysis. It usually takes place before your kidney function deteriorates to the point where you need dialysis. Between 30%-40% of all transplants are preemptive transplants. Preemptive transplants are considered to be the preferred method of transplants when compared to post-dialysis transplants, but in the U.S. only 20% of kidney transplants are preemptive. The purpose of this blog is to explore why they are not more popular. A preemptive transplant allows the patient to be part of the process and to be able to make their own decisions as it relates to care. As we will see, the benefits of preemptive kidney transplants, by far, outweigh post-dialysis transplants as well as going on dialysis itself. Preemptive transplant allow for surgery before the patient’s medical condition deteriorates and the surgery becomes more difficult and potentially dangerous.The Mayo Clinic cites several factors contributing to the lower use of preemptive transplant:
A shortage of donor kidneys;
Lack of access to transplant centers;
Low rates of physician referrals whose possible recipient candidates have a lower socio-economic status;
Lack of physician awareness of current guidelines


WHAT ARE THE BENEFITS AND RISKS OF A PREEMPTIVE TRANSPLANT?

A preemptive transplant has many benefits, including:
There is less risk your body will reject the new kidney;
The recipient will likely live longer and have a better quality of life;
Avoiding the risks associated with dialysis;
Avoiding the dietary restrictions and health complications that come with dialysis.
Lower costs comparing the costs of transplant per person, per year to dialysis
Ability to return to the workforce and provide for family
Of special note, preemptive transplants are especially beneficial for children and adolescents in kidney failure.

The risks of a preemptive transplant include:
Early exposure to the normal risks of surgery;
Potentially wasting some native kidney function


WHAT ARE THE RISKS OF DIALYSIS?
Heart Disease;
Bone Disease;
High Blood Pressure;
Nerve Damage;
Infection;
Cholesterol Problems;
Poor Nutrition;
Depression;
Decreased Life Span of a Future Transplanted Kidney.

SO, WHAT’S THE HOLD UP?

As we have seen there are both medical and economic advantages to preemptive transplants. Preemptive transplants lead to improved patient and graft survival. Cost savings are accomplished with preemptive transplants as well. Medicare estimates their annual cost for dialysis per patient is $88,000, where the annual cost per patient for a kidney transplant is $34,000.
Yet, only 1/3 of all living donor transplants in the U.S. are preemptive transplants. This has been the consistent case for the last 15 years.
There are 2 factors that are cited for this delay in the acceptance of preemptive transplants:
The lack of timely referrals of kidney patients who are candidates for transplants from referring physicians;
The delay in completing the living donor assessments.
Timely referrals do not occur because of a lack of knowledge in certain regions of the country based on socioeconomic status. In other words, in the poorer, more uneducated areas of the country, these referrals are not happening! The richer and more educated the area, the more likely the potential recipient will be advised he/she is a good candidate for a preemptive transplant. To resolve these issues, transplant programs need to advise and educate patients and referring physicians about the benefits of preemptive transplants as well as their availability.

The time to complete living donor assessments are taking too long. A mean of 10.6 months to complete that assessment has led to many recipient candidates ending up on dialysis before they can be transplanted.
This delay has been caused by:
The self-referral by the potential recipient of her/himself to a transplant center opposed to a more organized physician referral;
Donor candidates put ‘on hold’ if the recipient eval is complicated as opposed to going forward and perhaps motivating the recipient candidate to act;
Donor candidates are intentionally slowed down due to the issue of informed consent coupled with the requirement of a complete understanding of what will occur and all risks;
Donor candidates are subject to a ‘cooling off period’ and the opportunity to reconsider to avoid the transplant center’s appearance of coercing or pressuring the donor to donate.

The fix for these issues is to better educate on the true nature of preemptive transplants and donor candidates. This should lead to more timely referrals of recipient candidates and better knowledge of the options for transplants and the fact that a preemptive transplant may be available as opposed to dialysis first, then kidney transplant to follow.
Donor evaluations should take a matter of weeks as opposed to a period of months. Most potential donor have made a personal and moral commitment to the potential recipient to donate. A deliberate, unnecessary delay only leads to donor frustration. Expedited referrals and proper education on the issue should lead to more frequent and healthy preemptive transplants.

THE BOTTOM LINE

Preemptive transplants are the best option for patients whose kidney disease is progressing to kidney failure. The Mayo Clinic recommends discussing kidney transplantation with your doctors before your kidneys fail. The bottom line is this: Preemptive kidney transplantation recipients have a greater chance of survival and a better quality of life than post-dialysis recipients do.