Tuesday, March 29, 2022

PKDF ACN VIDEO FINAL

Join us on April 27 for Virtual Advocacy Day! Let's advocate together and urge lawmakers to support funding for PKD research and the passage of the Living Donor Protection Act

https://t.co/HiKK1BIRZo https://t.co/r472jeoQkI

From the PKDF ACN VIDEO

https://twitter.com/i/status/1508526518036832267

Saturday, March 26, 2022

You can join me on April 27th for the @pkdfoundation’s Virtual Advocacy Day to ask Congress to pass legislation on behalf of PKD patients and researchers nationwide.
Learn more and register for this free, virtual event today: http://ow.ly/QFgc50Im4n1

Tuesday, March 22, 2022

Join The PKDF ACN FOR ADVOCACY DAY

Conversation

Jim Myers

@kidneystories

As a @pkdfoundation
 Advocacy Champion, I’ll be participating in PKDF’s Virtual Advocacy Day on 4/27 to urge Congress to expand #PKD federal research funding, protect living organ donors, and more! 

Register now to join the mission to #EndPKD:

Saturday, March 19, 2022

Dr Jenna Henderson Broadcast

Missed the Dr Jenna Henderson Broadcast? Catch the Instant Replay Here!

https://m.facebook.com/story.php?story_fbid=1331190890733301&id=100043440381744

Friday, March 18, 2022

Video for the PKDF ACN

Hello Everyone, my name is Jim Myers and I am a PKD Champion from Indiana. I have had PKD for over 41 years and I have lost 5 members of my family to PKD including my Dad. Advocacy is important to me because I do not want others to suffer & I know that by advocating for funding to help cure PKD, we can all help. Join me and other PKD ers on 4/27 for the PKDF's Virtual Advocacy Day where we tell Congress how they can help!

I hope you’ll support our work by subscribing to the Foundation’s Advocacy Alerts. By subscribing, you’ll receive updates regarding what’s happening in Congress and notifications for when you can join us in speaking up for the community. As a Champion, I’m happy to answer any questions you may have!

We are looking for 10K PKD Advocates to make our Members of Congress Aware of PKD Issues!

You can sign up here: https://p2a.co/rpqRAYS

#EndPKD. #PKDF ACN

Thursday, March 17, 2022

Draft Video PKDF ACN

Video for the PKDF ACN

The Secret is Out! The PKDF Through It's Advocacy Champions Network is Virtually Going to Washington DC to Advocate For All Polycystic Kidney Disease Patients on Issues Important to All PKD Patients. Watch This Space for More Information!

Sunday, March 13, 2022

NEW BLOG: TOM OTTMAN KIDNEY TRANSPLANT WARRIOR AND ORGAN DONATION ADVOCATE.

NEW BLOG: TOM OTTMAN KIDNEY TRANSPLANT WARRIOR AND ORGAN DONATION ADVOCATE.

By Jim Myers

Introduction
I recently did a Broadcast on Kidney Stories 2, with Kidney Transplant Warrior and Organ Donation Advocate, Tom Ottman. https://fb.watch/bJZDXE_NUc/

Tom And FSGS
In 1997, Tom was diagnosed with FSGS The first hint of ESRD came from a routine annual physical. Tom managed to avoid dialysis for the next 16 years before his first of 2 preemptive kidney transplants by eating a sensible kidney friendly diet.

https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693#:~:text=Focal%20segmental%20glomerulosclerosis%20(FSGS)%20is,by%20a%20variety%20of%20conditions;

https://www.kidney.org/atoz/content/focal;

https://my.clevelandclinic.org/health/diseases/21149-focal-segmental-glomerulosclerosis-fsgs.

In 2011, he was put on the kidney transplant list and after 2.5 years he was transplanted. He did face many obstacles to transplant including 6 calls as an alternate before getting transplanted, including one admission and discharge became the donor kidney was not "ideal."

Tom's Kidney Transplant
On November 17th, 2013, he received his first kidney transplant at Atrium Health in North Carolina. He faced many challenges after his transplant including proactive testing, reactive procedures and medication adjustments.

https://atriumhealth.org/medical-services/specialty-care/transplant/kidney-pancreas-transplant

First Kidney Transplant Failed
This first kidney transplant lasted 7 years, as the kidney slowly lost function over time due to Transplant Glomerulopathy. Once his GET hit 20%, he was referred back to the transplant center for an evaluation for a 2d kidney transplant.

On The Inactive List
In March of 2000, he was once again approved for the transplant list, but he was placed on inactive status due to pulmonary hypertension. His doctors suggested dialysis to remove the excess fluid causing the high blood pressure in his heart and arteries in order to get on the active list, but Tom refused. With a healthier diet, he lost 20 pounds, alleviating the PH, and placing him after retesting on the active, ready to be transplanted list.

https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/symptoms-causes/syc-20350697

Back On The Active List, Tom Gets THE CALL!
After 6 months, he got THE CALL in September of 2020. Tom accepted a high risk Hepatitis C antibody kidney, because Hep C is now curable. To date he has had no signs of Hep C. He had his 2d preemptive kidney transplant on September 17th, 2020.

https://www.kidneyfund.org/all-about-kidneys/other-kidney-problems/hepatitis-c/hepatitis-c-and-kidney-transplants;

https://kidney360.asnjournals.org/content/1/2/127;

https://www.medicalnewstoday.com/articles/hepatitis-c-kidney-transplant

Post-Transplant Challenges
Tom has faced some challenges since his 2d kidney transplant. His labs showed signs of kidney rejection in November of 2000 and at the same time they showed the presence of the BK Virus. It is changing because treatment for rejection requires you are highly immunosuppressive while treatment for the BK Virus requires you not to be immunosuppressive at all so the body can fight it off.

Kidney Rejection: https://my.clevelandclinic.org/health/articles/21134-kidney-transplant-rejection;

https://cjasn.asnjournals.org/content/15/3/430;

https://pubmed.ncbi.nlm.nih.gov/32066593/.

Treatment for the BK Virus:
https://cjasn.asnjournals.org/content/2/Supplement_1/S36#:~:text=of%20BKV%20nephropathy-,Treatment,55%2C85%E2%80%9387);

https://pubmed.ncbi.nlm.nih.gov/16626039/;

https://www.kidney.org/atoz/content/bk-virus-what-transplant-patients-need-know

After 8 infusions of Thymoglobulin and Solu-Medrol Steroid, the rejection episode seems to be over. 50+ Infusions of Cidofovir and 12 infusions of Privigen in IVIg from, a human blood product containing antibody, Tom may have beaten the BK Virus as well. He has also suffered from a dropped foot.

Tom The Advocate
Tom has also been a very active kidney advocate, his activities are listed below He is particularly known for his comprehensive advice to Kidney Transplant List Candidates.

Advice For Kidney Transplant List Candidates

• Always present your best self. Providers are always watching and evaluating.

• Maintain a positive attitude. Attend to any emotional issues. Join a Support Group.

• Be thankful. Remember to appreciate and recognize your Healthcare Team for their care.

• Advocate for yourself. Ask questions.

• Own your disease. Educate yourself about it from reliable sources.

• Be completely compliant with all instructions and Doctors’ orders.

• Maintain your best overall general health.

• Work on improving any health issues that are sub par. Exercise.

• Follow a kidney-friendly healthy diet.

• Take your medications on time and never miss a dose.

• Operate on “Lombardi Time”. “If you’re not early, you’re late.”

• If you know you will need procedures don’t wait to be told. Get your colonoscopy, get your female exam, get dental clearance.

• Make all necessary evaluation appointments as soon as possible. If it means being inconvenienced or driving to a less convenient location; so be it. The goal is to shorten the process as much as possible, get listed, and begin accruing waiting time.

• Don’t take no for an answer. If you are initially declined or listed as “Inactive”, find out what you can do to resolve it.

• Make sure you have some form of insurance and/or private resources available to pay for the transplant and aftercare. (Help may be available. Ask your Transplant Center)

• Make sure you have a caregiver to attend appointments and assist you during recovery.

• Make sure you have adequate transportation.

THOMAS R. OTTMAN – ADVOCACY ACTIVITIES

KIDNSY DISEASE AWARENESS, MENTORING & ORGAN DONATION ADVOCACY

• Carolinas Medical Center Kidney Disease Support Group:
Member 2011 to Present

• Save A Life Group: Organ Donation Outreach Advocate :
2014 to Present

• LifeShare of the Carolinas: Ambassador & Organ Donation Advocate: 2015 to Present

• National Kidney Foundation: Organ Donation Advocate, Peer Mentor:
2011 to Present

• Carolinas Medical Center, Transplant Center: Peer Speaker at Kidney Transplantation Group Training Sessions:
2015 to Present

• Carolinas Medical Center, Transplant Center Patient Advisory Council for Transplants (PACT):
Kidney Representative and Chairman, 2 Year Term 2015-2016

• Carolinas Medical Center, Transplant Symposium for Kidney Disease Professionals: Patient Guest Speaker, 2016, 2017 & 2018

• LifeShare Carolinas, Flag Raising Ceremony
at Artium Health Pineville Medical Center:
Patient Guest Speaker, April 2019

• Transplant Talk South Carolina Support Group:
Patient Speaker, May 2019

Conclusion

Tom has had some difficult issues to deal with in his life, FSGS, 2 Kidney Transplants and having a kidney rejection at the same time as dealing with the BK Virus. He has overcome all obstacles and yet continues to raise awareness of kidney disease. This is a great kidney patient.

NEW BLOG: CHARLES PECORARO IS SEEKING A KIDNEY DONOR

NEW BLOG: CHARLES PECORARO IS SEEKING A KIDNEY DONOR

By Jim Myers

Introduction

Recently, I did a Broadcast on Kidney Stories 2 with is Charles "Chuck" Pecoraro. https://www.facebook.com/groups/3099399563652650/permalink/3146374362288503/

He is a 64 year old, married man from Florida who is seeking a Kidney.

Chuck's Background
He was born into a military family, but became a business manager from the age of 19 in 1979 until June of 2019 when he became ill. He is married and has 2 children. He has also been an independent transportation driver in Myrtle Beach SC, where he created his own company, "Cabbz Here Taxi" that became a company with 25+ vehicles and 52 drivers. This company was closed.

Cancer Diagnosis
In June of 2019, he was diagnosed with Malignant Melanoma Cancer and had to undergo several surgeries in order to isolate and remove the cancer. In the process of recovery, he found himself unable to think, confused and agitated with difficulty communicating.

https://www.mayoclinic.org/diseases-conditions/melanoma/symptoms-causes/syc-20374884

After his wife scratched his back, she “exclaimed, You have cancer." He saw a Dermatologist, Dr Epperson, who did a screening and determined it was Cancer. Due to HBP, he was referred to a primary care physician. In November of 2019, Dr Hess conducted a physical examination, determining the the bp was still high. Despite medication the bp remained high, so in February 2020 additional tests were ordered.

On Valentine's Day, while out to dinner with his wife, Tina, Chuck received a phone call from Dr Hess. The doctor requested he hand the phone to Tina. He told Tina to take Chuck to the nearest hospital to be checked in.

Kidney Issues
At Waccamaw Community Hospital several tests and a kidney biopsy was performed. His condition continued to deteriorate to the point where he had to sell his business and move in with his Mother in Law. Once in Florida, he saw a Nephrologist, who had some blood tests performed. This led to an admission into Mease Countryside hospital where a heart catheter was installed and Chuck was placed on dialysis. The diagnosis was Amyloidsis. A fistula was later placed in his left arm. Charles has had many complications since his kidneys failed. Charles has been on dialysis the last 2 years.

https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178

He also has suffered from brain fog.

Brain Fog and Kidney Disease:
https://homedialysis.org/life-at-home/articles/everything-you-want-to-know-about-brain-fog-on-dialysis;

https://micaleasmeltzer.com/chronic-kidney-disease-and-the-effects-of-brain-fog/

Chuck is Currently Seeking A Kidney Donor
Chuck is currently seeking a Kidney Transplant. Should you wish to donate your kidney to him please refer to Charles Richard Pecoraro, my Transplantation Coordinator in Nurse Stephanie at 904-956-8782(Mayo Clinic, Jacksonville, FL) You might not be an exact match for him but through the "Paired Match" program he could still get a kidney from the National Database and yours would save another person.

If you are healthy and between 18-65 years old please start the process by completing the on line health questionnaire to see if you qualify for the program.

Charles has been married to his wife Tina and her children Jonathan and Brooke for 18 wonderful years. Tina is both his caretaker and a financial earner for the family so her schedule is filled up! She is the diamond in his life and her children are the gems. Please help “Chuck” extend his time with his family.

Link: https://www.mayoclinic.org/forms/florida-living-donor-transplant

Conclusion

Charles Pecoraro has shown great patience in overcoming some very difficult obstacles. Please share this blog to help him find his match.

NEW BLOG: GWENDOLYN WESTLUND IS MY HERO

NEW BLOG: GWENDOLYN WESTLUND IS MY HERO

By Jim Myers

Introduction

I recently did a Streamyard Broadcast with Gwendolyn Westlund on World Kidney Day. She is a Cancer Survivor, a Blood Recipient, a Heart Transplant Patient, a Recycled Life Warrior, a Kidney Transplant Candidate and a Speaker & Advocate! Link to the Broadcast:

https://m.facebook.com/story.php?story_fbid=1002902316985264&id=100043440381744

Gwen's Journey Begins with Hodgkins

Gwen 's journey began back in 2002 when she was diagnosed with Hodgkin's Lymphoma at the age of 21. She was successfully treated with radiation therapy, sending her cancer into remission a year after her diagnosis.

Issues With Her Heart

This was just the start of a long list of health issues for Gwen. Five years after the radiation for cancer, she learned that same radiation had scarred her heart.

"After a two-week hospital stay with double lung pneumonia, I was diagnosed with congestive heart failure due to mitral valve prolapse,”Gwen said, “I managed to keep my heart problems in check over the next five years by maintaining a healthy diet and taking my prescribed medications.”

By May of 2013, Gwen went into end-stage heart failure. She felt very ill and was taken to the Advocate Christ Medical Center in Oak Lawn, where she had numerous surgeries, blood transfusions, eventually receiving both a left ventricular assist device (LVAD) and a temporary external right ventricular assist device (RVAD). After being sedated for 8 days she was told she would need a new heart and had been placed on the heart transplant waiting list.

https://www.mayoclinic.org/tests-procedures/ventricular-assist-device/multimedia/left-ventricular-assist-device/img-20006714

https://pubmed.ncbi.nlm.nih.gov/25433641/

Gwen's Heart Transplant
After a two month hospital stay and three months waiting at home, she received the Heart Call in October of 2013 that a donor heart had been found. The heart transplant surgery was successfully done at the Advocate-Aurora Heart Institute at Christ Medical Center in Oak Lawn, Illinois.
https://care.advocatehealth.com/locations/cardiology-oak-lawn-95th-st-il

Gwen's Kidneys Failed

Gwen's health issues did not end there. During that 3 months stay in 2019, her body endured a lot of trauma and the immunosuppressive medications she took caused her kidneys to fail in March of 2019. After 3 rounds of pneumonia that year & while undergoing treatment, she suffered an Acute Kidney Injury. Without warning she was placed on dialysis

https://www.kidney.org/atoz/content/AcuteKidneyInjury;

https://www.mayoclinic.org/diseases-conditions/kidney-failure/symptoms-causes/syc-20369048

She has currently been on dialysis for 3 years.

Gwen Is Seeking a Live Kidney Donor

She is currently listed for a kidney transplant at Advocate Christ Medical Center’s (Oak Lawn, IL) kidney transplant office at 708-684-7100, tell them you’d like to schedule an appointment for a donor talk for Gwendolyn Westlund. Her post that you can share is referred to in the comments. She is actively looking for a living donor.

In Gwen's own words, "I'm particularly looking forward to travel. My mom and brother and twin nephews live in North Carolina and I can't visit. There are also tons of places I'd like to go. Nieces and nephews I'd like to make better memories with."

Link to Gwen's request for a kidney: https://m.facebook.com/story.php?story_fbid=3043498069252354&id=100007765724022;

Link to Gwen's Transplant Center: https://www.advocatehealth.com/health-services/organ-transplant-surgery-program/kidney-transplant/

Please share and if you can, please consider donating to this generous advocate!

Gwen's Advocacy Work

Despite all of her health issues, Gwen still advocates for all of us with the Gift of Hope and Vitalant Blood. She also plans to walk for various organizations including the National Kidney Foundation of Illinois and ACS Relay for Life.

Gift of Hope: https://www.giftofhope.org/

Vitalant Blood: https://www.vitalant.org/

National Kidney Foundation of Illinois:
https://www.nkfi.org/

ACS Relay for Life: https://www.cancer.org/involved/fundraise/relay-for-life.html;

https://secure.acsevents.org/site/SPageServer?pagename=relay

Conclusion:

Gwen is an example for all of us concerning her ability to persever through the most adverse of circumstances. Please share this blog so we can spread Gwen's story and help to find her a kidney donor!