REPLAY OF DR SEEMA MEHTA STEINKE BROADCAST

 Did You Miss The Broadcast With Dr Seema Mehta Steinke on Solid Organ Transplant Recipients and COVID-19? Catch the Instant Replay Here !

https://youtu.be/k_oaq10E598

REPLAY OF RACHEL RUUSMA BROADCAST

 Missed The Rachel Ruusma Broadcast? Her husband Mart was lost to Kidney Cancer. Rachel continues to work with and advocate for kidney cancer patients and caregivers. Catch The Instant Replay Here!

https://fb.watch/gL191f5

https://fb.watch/gL191f5gtE/gtE/

KIDNEY ADVOCATES RECEIVE U.S. PRESIDENT'S ACHIEVEMENT AWARD

 KIDNEY ADVOCATES RECEIVE U.S. PRESIDENT'S ACHIEVEMENT AWARD

https://www.yahoo.com/now/kidney-advocates-receive-u-presidents-210900335.html

REPLAY OF LAINIE ESQUIVEL BROADCAST

 Did you miss the Broadcast  With Lainie Esquivel,  PKD Patient and Member of the Advocacy Champions Network! Catch The Instant Replay Here!

https://fb.watch/gsi9ySFAHl/https://fb.watch/gsi9ySFAHl/

Replay of Dr Christian Hanna Broadcast

 

Did you miss the Broadcast With Dr Christian Hanna on PKD in Children? Catch the Instant Replay Here!
https://fb.watch/g9POBgEEni/

https://fb.watch/g9POBgEEni/

REPLAY OF DR SHEENEN MOA BROADCAST

 

https://fb.watch/g0Bf3j9PMc/

Did you miss the Broadcast With Dr. Shennen Mao, Kidney Transplant Surgeon on Kidney Transplants in Children? Catch the Instant Replay Here!

https://fb.watch/g0Bf3j9PMc/

KELLSEY REED BROADCAST REPLAY

 Did you miss the Kellsey Reed. CKD Registered Dietitian Nutritionist's Broadcast? Catch the Instant Replay Here! (FB STREAMING REPLAY)

https://m.facebook.com/story.php?story_fbid=pfbid0CHrBDZE3XhkyCMTewMGuWSK4arvFLa1E84BM5YbaR5NnT6Wo5TuYmqBSTxe3BAH5l&id=100043440381744

Hello Everyone and Welcome! Tonight our Special Guest is Kellsey Reed! Kellsey is a Registered Dietitian Nutritionist that specializes in Chronic Kidney Disease!

Her main emphasis in her practice with Chronic Kidney Disease Patients is to make sure her clients & members of the Chronic Kidney Disease Community get the information and support they need to improve their kidney health and manage their CKD for life. She is very dedicated to providing CKD patients the best support possible.

She used to work as a dialysis dietitian and much to her surprise discovered her dialysis patients received little or no support from their healthcare team when they were first diagnosed with CKD.

It is Kellsey's sincere belief that Kidney Patients deserve to do all of the things they love to do like travel,  go out to eat at restaurants, date nights, celebrating holidays and birthdays without the stress of wondering if you are eating right for your chronic kidney disease.

No one page handouts here! Kellsey believes in giving Kidney Patients all of the tools, resources and support so you can eat as a CKD patient with 100% confidence.  She is particularly known for her ability to help CKD patients learn how to handle those dietary situations that cause us so much stress!

She conducts a CKD With Confidence Program that will leave you in control of your CKD diet.

Kellsey created her practice to help Kidney Patients protect their kidneys no matter what stage you're in with kidney disease.   She is also very good at answering questions on the fly, so please ask during our broadcast tonight.

Please give a warm welcome to Kellsey Reed!

REPLAY OF SHANE MOORE AND MICHELLE RECENDEZ BROADCAST ON SILENT REJECTION

 Did You Miss The Broadcast? Replay It Here!. This week on Kidney Stories 2 our guests were Shane Moore, Kidney Transplant Patient & Michelle Recendez, from Transplant Genomics on Silent Rejection & OmniGraf! This is a Discussion You Need to Check Out! @EurofinsTGI

https://m.facebook.com/story.php?story_fbid=2122688721235226&id=100043440381744

Replay of Martha Gershun and John Lantos MD BROADCAST

 Did  You Miss The Broadcast With Martha Gershun and Dr John Landon On Their New Book,  Kidney To Share? A Great Discussion About Making Kidney Transplants Easier. Catch The Instant Replay Here!

https://m.facebook.com/story.php?story_fbid=5343227062424647&id=100043440381744https://m.facebook.com/story.php?story_fbid=5343227062424647&id=100043440381744

REPLAY OF MARTIN HUGHES BROADCAST

Did you miss the Martin Hughes Broadcast? Martin is a Champion for the Homeless in New York City and A Kidney Patient Seeking a Pre-Emptive Kidney Transplant.  Check Out the Instant Replay Here and Please Share This Broadcast!
https://m.facebook.com/story.php?story_fbid=533521521846068&id=100043440381744

Replay of Dr Jayme Locke Broadcast

 Did you miss the live broadcast of Dr Jayme Locke and our discussion of Xenotransplatation? The first pig kidney transplanted successfully into a brain-dead human recipient! Check Out The Instant Replay Here!

https://m.facebook.com/story.php?story_fbid=3272000636415624&id=100043440381744

Speaking Tomorrow at PKD CON

I am speaking twice tomorrow at the PKD Foundation’s PKD Connect Conference, first at 10AMCST as a Facillitator for the Topic "Transplant in Children " where Dr Sheenen Moa is the Presenter and again at 1:10AMCST as the Presenter of the Topic "Advocacy-The Power Of The Patient Voice." Hope to See You There!

https://pkdconnectcon.app.swapcard.com/c/sd-meetings-and-events

George Franklin Broadcast Replay

 Did You Miss The George Franklin Broadcast? Replay It Here!

https://m.facebook.com/story.php?story_fbid=573266600598919&id=100043440381744

George Franklin Promo

 Tune in Friday, May 6th at 8:00 PM EDT/7:00 PM CST for a live broadcast of Kidney Stories 2 with James Myers. This week on Kidney Stories 2 our guest is George Franklin, Member of the Quarter Century Club and Celebrating his 46th Kidneyversary. Join us 

https://m.facebook.com/story.php?story_fbid=564304061694268&id=100043440381744

Replay of Dr Sylvia Rosas Broadcast

 Missed the Dr Sylvia Rosas Broadcast? Replay It Here!

https://m.facebook.com/story.php?story_fbid=2097225483784970&id=100043440381744

Dr EricShannonParr Broadcast

 TONIGHT!

Tune in Tuesday, May 3rd at 8:00 PM EDT/7:00 PM CST for a live broadcast of Kidney Stories 2 with James "Uncle Jim" Myers. This week on Kidney Stories 2 our guest is Dr Eric Parr, EdD, MS & Kidney Recipient. Join us and hang out with Uncle Jim

https://youtu.be/boup9TPzB-o 

PKDF ACN ADOCACY DAY

 Tomorrow the PKD Foundation Advocacy Champions are meeting with our Members of Congress to discuss, Appropriations for Funding PKD Research,  The Living Donor Protection Act & Disparities in Healthcare 

https://pkdcure.org/register-for-pkdf-virtual-advocacy-day-2022/

#EndPKD 

PKD FAMILY RECIEVES MANY KIDNEY TRANSPLANTS

 Offaly family counts its blessings as three sisters receive transplants - https://goo.gl/alerts/PXkVX #GoogleAlerts 

https://www.offalyindependent.ie/2022/04/23/offaly-family-counts-its-blessings-as-three-sisters-receive-transplants/

Walking for the PKDF

Beautiful weather today, 80's! Took a longer walk today, 7370 Steps, 3.37 Miles in 1hr 17 minutes. I am walking on behalf of the PKD Foundation. Please donate so they may find a cure!

https://m.facebook.com/story.php?story_fbid=372155491342999&id=100043440381744

Support The PKDF Advocacy Champions

 PKD Foundation Retweeted

CURA Strategies

@curastrategies

The @PKDFoundation's Virtual Advocacy Day is next week! We are proud to support over 100 advocates who will meet with federal lawmakers to discuss policies that would improve PKD research, treatment and care: 

https://t.co/cp3gKylKfj

Promotion of Steve Bundage

 Tune in Friday, April 22d at 8:00 PM EDT/7:00 PM CST for a live broadcast of Kidney Stories 2 with James "Uncle Jim" Myers. This week on Kidney Stories 2 our guest is Steve Bundage, Kidney Recipient. Join us for an inspiring show and hang out with Uncle Jim.

https://youtu.be/6Z2jZU3SC0M

Replay of Glenn Frommer/Ride for PKD Broadcast

 Did you miss the Glenn Frommer Ride for PKD Broadcast? Glenn is riding from San Francisco to Cape Cod, over 5,300 miles, 200,000 feet of climbing, 100 days of riding covering 18 states, starting May 1st & ending September 1st to raise money for PKD research. Check out the Instant Replay Here and see how you can be involved.

https://youtu.be/KFPcvn-uFEs

#Glenn Frommer,  #kidneydisease, #chronic kidney disease, #a kidney for, #kidney donor, #kidney transplant,  #polycystic kidney disease, #ride for pkd, #pkd foundation, #pkd research, #pkdcure.org, #cure PKD, pkd advocacy champions

Promotion For Glenn Frommer Broadcast

 

Tune in Tuesday, April 19th at 8:00 PM EDT/7:00 PM CST for a live broadcast of Kidney Stories 2 with James "Uncle Jim" Myers. This week on Kidney Stories 2 our guest is Glenn Frommer,  Super PKD Advocate, & Head Rider, Planner, Fundraiser for The Ride for PKD!
Join us for an inspiring show and hang out with Uncle Jim.
https://youtu.be/KFPcvn-uFEshttps://youtu.be/KFPcvn-uFEs

REPLAY OF LISA GEE BROADCAST

MISSED THE LISA GEE BROADCAST? CATCH THE INSTANT REPLAY HERE!

https://youtu.be/h4pw8nJ3jPM

TONIGHT! LISA GEE ON KIDNEY STORIES

 

TONIGHT!

Tune in Friday, April 15th at 8:00 PM EDT/7:00 PM CST for a live broadcast of Kidney Stories 2 with James "Uncle Jim" Myers. This week on Kidney Stories 2 our guest is Lisa Gee, Kidney Transplant Candidate. Join us for an inspiring show and hang out with Uncle Jim.
https://youtu.be/h4pw8nJ3jPM

#kidney,  #kidneys,  #kidney disease,#chronic kidney disease, #a kidney for, #kidney donor,  #kidney transplant,  #pkd, #polycystic kidney disease, #fsgs, #dialysis,  #home dialysis, # peritoneal dialysis #kidney cancer 

Podcast of Kadijatu Bah Interview

 

Draft Introduction for Kadijatu Bah

Welcome Everyone! Our Guest tonight is Kadijatu Bah. She is a 46 yr old wife, mother of 3 adult children and a nurse. She has been in the United States for over 25 years. She is originally from Sierra Leone,  West Africa.


She first discovered she had problems with her kidneys when she was pregnant with her daughter 20 years ago when protein was found in her blood.


After her daughter was born,  the protein continued to increase and eventually her kidneys failed. She started peritoneal dialysis last year, 7 nights a week,  9 hours per session.


She has had many challenges and side effects while on dialysis that has caused her a lot of difficulty in her personal and professional life.


She is currently listed at Medstar Georgetown University Hospital? Your Transplant Coordinator there is Jennifer Austin at 202-444-0653.


You can also apply online to start the process to donate at www.mgti.donorscreen.org.


She's also working with Kent Bressler and Kidney/Solutions at 830-285-2140 or info@kidneysolutions.org.

Please give a warm welcome to Kadijatu Bah!

https://anchor.fm/james-myers3/episodes/Podcast-of-Kadijatu-Bah-Interview-e1h48in

Promotion of Lisa Gee Broadcast

Tune in Friday, April 15th at 8:00 PM EDT/7:00 PM CST for a live broadcast of Kidney Stories 2 with James "Uncle Jim" Myers. This week on Kidney Stories 2 our guest is Lisa Gee, Kidney Transplant Candidate. Join us for an inspiring show and hang out with Uncle Jim.

 

Kadijatu Bah Broadcast Replay

https://youtube.com/channel/UCTU0npWyLd_aw495D3RxVdA Missed the Kadijatu Bah Broadcast? Replay It Here!

https://youtu.be/pYnaKWOFW2s

https://youtu.be/pYnaKWOFW2s

Kadijatu Bah Broadcast is Tonight

 BROADCAST TONIGHT!

Tune in Friday, April 8th at 8:00 PM EDT/7:00 PM CST for a live broadcast of Kidney Stories 2 with James "Uncle Jim" Myers. This week on Kidney Stories 2 our guest is Kadijatu Bah, Potential Kidney Recipient. Join us!

https://youtu.be/pYnaKWOFW2s

Kadijatu Bah Broadcast Promotion

 

Tune in Friday, April 8th at 8:00 PM EDT/7:00 PM CST for a live broadcast of Kidney Stories 2 with James "Uncle Jim" Myers. This week on Kidney Stories 2 our guest is Kadijatu Bah, Potential Kidney Recipient. Join us. https://youtu.be/nwNKXwX4Unk

Carol Aguilar Broadcast

 Missed the Carol Aguilar Broadcast? No worries! Click on the photo/circle and Catch the Instant Replay Here!

https://m.facebook.com/story.php?story_fbid=377559604231320&id=100043440381744

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

Join Us 2 PKDF ACN

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

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:

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

Video for the PKDF ACN

0

 

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

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!

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.