Missed the Leesa Thompson Broadcast? Replay It Here!
https://fb.watch/aQs_VCCTqP/
Saturday, January 29, 2022
Thursday, January 27, 2022
Leesa's Kidney Page
http://kidney4leesa.blogspot.com/2018/03/got-kidney.html?m=1
Kidney4Leesa.com
Leesa has received her transplant. Thank you all for your help. If page does not load HIT THE HOME BUTTON.
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SUNDAY, MARCH 4, 2018
An Open Letter to Save My Life
I Need Your Help:
I am Leesa and I need a kidney. I have end-stage renal failure due to very high fevers from an undiagnosed kidney infection at birth. I've had kidney problems all my life but unfortunately they were worsened when an orthopedist prescribed Advil to treat pain after a knee injury. Transplant is now my only long-term option.
I need an angel to step forward to save my life by volunteering to give me a kidney (blood type A or O). Tall order, I know. It's a big ask. So I'm not asking. But I am asking for your help in another way. There's something else that you can do to help me (and others with a similar need), even if you're not a donor: I need you to spread the word, and I'll show you how to do that in this post. Your job simply would be to get the word out about my need for a kidney.
Leesa Cohen Thompson
I am told that the more people who know of my need, the better my chance is of reaching a person willing to be an altruistic donor. So, now it's all about getting the word out. That's where you come in.
Who Am I?
I am a mother, daughter, volunteer, teacher and a person of faith.
For decades I’ve been passionate about our environment in New York’s scenic Hudson Valley. During the 1970 National Earth Day, as a teenager I became aware of the need to protect our world and participated in a cleanup of my high school grounds. I coordinated Earth Day 1990 at Bear Mountain State Park drawing over 30,000 participants and New York’s Governor, Mario Cuomo, gave the Keynote Address. For the last 36 years I have continued to volunteer at the Clearwater’s Great Hudson River Revival held to promote awareness of a cleaner Hudson River. Through my involvement with Riverlovers, Ferry Sloops, and the Beacon Sloop Club, I sail and encourage others to experience the beauty of the river. In conjunction with those groups I look forward to organizing local events for Earth Day 2020, God willing.
Professionally, I studied speech pathology, eventually doing early intervention, primarily in Hispanic communities. Typical clients are frustrated 2-year olds with very few words. Parents need help encouraging their children to play and communicate. I develop strategies to help those children.
To date, I have aided in facilitating communication strategies for hundreds of families in the Peekskill, NY area over my 25 years of public service. I have watched those families' children grow up to have fruitful, productive and happy lives.
Also, I am an active board member of a program (Pegasus) that helps kids struggling with physical, verbal or social issues by using horseback riding to help those children bloom.
And, I have 10 years of service with Destination Imagination teaching children to solve problems by thinking creatively.
I've always helped others. Now I need someone (any gender) to help me.
How to Help Me:
Give me 15 minutes (or more) and use that time to tell the world about this website (Kidney4Leesa.com).
• Email: Send this website to your friends (all of them) by email.
• Facebook: Post a small note on Facebook with a link to this website (icon above).
• Other Social Media Sites: Post a small note with a link to this website
•
• (icons below).
And ask your contacts, readers, friends and acquaintances to do the same (to give this webpage exponential distribution).
Why this is So Serious - My Options:
Most people have two well-functioning kidneys but can lead a full and equally healthy life with just one kidney. Both of my kidneys are almost fully shut down. So, medically I now have only two options to continue living:
• dialysis (life expectancy about 5 years)
• transplant (a new lease on life)
According to USRDS data, Kidney transplant recipients fare far better than dialysis patients. I need those additional years in order to continue helping others.
My family members are disqualified as donors.
Also, if a willing donor is not an exact match, through an arrangement called "Paired Kidney Donation" (kidney swapping) a donor who is not a match for me might be a match for someone else and I would be eligible to receive that person's donor's kidney that would be a match for me.
Lloyd E. Ratner, MD New York Presbyterian-Columbia
Please help me by sharing this post with your own network of friends.
Shares = action, and action is what is needed now.
•
•
To Speak with Someone Confidentially:
If you'd like to speak with someone confidentially, please call Rivky at Renewal of Life* (718-431-9831 x 209), or email her at R23596@Renewal.org. My Patient ID is R23596. Your questions will be answered by a qualified person who is familiar with my case.
Speaking with a Renewal staff member is much better than speaking with me. They know far more than I do and you will get better information from them than from me. So please, feel free to contact Renewal.
Keep in mind that a confidential phone call to Renewal does not come with any obligations to proceed further.
Together, we can do it. Yes, we can.
Thank you,
Leesa
______________
*Renewal of Life Inc is an IRS 501(c)(3) not-for-profit organization whose mission is to find and match kidney donors for those suffering from various forms of kidney disease.
Note: It is illegal to exchange money for a kidney. No such request will be granted any consideration.
at March 04, 2018
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Weill-Cornell Paired Donation Program
https://weillcornell.org/services/kidney-and-pancreas-transplantation/kidney-paired-donation
Leesa and the Because of Organ Donation Broadcast
https://www.facebook.com/becauseoforgandonation/videos/965387467664654/
Leesa and Kerri Tanner
Kerri Tanner, Living Donor
https://www.liveonaz.org/stories/kerri-tanner/?lang=en
Register in honor of Kerri
Share Kerri's story with others:
Arizona resident gives kidney to woman she will never know...
Kerri Tanner, a mom to three kids and Arizona native, chose to give the ultimate gift to a stranger. She worked with the National Kidney Registry to find a recipient who needed a kidney and created a kidney chain which ended up not only giving this woman her kidney, but started a chain that immediately gave two other people kidneys as well.
While her recipient has chosen to not yet meet Kerri, she still knows each day that she made an amazing difference in their life. The recipient’s transplant center reports that her kidney is doing well in the recipient.
This is how a woman in Arizona impacted a woman in New York that she may never meet.
Leesa and the NKR VOUCHER PROGRAM
Voucher Program
https://www.kidneyregistry.org/for-centers/voucher-program/The National Kidney Registry (NKR) Voucher Program allows a living kidney donor to choose the most convenient time frame for their kidney donation surgery and provide one or more vouchers to people who can then be prioritized to receive a living donor kidney through the NKR if/when they need a transplant.
Leesa and Mark Scotch
A Plover man donated a kidney to save a stranger. Now he's cycling cross-country to raise awareness.
https://www.stevenspointjournal.com/story/news/health/2021/09/22/ultra-cyclist-mark-scotch-donated-kidney-save-stranger/8257872002/
Tuesday, January 18, 2022
Dr Patel Blog Final
Blog: Dr Sejal Patel, Physician, Researcher and Kidney Transplant Patient
By Jim Myers
Introduction
On Friday, January 14th, 2022, I did a remarkably broadcast with Sejal Patel, M.D., CCRP. https://m.facebook.com/story.php?story_fbid=497914464999895&id=100043440381744.
Dr. Patel is a Certified Clinical Research Coordinator, Kidney Researcher, Pre-Emptive Kidney/Pancreas Transplant Patient and a remarkably generous medical professional.
Our original conversation was scheduled to take place on November 5th, 2021, but on November 4th, 2021, Sajel had her second kidney transplant. We rescheduled our talk.
She is a graduate of the Medical University of Silesia in Poland, she is Board Certified through the ECFMG, (Educational Comission for Foreign Medical Graduates) and the Accreditation Counsel for Graduate Medical Education. Sejal is also a Clinical Research Professional (CCRP) and a Certified Member of the SoCRA, the Society of Clinical Research Associates.
She is currently employed with the Clinical Research Studies Unit at the Mayo Clinic in Arizona, where she is working on projects like Kidney Research with a Kidney Transplant Group, Increasing Antibodies with the Kidney Transplant Population vs COVID-19, as well as Studies concerning Kidney Transplant that last for a lifetime by preventing rejection, Taking Kidney Transplant Patients off of immunosuppressive medications by injecting donor stem cells,& discovering meds to lower antibodies so people can be transplanted that have a high level of antigens.
She has 8+ years of clinical and research experience with the Mayo Clinic Clinical Studies Unit/Multi-Disciplinary Transplant Research Team as a Certified Clinical Research Studies since November of 2019, in the areas of Psychiatry, Pediatric Solid and Liquid Tumors, Rare disease, Solid Organ and Bone Marrow Transplant Medicine, Diabetes, Immunology, Infectious Disease, Orthopedics, Transfusion medicine, Transplantation, Gastroenterology, Rheumatology, Cosmetic Science, Dermatology, and Ophthalmology.
She recently received a promotion to Senior Research Program Coordinator.
We were very fortunate to have her on the Broadcast and to have the benefit of her unequaled expertise.
https://www.blogger.com/blog/post/edit/1185533682031565831/8345240592456927359
Experiences As A Kidney Patient
Dr. Patel is not only a remarkable researcher, but a kidney patient as well! When she was 10/11, she was first diagnosed with Type 1 Diabetes which may have resulted from an Autoimmune Disease/Malaria she acquired at the age of 9 while visiting India.
She lived unremarkably with Type 1 Diabetes through medical school and her residency rotations. when suddenly she began to feel weak and dizzy. She became anemic. After many doctor visits and iron infusions, her condition did not improve.
After a visit with her Endrocronologist and her normal 3 month check up, she learned that her creatinine had jumped to 2.5. The typical range for serum creatinine for adult women, is 0.59 to 1.04 mg/dL (52.2 to 91.9 micromoles/L).
https://www.mayoclinic.org/tests-procedures/creatinine-test/about/pac-20384646.
Her doctor then ordered a biopsy where it was discovered that she was in Stage 5 Kidney Failure secondary to Stage 1 Diabetes! She was immediately referred to the Mayo Clinic in Arizona for a preemptive kidney/pancreas transplant.
What Is A Pre-Emptive Kidney Transplant?
A preemptive kidney transplant is when you receive a kidney transplant before your kidney function deteriorates to the point of needing dialysis to replace the normal filtering function of the kidneys.
https://www.mayoclinic.org/tests-procedures/preemptive-kidney-transplant/pyc-20384830
See Also: Preemptive Kidney Transplants: Why Aren't They More Popular? https://www.kidney.org/newsletter/preemptive-kidney-transplants.
Qualifications For A Kidney Pancreas Transplant
A Kidney/Pancreas Transplant had some special requirements that Sejal had to overcome.
The requirements for a Kidney/ Pancreas Transplant are:
In order to accrue KP waiting time, a KP candidate must be 18 years or older, and:
• Be registered for a kidney‐pancreas transplant
• Qualify for kidney waiting time
• Meet one of the following criteria:
• Is on insulin and has a C‐peptide value less than or equal to 2 ng/mL
• Is on insulin and has a C‐peptide value greater than 2 ng/mL and has a body mass index less (BMI) than or equal to the maximum allowable BMI.
https://optn.transplant.hrsa.gov/professionals/by-topic/guidance/kidney-pancreas-allocation-system-frequently-asked-questions/
Pancreas Transplants, https://www.mayoclinic.org/tests-procedures/pancreas-transplant/about/pac-20384783
Kidney-Pancreas Transplant, https://www.kidney.org/atoz/content/kidpantx.
Fortunately, Sejal met the criteria, and was listed a week after applying.
1st Kidney Transplant
Fortunately, Dr. Patel was transplanted at the Mayo Clinic in Arizona in November of 2009. The transplant went off without a hitch and Sejal was doing very well. The results as far as her new kidney and pancreas were concerned were initially very good. Sejal called it, "...the greatest thing ever," because it cured her diabetes while saving her kidney function.
Kent's Kidney Stories, Episode 81: Sejal Patel Needs A Kidney Donor. Are YOU The One? https://youtu.be/-NXrZPm6Ubo. This Kidney Transplant would last her about 12 years.
Complications and Challenges to First Kidney Transplant
In 2021, Sejal's kidney began to get weaker, causing her to become listed again for a kidney transplant. She contracted Valley Fever in January of 2021, causing her to start dialysis, with a creatinine level of 12.
"Valley fever, also called coccidioidomycosis, is an infection caused by the fungus Coccidioides. The fungus is known to live in the soil in the southwestern United States and parts of Mexico and Central and South America. The fungus was also recently found in south-central Washington. People can get Valley fever by breathing in the microscopic fungal spores from the air, although most people who breathe in the spores don’t get sick. Usually, people who get sick with Valley fever will get better on their own within weeks to months, but some people will need antifungal medication. Certain groups of people are at higher risk for becoming severely ill. It’s difficult to prevent exposure to Coccidioides in areas where it’s common in the environment, but people who are at higher risk for severe Valley fever should try to avoid breathing in large amounts of dust if they’re in these areas."
https://www.cdc.gov/fungal/diseases/coccidioidomycosis/index.html
Amount the people considered to be at higher risk are people with solid organ transplants, like your kidneys.
See Also: https://www.mayoclinic.org/diseases-conditions/valley-fever/symptoms-causes/syc-20378761
"Renal impairment is a frequent occurrence among patients with the Rift Valley fever (RVF), and is probably the result of hypovolemia and multiple organ dysfunctions in the majority of cases."
Acute renal failure associated with the Rift Valley fever: a single center study
https://pubmed.ncbi.nlm.nih.gov/19861868/
2d Kidney Transplant
Sejal had her second kidney transplant at Mayos Arizona on November 4th, 2021. This transplant was from a deceased donor, who suffered from Acute Kidney Injury, and therefore would require a little dialysis after transplant to get the kidney to wake up and function properly. After the transplant, she did have dialysis with a catheter 5 times. Her creatinine level has improved to 1.2. Two weeks ago, she returned to work.
Professional Studies Experiences
Dr. Patel spoke to us about several of the on-going studies she is involved with:
Freedom-1 Study – Talaris (Active):
The goal of this study is with living kidney transplants, to eliminate the use of immunosuppressive medications after 1 yr of transplant. It will require the donor to donate stem cells.
Freedom-1 Clinical Trial for Kidney Transplant Patients
https://youtu.be/SxJhxrfxOd8
This is a research study to test a new investigational product called FCR001, a stem cell-based product that comes from cells collected from the kidney donor’s blood and is infused into a kidney transplant recipient who has been assigned to receive FCR001. Primary objective is to evaluate the proportion of FCR001 recipients (FCR-R) who are free from IS, (immunosuppressive medications) without biopsy-proven acute rejection (BPAR), at 24 months post-transplant.
This is a new study of an experimental medication, designed to prevent rejection in kidney transplant recipients.
Antibody Mediated Rejection (AMR) Study – Hansa (Active):
The aims of treatment are to preserve renal function, reduce histological injury, and reduce the titer of donor-specific antibody (To prevent kidney rejection after transplant)
The purpose of this research is to learn if an experimental drug, imlifidase, is better at treating kidney graft rejection caused by antibodies than the standard of care treatment, plasma exchange. The primary endpoint of this study is: Maximum reduction in mean DSA levels at any time point during the 5 days following the start of treatment.
• A Randomized, Open-Label, Multi-Centre, Active Control Study Investigating the Efficacy and Safety of Imlifidase in Eliminating Donor Specific Anti-HLA Antibodies in the Treatment of Active Antibody-Mediated Rejection in Kidney Transplant Patients
An Efficacy and Safety Study of Imlifidase in Treatment of Antibody-Mediated Rejection in Kidney Transplant Patients
https://clinicaltrials.gov/ct2/show/NCT03897205;
Recommended Treatment for Antibody-mediated Rejection After Kidney Transplantation: The 2019 Expert Consensus From the Transplantion Society Working Group
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7176344/
• SIMPLE study- The purpose of this research is to learn if taking once a day tacrolimus extended release (Envarsus XR®) increases medication compliance, reduces transplant and medication side effects, and increases quality of life, as compared to tacrolimus twice daily immediate release
(The affect of lowering the dosage of Tacrolimus to 1x/day)
• A Prospective, Observational, Multicenter, Open-Label, Pilot Study to Investigate Medication Adherence and Patient Reported Symptom Occurrence and Interference with Daily Life Comparing Once-Daily Envarsus XR® and Twice-Daily Immediate Release Tacrolimus in Adult Renal Transplant Recipients
This study is completed for enrollment and we are just in follow up phase with the patients and completing data entry so we can look at the outcome when all the information is completed.
A Simple Novel Technique to Estimate Tacrolimus Dosages During the Early Post Kidney Transplantation Period
https://pubmed.ncbi.nlm.nih.gov/26518946/;
Envarsus XR Compared to Immediate Release Tacrolimus (SIMPLE)
https://clinicaltrials.gov/ct2/show/NCT03979365;
Imagine Study -
(To Prevent Kidney Transplant Rejection in diseases like FSGS)
This study is being carried out to see if the investigational product C1-esterase inhibitor (C1- INH) is effective in treating AMR, and if so, how it compares with the standard treatment. C1- INH is a natural protein found in your blood, and it helps control the immune system. A C1- INH medication called Berinert has been approved for patients who are missing the protein and have an inherited disease called hereditary angioedema (HAE).
A Double-blind, Randomized-withdrawal, Placebo-controlled Study to Evaluate the Efficacy and Safety of Human Plasma-derived C1-esterase Inhibitor as add-on to Standard of Care for the Treatment of Refractory Antibody Mediated Rejection in Adult Renal Transplant Recipients
Antibody-Mediated Rejection: A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5349636/;
Recommended Treatment for Antibody-mediated Rejection After Kidney Transplantation: The 2019 Expert Consensus From the Transplantion Society Working Group
https://journals.lww.com/transplantjournal/fulltext/2020/05000/recommended_treatment_for_antibody_mediated.11.aspx;
Efficacy and Safety of Human Plasma-derived C1-esterase Inhibitor as add-on to Standard of Care for the Treatment of Refractory Antibody Mediated Rejection (AMR) in Adult Renal Transplant Recipients
https://clinicaltrials.gov/ct2/show/NCT03221842;
The Role of Genetics and Socioeconomic Factors in Outcomes After Kidney Transplantation in Hispanics and American Indians
The purpose of this research is to develop tools to assess socioeconomic risk factors and to identify genes associated with transplant outcomes in Hispanics and American Indians. A better understanding of these factors will help guide management and improve future outcomes.
Ethnic advantages in kidney transplant outcomes: the Hispanic Paradox at work?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2721429/;
Association of Race and Ethnicity With Live Donor Kidney Transplantation in the United States From 1995 to 2014
https://jamanetwork.com/journals/jama/fullarticle/2667722.
She hopes that the news of the studies, "reaches transplant patients that may be interested and they can reach out to mayo if it helps any of them."
When I asked Dr. Patel why she does research work, she answered, "We're hoping to find better treatment, I really like the fact that we are hoping to improve their [Kidney Patients] lives."
Future Projects
Dr. Patel did mention one future project that is in the works dealing with COVID-19 and the Kidney Transplant Population. Some kidney transplant patients on immunosuppressive medications, despite taking the vaccine are not getting sufficient antibodies to ward off the COVID-19 variants. One study is about what must be done so transplant patients on immunosuppressants can develop the necessary antibodies to protect them from the virus.
Dr. Patel noted that the study is NOT ready to go yet, and members of the public cannot apply at this time.
She also hopes that new studies in cardiovascular issues will be helpful to patients under her new responsibilities.
Conclusion
Dr. Patel was very candid about her Kidney Story from diagnosis to kidney transplant. Her insights into her work were particularly insightful. This was a special conversation from a special physician and Kidney Patient!
Sunday, January 16, 2022
Draft Blog Dr Patel
Blog: Dr Sejal Patel, Physician, Researcher and Kidney Transplant Patient
By Jim Myers
Introduction
On Friday, January 14th, 2022, I did a remarkably broadcast with Sejal Patel, M.D., CCRP. https://m.facebook.com/story.php?story_fbid=497914464999895&id=100043440381744.
Dr. Patel is a Certified Clinical Research Coordinator, Kidney Researcher, Pre-Emptive Kidney/Pancreas Transplant Patient and a remarkably generous medical professional.
Our original conversation was scheduled to take place on November 5th, 2021, but on November 4th, 2021, Sajel had her second kidney transplant. We rescheduled our talk.
She is a graduate of the Medical University of Silesia in Poland, she is Board Certified through the ECFMG, (Educational Comission for Foreign Medical Graduates) and the Accreditation Counsel for Graduate Medical Education. Sejal is also a Clinical Research Professional (CCRP) and a Certified Member of the SoCRA, the Society of Clinical Research Associates.
She is currently employed with the Clinical Research Studies Unit at the Mayo Clinic in Arizona, where she is working on projects like Kidney Research with a Kidney Transplant Group, Increasing Antibodies with the Kidney Transplant Population vs COVID-19, as well as Studies concerning Kidney Transplant that last for a lifetime by preventing rejection, Taking Kidney Transplant Patients off of immunosuppressive medications by injecting donor stem cells,& discovering meds to lower antibodies so people can be transplanted that have a high level of antigens.
She has 8+ years of clinical and research experience with the Mayo Clinic Clinical Studies Unit/Multi-Disciplinary Transplant Research Team as a Certified Clinical Research Studies since November of 2019, in the areas of Psychiatry, Pediatric Solid and Liquid Tumors, Rare disease, Solid Organ and Bone Marrow Transplant Medicine, Diabetes, Immunology, Infectious Disease, Orthopedics, Transfusion medicine, Transplantation, Gastroenterology, Rheumatology, Cosmetic Science, Dermatology, and Ophthalmology.
She recently received a promotion to Senior Research Program Coordinator.
We were very fortunate to have her on the Broadcast and to have the benefit of her unequaled expertise.
https://www.blogger.com/blog/post/edit/1185533682031565831/8345240592456927359
Experiences As A Kidney Patient
Dr. Patel is not only a remarkable researcher, but a kidney patient as well! When she was 10/11, she was first diagnosed with Type 1 Diabetes which may have resulted from an Autoimmune Disease/Malaria she acquired at the age of 9 while visiting India.
She lived unremarkably with Type 1 Diabetes through medical school and her residency rotations. when suddenly she began to feel weak and dizzy. She became anemic. After many doctor visits and iron infusions, her condition did not improve.
After a visit with her Endrocronologist and her normal 3 month check up, she learned that her creatinine had jumped to 2.5. The typical range for serum creatinine for adult women, is 0.59 to 1.04 mg/dL (52.2 to 91.9 micromoles/L).
https://www.mayoclinic.org/tests-procedures/creatinine-test/about/pac-20384646.
Her doctor then ordered a biopsy where it was discovered that she was in Stage 5 Kidney Failure secondary to Stage 1 Diabetes! She was immediately referred to the Mayo Clinic in Arizona for a preemptive kidney/pancreas transplant.
What Is A Pre-Emptive Kidney Transplant?
A preemptive kidney transplant is when you receive a kidney transplant before your kidney function deteriorates to the point of needing dialysis to replace the normal filtering function of the kidneys.
https://www.mayoclinic.org/tests-procedures/preemptive-kidney-transplant/pyc-20384830
See Also: Preemptive Kidney Transplants: Why Aren't They More Popular? https://www.kidney.org/newsletter/preemptive-kidney-transplants.
Qualifications For A Kidney Pancreas Transplant
A Kidney/Pancreas Transplant had some special requirements that Sejal had to overcome.
The requirements for a Kidney/ Pancreas Transplant are:
In order to accrue KP waiting time, a KP candidate must be 18 years or older, and:
• Be registered for a kidney‐pancreas transplant
• Qualify for kidney waiting time
• Meet one of the following criteria:
• Is on insulin and has a C‐peptide value less than or equal to 2 ng/mL
• Is on insulin and has a C‐peptide value greater than 2 ng/mL and has a body mass index less (BMI) than or equal to the maximum allowable BMI.
https://optn.transplant.hrsa.gov/professionals/by-topic/guidance/kidney-pancreas-allocation-system-frequently-asked-questions/
Pancreas Transplants, https://www.mayoclinic.org/tests-procedures/pancreas-transplant/about/pac-20384783
Kidney-Pancreas Transplant, https://www.kidney.org/atoz/content/kidpantx.
Fortunately, Sejal met the criteria, and was listed a week after applying.
1st Kidney Transplant
Fortunately, Dr. Patel was transplanted at the Mayo Clinic in Arizona in November of 2009. The transplant went off without a hitch and Sejal was doing very well. The results as far as her new kidney and pancreas were concerned were initially very good. Sejal called it, "...the greatest thing ever," because it cured her diabetes while saving her kidney function.
Kent's Kidney Stories, Episode 81: Sejal Patel Needs A Kidney Donor. Are YOU The One? https://youtu.be/-NXrZPm6Ubo. This Kidney Transplant would last her about 12 years.
Complications and Challenges to First Kidney Transplant
In 2021, Sejal's kidney began to get weaker, causing her to become listed again for a kidney transplant. She contracted Valley Fever in January of 2021, causing her to start dialysis, with a creatinine level of 12.
"Valley fever, also called coccidioidomycosis, is an infection caused by the fungus Coccidioides. The fungus is known to live in the soil in the southwestern United States and parts of Mexico and Central and South America. The fungus was also recently found in south-central Washington. People can get Valley fever by breathing in the microscopic fungal spores from the air, although most people who breathe in the spores don’t get sick. Usually, people who get sick with Valley fever will get better on their own within weeks to months, but some people will need antifungal medication. Certain groups of people are at higher risk for becoming severely ill. It’s difficult to prevent exposure to Coccidioides in areas where it’s common in the environment, but people who are at higher risk for severe Valley fever should try to avoid breathing in large amounts of dust if they’re in these areas."
https://www.cdc.gov/fungal/diseases/coccidioidomycosis/index.html
Amount the people considered to be at higher risk are people with solid organ transplants, like your kidneys.
See Also: https://www.mayoclinic.org/diseases-conditions/valley-fever/symptoms-causes/syc-20378761
"Renal impairment is a frequent occurrence among patients with the Rift Valley fever (RVF), and is probably the result of hypovolemia and multiple organ dysfunctions in the majority of cases."
Acute renal failure associated with the Rift Valley fever: a single center study
https://pubmed.ncbi.nlm.nih.gov/19861868/
2d Kidney Transplant
Sejal had her second kidney transplant at Mayos Arizona on November 4th, 2021. This transplant was from a deceased donor, who suffered from Acute Kidney Injury, and therefore would require a little dialysis after transplant to get the kidney to wake up and function properly. After the transplant, she did have dialysis with a catheter 5 times. Her creatinine level has improved to 1.2. Two weeks ago, she returned to work.
Professional Studies Experiences
Dr. Patel spoke to us about several of the on-going studies she is involved with:
Freedom-1 Study – Talaris (Active):
The goal of this study is with living kidney transplants, to eliminate the use of immunosuppressive medications after 1 yr of transplant. It will require the donor to donate stem cells.
Freedom-1 Clinical Trial for Kidney Transplant Patients
https://youtu.be/SxJhxrfxOd8
This is a research study to test a new investigational product called FCR001, a stem cell-based product that comes from cells collected from the kidney donor’s blood and is infused into a kidney transplant recipient who has been assigned to receive FCR001. Primary objective is to evaluate the proportion of FCR001 recipients (FCR-R) who are free from IS, (immunosuppressive medications) without biopsy-proven acute rejection (BPAR), at 24 months post-transplant.
This is a new study of an experimental medication, designed to prevent rejection in kidney transplant recipients.
Antibody Mediated Rejection (AMR) Study – Hansa (Active):
The aims of treatment are to preserve renal function, reduce histological injury, and reduce the titer of donor-specific antibody (To prevent kidney rejection after transplant)
The purpose of this research is to learn if an experimental drug, imlifidase, is better at treating kidney graft rejection caused by antibodies than the standard of care treatment, plasma exchange. The primary endpoint of this study is: Maximum reduction in mean DSA levels at any time point during the 5 days following the start of treatment.
• A Randomized, Open-Label, Multi-Centre, Active Control Study Investigating the Efficacy and Safety of Imlifidase in Eliminating Donor Specific Anti-HLA Antibodies in the Treatment of Active Antibody-Mediated Rejection in Kidney Transplant Patients
An Efficacy and Safety Study of Imlifidase in Treatment of Antibody-Mediated Rejection in Kidney Transplant Patients
https://clinicaltrials.gov/ct2/show/NCT03897205;
Recommended Treatment for Antibody-mediated Rejection After Kidney Transplantation: The 2019 Expert Consensus From the Transplantion Society Working Group
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7176344/
• SIMPLE study- The purpose of this research is to learn if taking once a day tacrolimus extended release (Envarsus XR®) increases medication compliance, reduces transplant and medication side effects, and increases quality of life, as compared to tacrolimus twice daily immediate release
(The affect of lowering the dosage of Tacrolimus to 1x/day)
• A Prospective, Observational, Multicenter, Open-Label, Pilot Study to Investigate Medication Adherence and Patient Reported Symptom Occurrence and Interference with Daily Life Comparing Once-Daily Envarsus XR® and Twice-Daily Immediate Release Tacrolimus in Adult Renal Transplant Recipients
This study is completed for enrollment and we are just in follow up phase with the patients and completing data entry so we can look at the outcome when all the information is completed.
A Simple Novel Technique to Estimate Tacrolimus Dosages During the Early Post Kidney Transplantation Period
https://pubmed.ncbi.nlm.nih.gov/26518946/;
Envarsus XR Compared to Immediate Release Tacrolimus (SIMPLE)
https://clinicaltrials.gov/ct2/show/NCT03979365;
Imagine Study -
(To Prevent Kidney Transplant Rejection in diseases like FSGS)
This study is being carried out to see if the investigational product C1-esterase inhibitor (C1- INH) is effective in treating AMR, and if so, how it compares with the standard treatment. C1- INH is a natural protein found in your blood, and it helps control the immune system. A C1- INH medication called Berinert has been approved for patients who are missing the protein and have an inherited disease called hereditary angioedema (HAE).
A Double-blind, Randomized-withdrawal, Placebo-controlled Study to Evaluate the Efficacy and Safety of Human Plasma-derived C1-esterase Inhibitor as add-on to Standard of Care for the Treatment of Refractory Antibody Mediated Rejection in Adult Renal Transplant Recipients
Antibody-Mediated Rejection: A Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5349636/;
Recommended Treatment for Antibody-mediated Rejection After Kidney Transplantation: The 2019 Expert Consensus From the Transplantion Society Working Group
https://journals.lww.com/transplantjournal/fulltext/2020/05000/recommended_treatment_for_antibody_mediated.11.aspx;
Efficacy and Safety of Human Plasma-derived C1-esterase Inhibitor as add-on to Standard of Care for the Treatment of Refractory Antibody Mediated Rejection (AMR) in Adult Renal Transplant Recipients
https://clinicaltrials.gov/ct2/show/NCT03221842;
The Role of Genetics and Socioeconomic Factors in Outcomes After Kidney Transplantation in Hispanics and American Indians
The purpose of this research is to develop tools to assess socioeconomic risk factors and to identify genes associated with transplant outcomes in Hispanics and American Indians. A better understanding of these factors will help guide management and improve future outcomes.
Ethnic advantages in kidney transplant outcomes: the Hispanic Paradox at work?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2721429/;
Association of Race and Ethnicity With Live Donor Kidney Transplantation in the United States From 1995 to 2014
https://jamanetwork.com/journals/jama/fullarticle/2667722.
She hopes that the news of the studies, "reaches transplant patients that may be interested and they can reach out to mayo if it helps any of them."
When I asked Dr. Patel why she does research work, she answered, "We're hoping to find better treatment, I really like the fact that we are hoping to improve their [Kidney Patients] lives."
Future Projects
Dr. Patel did mention one future project that is in the works dealing with COVID-19 and the Kidney Transplant Population. Some kidney transplant patients on immunosuppressive medications, despite taking the vaccine are not getting sufficient antibodies to ward off the COVID-19 variants. One study is about what must be done so transplant patients on immunosuppressants can develop the necessary antibodies to protect them from the virus.
Dr. Patel noted that the study is NOT ready to go yet, and members of the public cannot apply at this time.
She also hopes that new studies in cardiovascular issues will be helpful to patients under her new responsibilities.
Conclusion
Dr. Patel was very candid about her Kidney Story from diagnosis to kidney transplant. Her insights into her work were particularly insightful. This was a special conversation from a special physician and Kidney Patient!
Dr Sejal Patel CV
Sejal R. Patel
Innovative medical research professional with experience in the academic, pharmaceutical and biotech industries. Well versed in pre-clinical and clinical research, compliance and regulatory affairs. Sejal possesses a solid grounding in clinical, medical and pharmaceutical science with the ability to rapidly assimilate specific and detailed information driven by a willingness to acquire knowledge in new areas very quickly. Sejal is a Clinical Research Professional and currently a certified member of SoCRA. In addition to her medical expertise, she also has a strong interest in health informatics, management, leadership, quality improvement and operational skills.
HIGHLIGHTED SKILLS
• Extensive medical knowledge and training in medicine, clinical trials, health economic outcomes research, investigator-initiated sponsor trials, and company sponsored trial management
• Excellent therapeutic area knowledge in Transplant Medicine, Nephrology, and General Medicine.
• Able to demonstrate extensive experience, scientific acumen and strong communication skills
• Excellent communication skills; Highly articulate and persuasive during formal and informal presentations; able to synthesize complex, scientific ideas fluently to any audience
• Follows all internal policies and functions as scientific and clinical expert on current and future Pharm products in the area relevant to internal and external customers
• 8+ years of clinical and research experience in the areas of Psychiatry, Pediatric Solid and Liquid Tumors, Rare disease, Solid Organ and Bone Marrow Transplant Medicine, Diabetes, Immunology, Infectious Disease, Orthopedics, Transfusion medicine, Transplantation, Gastroenterology, Rheumatology, Cosmetic Science, Dermatology, and Ophthalmology.
PROFESSIONAL HISTORY
Mayo Clinic Hospital November 2018- Present
Clinical Studies Unit/Multi-Disciplinary Transplant Research
Certified Clinical Research Coordinator
• Independently coordinates complex (i.e. interventional, therapeutic greater than minimal risk) clinical research protocols with minimal direction from the principal investigator and/or supervisor in compliance with regulatory laws and institutional guidelines
• Collaborates with research team to assess feasibility and management of research protocols
• Ensures implementation of research protocols after IRB approval and provides information as appropriate
• Screens, enrolls, and recruits research participants
• Coordinates schedules and monitors research activities and subject participation
• Identifies, reviews, and reports adverse events, protocol deviations, and other unanticipated problems
• Manages, monitors, and reports research data to maintain quality and compliance
• Provides education/training for others within the department
• Performs administrative and regulatory duties related to the study as appropriate
• Manage Protocol Development and Maintenance Activities Responsibilities may include, but are not limited to: ongoing management of the protocol document and process through editing, amendments, proofing, coordination of study logistics (i.e. blood collection kits, data collection booklets, use of CRU, etc.), and verification of content to meet institutional and federal standards
• Communication with study sites and/or federal agencies regarding study status changes
• Federal and Institutional Review Board (IRB) document preparation and submission
• Provides consultative expertise regarding regulatory and policy requirements
• Accurately applies investigators' scientific data into a cohesive format for the protocol document and associated procedures that are consistent with internal and external policies and regulatory requirements
• Participates in other protocol development activities and executes other assignments as needed
Clinical Fastrack May 2019- Present
Clinical Affairs Instructor
• Instructs and provides foundational and advanced role-based training for clinical research coordinators
• The course covers information that expands beyond but is directly connected to the Human Subjects Research (HSR) and Good Clinical Practice (GCP) practices
• Responsible for delivering basic clinical research coordinator training that organizations may use for onboarding new CRCs
• Included are the operational and regulatory essentials that clinical research coordinators need
• Also responsible for providing a basis for learners who will later move on to the advanced course
• In the course, I was required to give a deeper understanding of the clinical research coordinators role by exploring key operational, leadership, regulatory, and technical elements
Phoenix Children's Hospital January 2014- November 2018
Site Lead Clinical Research Coordinator- Phase I/II Oncology Studies
• Independently coordinated and was accountable for the overall administration of one or more clinical studies, typically requiring advanced-level knowledge and skills
• Responsible for coordination of a variety of research projects from pre-study implementation through study closure and works independently in the acquisition of specimens
• Managed the extraction and entry of patient data, maintenance of complete and accurate subject data, regulatory documentation, and analysis of data per protocol
• Responsible for assisting physicians with management of blood component and coagulation factor therapy in hematology transfusion medicine research trials
• Additionally, provided administrative / regulatory support (recruiting, interviewing and scheduling study participants, processing IRB and other regulatory documents) to specific clinical departments
• Provided mentorship and training to lower-level clinical research staff and/or support personnel, worked on departmental projects, and contributed to change implementation in the department
• Also involved in presenting clinical cases and problems in immunohematology and serving as an assistant to attending physicians regarding the choice of the best blood/ blood component therapy for their patients
• Attended investigator meetings and conferences as needed
Clinical Research Coordinator (Children's Oncology Group) January 2017- January 2018
• Assisted in the coordination of various research projects and supports the principal investigator and other clinical research support staff in the acquisition of specimens and extraction of data from patient charts
• Responsible for providing administrative / regulatory support by recruiting, scheduling study participants, processing IRB and other regulatory documents as needed in accordance with federal, state and regulatory agency requirements and specific institutional requirements
• Hematology/Oncology/Bone marrow transfusion study protocol submission to IRB
• Consenting potential subjects/participants for research studies: Working with Children's Oncology Group
Clinical Research Associate (Gastroenterology/Rheumatology Studies) October 2015- January 2017
• Maintained coordination of various research projects and supports the principal investigator and other clinical research support staff in the acquisition of specimens and extraction of data from patient charts
• Provided administrative /regulatory support by recruiting, scheduling study participants, processing IRB and other regulatory documents as needed in accordance with federal, state and regulatory agency requirements and specific institutional requirements
• Study protocol submission to IRB
• Consenting potential subjects/participants for research studies
• Worked with quality improvement network registry studies such as ImproveCareNow and PR COIN
Bioscreen Clinical Services February 2013- October 2015
Clinical Project Manager/Trial Liaison
• Planned, developed and managed the safety and efficacy of research studies
• Supervised Research Assistants and other support staff in carrying out research studies according to protocol. Worked closely with VP of clinical services and/or other Principal Investigators to ensure the research studies are conducted under company SOP's and Good Clinical Practice guidelines
• Participated in and coordinated the planning, development and implementation of study protocols, logistical procedures, and operating systems
• Generated study protocols, interim reports, and final reports for study sponsors
• Responsible for collection, interpretation of data results, and analyzing data
• Responsible for serving as a Sub-investigator in dermatology and ophthalmology grading and testing for safety and tolerance
Bioscreen Clinical Services January 2011- February 2013
Consulting Investigator
• Acted as a conduit of information about new research developments, clinical trial activities and therapeutic approaches
• Responsible for cultivating and maintaining relationships with academic researchers and leaders, attending conferences and talks, presenting information to pharmaceutical product teams and marketing new therapeutic products to physicians and other healthcare professionals
Mayo Clinic May 2011- May 2012
Postdoctoral Research Trainee-Nephrology/Transplant Medicine
• Employed a broad knowledge of principles, practices, and procedures in Nephrology and transplant medicine to plan, design, and conduct research/ present findings
• Carried out complex assignments requiring the development of new or improved techniques
• Responsible for action involving a liaison capacity with various department, divisions, and organizations
Educational Experience
MD, Medical University of Silesia Katowice, Poland 2002-2006
ECFMG Board Certified
BS, Psychology, Pre-Medicine University of Arizona Tucson, AZ 1999-2001
University of Kansas Lawrence, KS 1997-1999
Affiliations
Donate Life Arizona volunteer (2015 - present)
Society of Clinical Research Associate member- SoCRA certified CCRP (2020-present)
UNOS/OPTN Patient Affairs Ambassador and Committee Member (2021-present)
Medical Science Liaison Society member (2014-present)
Feed the Starving Children volunteer (2018-present)
ASU Stem Summer Research Experience Judge (May 2019)
Mayo Employee Resource Group member (eMerging Leaders, GLOW, American Asian)
Clinical Practice, Interests, And Accomplishments
• Pediatric Oncology, Solid Organ Transplant Research, Nephrology Research, Gastroenterology Research, Rheumatology Research, Immunology Research, Infectious Disease Research, Endocrinology Research, Rare Disease Research- Langerhans Cell Histiocytosis
• Interests in Biomedical Research, Clinical Informatics, STEM
Saturday, January 15, 2022
Dr Sejal Patel Broadcast
Missed the Dr Patel Broadcast?
Check Out The Instant Replay Herehttps://m.facebook.com/story.php?story_fbid=497914464999895&id=100043440381744
Sunday, January 9, 2022
New FB Group Kidneys and Insomnia
Brand New Group I Just Created, Kidneys and Insomnia. If you have Kidney Disease or Had a Kidney Transplant, Do You Have Difficulty Sleeping At Night? Check Out Our New FB Group
https://www.facebook.com/groups/960584261539524/?ref=share
Saturday, January 8, 2022
AAKP BOD BIO
JAMES W. MYERS IIICHAIR OF STRATEGIC COMMUNICATIONS COMMITTEE, AAKP FIELD AMBASSADOR
My name is James Myers. I live in Hammond, Indiana. I graduated from Valparaiso University Law School and I have 2 MBA’s in Business and Healthcare Administration. Polycystic Kidney Disease runs in my family. I’ve lost 5 members of my family to PKD, Including my Father. I have PKD. I was fortunate. Because of my family’s history, I was diagnosed at the age of 25, and was able to put off dialysis until the age of 58. I was on dialysis for 4 years and was transplanted on April 27th, 2016. I named my new kidney Woody. Woodrow is a family name, so I did this to honor my father and my grandfather.
I am a full-time kidney advocate. I am a member of the AAKP. I hold leadership positions with the AAKP as a Member of the Board of Directors, an Ambassador for the State of Indiana. I have won several professional awards and honors including the Inaugural National Social Media Education and Advocacy Award from the AAKP and Robert Felter Memorial Award. I have been fortunate to give multiple seminars for the AAKP on Social Media and Kidney Disease and have been a Breakout Session Leader concerning the use of Social Media to advocate/raise awareness for kidney disease as well as a presentation about Facebook and it’s use to advocate for my fellow kidney patients. I helped to initiate the Pediatric Kidney Patients initiative (Kidney Pals), and I am part of the initiative for Kidneys and Veterans. I am the Chairman, Strategic Communications Committee, and a Member, 2019 National Patient Meeting Committee (Awarded).
I am an Advocate for the National Kidney Foundation. In 2019, I was named the Advocate of the Year. For the NKF, I am a Statewide Advocate for the State of Indiana, Member of the Kidney Advocacy Committee, Leader of the KAC Social Media Group and a Regional Leader of Region #5(MI, OH, IN, KY, TN). I was influential in bringing about the NKF’s Pediatric Kidney Patient Initiative. I am an Ambassador for the AAKP, the Polycystic Kidney Disease Foundation, the Dialysis Patient Citizens, the Renal Support Network, the National Kidney Foundation of Indiana, More Than Just Your Kidneys and Waitlist Zero.
I am a frequent speaker at the NKFI Kidney Walks in Merrillville, Indiana and Indianapolis, Indiana. I am a frequent traveler and speaker for kidney patients, including stops in 2018 at Boston, Kansas City, Washington, D.C., St. Petersburg, San Francisco and Kidney Week in San Diego.
My specialty as an Advocate is my ability to utilize social media to help my fellow kidney patients and to raise awareness of the plights of the kidney patient. I am an administrator for 80+ kidney pages on Facebook, another 50+ Kidney Groups of various topics, 10 blog pages and 9 e-newspapers. I am a very experienced advocate both at home and on the hill with my Members of Congress.
My advocate nickname is Uncle Jim. If you have a kidney question or issue you need help with, please do not hesitate to contact me at kidneystories@hotmail.com. I thank the AAKP for all the opportunities they have given to me.
•
Brett B Ashley Broadcast
Missed the Brett B. Ashley Broadcast? Check Out the Instant Replay Here!
https://fb.watch/apeCsI74yq/
Friday, January 7, 2022
NKF Post and Letter in Support of Indiana SB 95 The Living Donor Protection Act
Thank you, Indiana Senate Insurance and Financial Institutions Committee for passing #SB95, legislation to enact #LivingDonor protections in Indiana. The full IN Senate must vote on and pass this bill! Contact your legislators here: #MyKidneyVoice
Support Indiana’s Living Donor Protection Act (SB 95)
On January 5th, the Senate Insurance and Financial Institutions Committee, with advocates of the National Kidney Foundation testifying, passed the Living Donor Protection Act (SB 95) to help living organ donors, people we consider heroes. Now we need to ask the full Senate to vote on and pass this bill!
The bill would ensure that life, long-term care, or disability insurers will not discriminate against living organ donors through policy conditions, acceptance, or pricing based solely on the person’s status as a living organ donor.
The National Kidney Foundation, organ donors and kidney patients across the state need you to help us pass this legislation. Please write your state senator and ask them to support this legislation to protect organ donors.
https://voices.kidney.org/indianaldpa/
