Tim's kidney transplant journey

05/20/2026

Edit: one precancerous, one squamous cell, one invasive basosqamous that will need a Moh's procedure. Could have e been worse. This is a wake up call.

Did you know that taking anti rejection medication makes someone 60-100 times more susceptible to skin cancer? I am living this statistic. Three biopsies taken: scalp, cheek and sideburn. Hoping for a positive outcome.

Organ transplant recipients have a high risk of developing skin cancer. Learn about precautions to take and the importance of regular skin exams.

03/12/2026

Today is Tim's birthday! He is not on FB, but is on Messenger.
Happy birthday, Tim 🎂 🥳🎁🎊

03/06/2026

Tim is taking a big step today and is having his fistula tied off. This will allow him to do normal things with his left arm again, and in the long term, avoids excessive strain on his heart. In case you are interested, this more about what happens.

Irregular connections between arteries and veins may cause certain complications. Learn more about the causes and possible treatment options.

02/28/2026

Protections for living donors could be soon codified into law.
The main tenets of the proposed legislation:
1) Prohibiting life, disability, and long-term care insurance companies from denying or limiting coverage and from charging higher premiums for living organ donors;
2) Amending the Family and Medical Leave Act of 1993 to specifically include living organ donation as a serious health condition for private and civil service employees; and
3) Directing the U.S. Department of Health and Human Services (HHS) to update its materials on live organ donation to reflect these new protections and encourage more individuals to consider donating an organ.

The Living Donor Protection Act (LDPA) has moved forward! Thank you to the Senate HELP Committee for voting to advance this important legislation. We look forward to its consideration and passage by the full Senate in the coming months.

The LDPA has been a consistent priority of the Foundation in recent years, and we’re incredibly encouraged to see meaningful progress on this bipartisan, common-sense reform.

Next week, PKD Foundation advocates will meet with congressional offices to urge passage of the bill before the end of the session.

This progress is possible because of supporters like you. If you’d like to help power our advocacy efforts, consider making a gift today: pkdcure.org/give

02/10/2026

Potential new anti-rejection regimen. https://www.facebook.com/share/p/1BnA5PF3H6/

A small but intriguing transplant study is exploring a new way to prevent rejection without the usual daily high toxicity drugs.
In a phase 2a trial published in the American Journal of Transplantation and reported by Medscape, researchers tested a dual biologic regimen of dazodalibep plus belatacept as the main long term anti rejection therapy after kidney transplant. The goal is to reduce reliance on calcineurin inhibitors and steroids, which work well but carry long term risks and side effects.
In 23 kidney transplant recipients, the regimen was generally safe, preserved kidney function, and showed no cases of antibody mediated rejection. Even when rejection occurred, kidney function recovered after standard rescue treatment. Patient and graft survival were 100 percent at one year.
This is early phase research and the study was small, but it points toward a future where transplant patients may rely on more targeted biologic therapies with fewer toxic effects and potentially better long term adherence.

Kidney transplantation science keeps moving forward. 💚

12/18/2025

https://www.facebook.com/share/p/1Sw7EMViFh/

Scientists at UC Santa Barbara have engineered a new antibody that can slip inside kidney cysts and shut down the growth signals that drive polycystic kidney disease.
PKD causes fluid filled cysts to grow relentlessly inside the kidneys, often leading to pain, loss of function, and eventually dialysis. Until now, one of the biggest challenges has been getting treatments into the cysts themselves, where the disease is actively fueling its own growth.
This new approach uses a specially designed antibody that can cross epithelial layers, reach the cyst interior, and block key growth receptors. In early studies, it selectively triggered cell death in cyst cells while sparing healthy kidney tissue, with no significant side effects observed.
Even more encouraging, the antibody stayed inside the cysts and reduced the signals that tell them to keep expanding. This is still preclinical research, but it represents a powerful new strategy that goes beyond slowing disease and starts aiming at stopping cyst growth at its source.
Published in Cell Reports Medicine, this work reinforces why continued kidney research matters. Progress happens step by step, and each step brings us closer to better treatments and better lives for patients living with Polycystic Kidney Disease.
ART:

12/12/2025

Tomorrow is the two year anniversary of Tim's transplant. The night before, we got our first ever organ offer call. They gave us twenty minutes to decide. We said yes and our lives were changed for the better. Tim's in great health, training to join the Transplant Games at some point, not sure when. He is also coming to terms with not being as young as he feels and being kind to himself. The little beans are 2 years older than they were in the small child who's parents decided to turn their tragedy into blessings. We think about that family often and wish nothing but the best for them. We are so grateful.

P.S..we were sharing that beer. We are both drinking less than we used to; part of protecting his gift.