On August 16, 2023, I celebrated my 1-year kidney transplant anniversary. My CKD was due to AA amyloidosis disease, which I was diagnosed with in March 2012 at 50 years. While searching for a local hospital to get on the transplant list, I was told that my eligibility for a transplant was unlikely because of my AA amyloidosis. Therefore, when I was waitlisted in July 2017, I also agreed to consider a high-risk kidney. In December 2018, my GFR dropped to 11%, and my nephrologist decided it was time for me to begin dialysis. I chose peritoneal dialysis, which I began on March 4, 2019.

I waited patiently for 5 years on the transplant list. In August 2022, a kidney was offered to me that was considered high risk due to having been exposed to hepatitis C and HIV. My surgeon and the kidney transplant team suggested that I consider this kidney because “I was a perfect match.” I immediately agreed to accept the kidney, and the rest is history!

In reviewing the article, “Physician Preferences when Selecting Candidates for Lower-Quality Kidney Offers,” published in this issue of CJASN,1 I found it interesting how the Kidney Donor Profile Index (KDPI) was calculated, and I was amazed that so many kidneys are not transplanted under a KDPI of >85. My transplant team most likely did explain KDPI to me when I signed a consent form to accept a high-risk kidney, but I do not believe I really understood exactly what it all meant. I think that the term “high risk” can be interpreted in so many ways, and once it is explained in detail, patients may feel more secure in accepting a high-risk kidney.

In reading the article, it made me grateful that these processes are in place. I wish there was a way to simplify it for us patients to understand and give us more information when making a choice for a high-risk transplant opportunity. Although I do not remember or did not understand KDPI in the detail that was needed, I know of other transplant recipients who did. I agree with the article's statement, “Finally, we recognize that organ acceptance decisions involve multiple stakeholders. However, physicians are a key decision maker in this process.”1 I would like to see how this could be taken one step further with a simplified standard explanation of the process and how it could be explained to a potential recipient. It makes sense that physicians also “seemed to favor patients who would likely have to wait longer for another organ offer.”1

Again, it was interesting to find out the process that physicians and surgeons use when evaluating a high-risk kidney that is a potential organ for donation. Thank you for providing this platform to share the patient perspective.

Today, my new kidney has provided me with new life-altering opportunities, such as travel. I have more energy and feel 100% healthier as I regain some of my independence that I had lost when I was on peritoneal dialysis.

Last week, I received a call from my post–kidney transplant coordinator who informed me that I had tested positive for a virus called cytomegalovirus (CMV), which is also known as human herpesvirus 5. I contracted the virus from my high-risk kidney and was aware that the organ had also been tested for this virus pretransplant, but I honestly did not know what CMV stood for and did not question it. I was told that CMV is common in patients receiving kidney transplant, and they are, therefore, continually tested for it, but it did not show up on my routine tests performed biweekly until September 23, 2023. I was instructed to immediately start taking the antiviral medication Valcyte, which I had taken for the first 6 months after my transplant, and prednisone to treat the symptoms for the next 6 months. The virus cannot be completely removed from my body, so I will have it for the rest of my life. At first, I was quite alarmed, but after reading up on CMV and becoming more informed, I am relieved that at least it is treatable with medication that can help relieve symptoms, although I have had none so far; prevent complications; and keep the virus from spreading.

Thank you for making such strides and your dedication to continued research to provide as many transplants as possible. Patients like me are eternally grateful.

Disclosures

The author has nothing to disclose.

Funding

None.

Acknowledgments

The content of this article reflects the personal experience and views of the author and should not be considered medical advice or recommendation. The content does not reflect the views or opinions of the American Society of Nephrology (ASN) or CJASN. Responsibility for the information and views expressed herein lies entirely with the author.

Author Contribution

Writing – original draft: Diana Kelly.

Reference 1. Gonzalez Sepulveda JM, Mehrotra S, Yang J-C, et al. Physician preferences when selecting candidates for lower-quality kidney offers. Clin J Am Soc Nephrol. 2023;18(12):1599–1609. doi:10.2215/CJN.0000000000000302