The Lore
Hi. I'm Lex. I have this really cool trick where my kidneys
decided to aggressively retire early, so now I need a new one.
The statistical odds of me being both O+ AND needing a kidney puts me
on the very far edge of two bell
curves. We're trying to pull me back to the center before I fall off the graph.
Yes, I know I'm basically a statistical anomaly.
Understanding Alport's (The "Triple Threat")
Alport syndrome is a rare genetic disorder characterized by progressive kidney
disease, hearing loss, and eye abnormalities. It is caused by mutations in the genes responsible for
producing type IV collagen, a crucial structural protein in the kidneys, ears, and eyes.
See no evil
Collagen defects lead to eye abnormalities, shape changes in the
lens, and early cataracts.
Hear no evil
Progressive sensorineural hearing loss usually begins in late
childhood or early adolescence.
Filter no evil
The kidneys' filters (glomeruli) slowly scar over time, eventually
leading to end-stage renal failure.
While a kidney transplant completely replaces the failing renal function and cures
the kidney-related aspects of the disease (as the new kidney will have healthy collagen), it does not
reverse the existing hearing or vision loss. However, a successful transplant dramatically improves
energy levels, stops the need for dialysis, and restores overall physical health.
Frequently Asked Questions
Can someone live normally with one kidney?
Usually, yes. After donation, the remaining kidney enlarges slightly and takes over the work of the original pair. Most donors maintain good long-term health and normal life expectancy.
What are the risks of donation surgery?
Major complications are uncommon, but it is major surgery. The surgical mortality rate is around 3.1 in 10,000 donors. Long-term, there is a slightly higher risk of high blood pressure and kidney failure compared to equally healthy non-donors.
What is the recovery like?
Most surgeries are laparoscopic (keyhole). The hospital stay is usually 1 to 4 days, with many donors returning to work in 3 to 6 weeks. Physical quality of life usually returns to baseline by six months.
Who pays for the evaluation and surgery?
The recipient's insurance generally covers the donor's medical evaluation, testing, and surgery. Donors who donate through the NKR in the United States are also typically covered by Donor Shield for lost wages, travel, and lodging. If you live outside the U.S., see the international donor questions below—International Donor Shield travel reimbursements differ, and lost wages are not included in that pilot program.
What if we aren't a match?
I am blood type O+, which means I can only receive an O kidney. (For kidney transplants, ABO blood type matters; the Rh “+” or “−” does not.) Even if we aren't a direct match, you can still help me through the Paired Kidney Exchange program. Your donation would go to someone you match with, and in return, I would receive a kidney from a matching donor. Learn more from the OPTN living donation overview.
Can I donate if I live outside the United States?
Yes. International donor candidates can register with the National Kidney Registry, but you must travel to the United States for the full medical evaluation and donation surgery at an NKR Member Center. You can start through my NKR page at nkr.org/ENZ362. See the NKR guide for international donors.
What financial help exists for international donors?
Through a Donor Care Network center, eligible international donors may use International Donor Shield, a pilot program that reimburses donation-related travel. Current policy allows up to $3,000 for the in-person U.S. evaluation trip and up to $6,000 for the donation and recovery trip (the donation trip may also cover an accompanying caregiver). Receipts are required, and lost wage reimbursement is not included in the international pilot—amounts and rules can change, so check the current International Donor Shield policy and the NKR overview.
What testing happens before I travel to the U.S.?
Before traveling, international donor candidates usually complete preliminary blood and urine tests in their home country, coordinated by the U.S. transplant center. Those early tests are typically paid locally (out of pocket or through local insurance); in some cases the recipient's family may help with those costs. If the results support continuing, the center invites you to the U.S. for the full in-person workup.
Do I need a visa to donate in the United States?
Many international donors need a U.S. visa. Check requirements on the U.S. Department of State travel site. If a visa is required, the transplant center can often provide an official support letter for a humanitarian-style visa application at a U.S. embassy or consulate. The visa process itself is between you and the government authorities; the center supports with documentation when appropriate. More detail is in the NKR international donor post.