Lucy's Story
What happened to Lucy's kidneys?
Mysteriously, one day in April 2021 Lucy's hands started cramping and several days later her legs just totally collapsed out from under her. Bloodwork revealed a serious problem with her kidneys and she was immediately admitted to Mayo Clinic Hospital. For 8 days she received a barrage of tests and protocols to figure out what was happening. What caused this condition is still an unsolved mystery. Initially the hope was that her kidneys could slowly heal over time … but now because they are not healing like doctors thought they might, the diagnosis was changed to Acute Kidney Injury Resulting in Chronic Kidney Disease. She has good days and bad days, but she's in good spirits. She was eventually able to return to work, and is taking one day at a time. Lucy is 63 years “young.” She is hopeful, and determined to beat this. At this point her only two options are a kidney transplant or dialysis.
Why did she decide on a transplant?
She has chosen kidney transplantation because it offers a better quality and length of life than dialysis. If you know her, you already know what a zest for life this amazing and wonderful woman has! Especially now as a newlywed she wants to enjoy life, her family, and friends for as long as possible. Ironically, in 2018 Lucy helped brainstorm a Facebook page idea for our friend Alison who was searching for a living kidney donor. Never in our wildest dreams could we ever have imagined Lucy would be in the same boat herself 3 years later, but here we are. So we wanted to create this simple page for her in order to get the word out.
Since the impact of dialysis upon Lucy’s immune system and physical health would be severe, she and her doctors are hoping to avoid it. * (SEE UPDATES BELOW.) Dialysis performs some of the function of the kidneys and usually takes about 4 hours 3-4 times per week at a treatment center, and in some cases longer – up to 10-12 hours at home every day. As you can imagine, it is all-consuming -- sapping physical, mental, and emotional health. It compromises the immune system to the point where you’re highly susceptible to infections and highly at risk for other serious diseases. Even a simple cold can land you in the hospital and wreak havoc. End Stage Renal Disease means you will need to have dialysis treatments for the rest of your life, and your lifespan will be shorter than if you received a healthy kidney from transplantation. It is a struggle to stay alive as your body slowly degenerates. Machines just can’t do the job as well as organs can, and this mechanical process is not sustainable indefinitely. In contrast: on average, receiving a kidney transplant can double someone’s life expectancy!
Why is Lucy hoping for a living donor?
A compatible living donor is Lucy’s best chance to get a healthy kidney that will save her life. Some of the main benefits of living donors vs. deceased donors are: MUCH shorter wait time (months instead of years), fewer complications, better planning, and living-donor kidneys survive and function longer than deceased-donor kidneys.
So we are looking to find someone who might be interested in exploring applying to be a living donor by donating a kidney. Believe it or not, you can live and function quite normally with just one kidney, and the surgery is laparoscopic – minimally invasive. (All testing and medical costs will be covered by Lucy's insurance. Learn more on the Questions & Answers page.) If you Google these words: kidney donors would "do it all over again" (the quotation marks narrow down the search to that exact phrase), you'll be absolutely amazed at how many living donors wouldn't hesitate to donate again -- if only they had a third kidney!
Since Lucy has been in Stage 5 Kidney Failure since April 2021, she wants to get the word out to increase her chances of finding the most compatible living donor in the shortest amount of time. Some have applied, but no match has been found yet.
September 2022: Lucy began hemodialysis, traveling one hour each way to Mayo Clinic in Jacksonville, Florida to receive 3-hour dialysis treatments 3 times per week. A dialysis nurse connects the hemodialysis machine to Lucy's circulatory system by way of a special surgically installed port in her neck. The machine draws her blood out, filters it, and then returns it to her body.
December 2022: After a training period, Lucy switched to home Peritoneal Dialysis (PD). PD uses the lining of the abdomen, known as the peritoneum, as a natural filter. Through a special surgically installed port in her abdomen, Lucy connects a machine that flushes fluid through her peritoneal cavity to clean her blood. This process involves 10 hours of dialysis every night, overnight.
March 2024: Lucy will be switching to 4-hour home hemodialysis treatments in the near future, which requires a surgical procedure to join an artery and a vein in her left arm to create an access point that will handle the volume of blood needed for hemodialysis. This is called a Dialysis Fistula. It allows for high blood flow, which is essential for effective dialysis. Lucy will be undergoing 2 months of training to equip her to perform this process at home. 4 times per week, she will insert 2 needles into that vein (the fistula). One needle draws her blood out to pump it into the home hemodialysis machine for filtration, while the other needle returns the cleaned blood back into her bloodstream.
June 2024: Lucy had a balloon procedure to increase vascular flow in her arm.
August & September 2024: It was necessary for another fistula to be created in Lucy's right arm because ultrasound tests revealed there was not enough blood flow to support the hemodialysis process. This was a two-part surgical procedure, 6 weeks apart.
November 2024: The new fistula has fully healed and matured and there is good blood flow, so Lucy will begin her hemodialysis training at Mayo Clinic in early December.
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