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Author Topic: Why I chose to celebrate life by becoming a living kidney donor  (Read 674 times)

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https://www.statesman.com/story/news/2023/04/23/austin-dell-seton-medical-center-helps-living-kidney-donor-celebrate-life/70088592007/

Why I chose to celebrate life by becoming a living kidney donor

Nicole Villalpando

The clapping follows me as my hospital bed rolls through the hallways on the second floor at Dell Seton Medical Center on March 21. Nurses, technicians, doctors, therapists and hospital administrators line the path and clap for me as I make my way to the operating room.
We pause in a hallway for me to ring the Living Donor Bell. I get teary.
This is really happening. I am donating my left kidney to a person in Massachusetts I do not know.
I am taking one of the 96,066 people in the United States currently waiting for a kidney off the list. Last year, only 25,499 people nationally received a kidney transplant, about a fourth of the people who needed one. My kidney recipient will not be one of 13 people a day who die waiting for a kidney.
Checking the box
When I got my first driver's license on my 16th birthday, I checked "organ donor" on the application form. Why? If I died in car accident, I would want my organs to help somebody after I'm gone.
I knew you could give a kidney while still alive but thought you had to give it to a family member or someone you knew. My kidney had to stay in place for my family or future family in case they needed one, I thought.
Then I became a health reporter in January 2022. I covered the first kidney transplants at Dell Seton as it began a program to join an existing one at St. David's North Austin Medical Center. One of those first surgeries in February 2022 was a woman giving a kidney altruistically, meaning she did not know her donor. She signed up through the National Kidney Registry to be a donor and then was matched with someone who needed a kidney.
I was inspired and asked myself: Would I ever do that? Could I ever do that?
The National Kidney Registry is a nonprofit that facilitates living kidney donations. Often, it helps people who need a kidney but don't have a relative or friend who is a match. The recipient and willing donor begin what is called a chain, with each going through a review process until the right donor and recipient are matched. It can take several pairs of donors and recipients until everyone is matched.

In September, I covered a story of another altruistic donor who made his donation at St. David's North Austin Medical Center. He was the first person in Texas to be part of a pilot program from Donate Life America, a nonprofit that registers organ donors. Instead of clicking a box when you get your driver's license or renew your car registration to be an organ donor, you click a box online noting that you are interested in being a living kidney donor.
Through this donor, I learned about the voucher system. A living donor can name up to five people to receive a voucher should they need a kidney. These people would have priority for a kidney because their loved one had donated one and could no longer donate to them. Donors also are given priority if they should need a kidney in the future. The chance of that, though, for my gender and age, is 0.2% at the 20-year mark after donation.
My fear that I needed to keep my kidney in case my family needed one dissipated with the voucher system.
State Sen. Kelly Hancock, R-North Richland Hills, has introduced Senate Bill 1249 to establish a Living Donor Registry Education Program, which would build on the pilot program and make education available on the Department of Public Safety's website. Rep. Tom Oliverson. R-Cypress, filed the companion House Bill 2826. Hancock said he expects no opposition to the bill.
Hancock received a kidney last July from his son-in-law after being told seven years ago that his kidneys were failing. By the time of his transplant, Hancock's kidneys were down to about 10% function.
"It changed my life," he said of the transplant.
The need in Texas for kidneys far exceeds the available supply. At the beginning of April, 9,640 people were waiting for a kidney. Last year, 2,394 people in Texas received a kidney transplant.
"There are 28 million people in Texas. We could get everybody off the list," said Dr. Jacqueline Lappin, the former surgical director of the Kidney Transplant Center at St. David’s North Austin, citing the potential of the new online button to register people to become living kidney donors.
People wait an average of six years after they are listed for a kidney transplant, sometimes longer if they have a difficult blood type or unusual antibodies. The longer people wait for a kidney and are on dialysis, the less likely a candidate they are for a transplant, Lappin said, citing a decline in health.
In Texas last year, 650 kidney recipients had living donors.
Most transplanted kidneys last seven to 20 years. A living kidney donation lasts about twice as long as a donation from a deceased person because a deceased donor's kidney has been through a trauma. Kidneys from a living donor tend to work right away, Lappin said.
Inspired by that story, and to test whether the pilot program worked, I went online Sept. 19 and checked the box at donatelife.net that I was interested in being a living donor. On the online form, I had to choose between two centers in Austin: St. David's North Austin and Dell Seton. I chose Dell Seton because it was closer to my house, and I was familiar with the surgical team from past stories. The form told me that the transplant center would contact me. It did a month later.
Getting the email
On Oct. 19, I received a questionnaire email from the National Kidney Registry. I had to outline my medical history, my family's medical history and what medications I take.
More than 50% of potential kidney donors don't qualify, often due to medical history or because of the intense health screening process.
I thought my dad's kidney troubles due to diabetes might knock me out; or my preeclampsia while pregnant with my son, now 22; or my high blood pressure, controlled via medication since I was 27.
None disqualified me.
Then I received an email with lab orders on Oct. 26 to do preliminary testing and scheduled blood work and a urine sample.
I began to casually mention my desire to donate a kidney to my family, including my husband and both children.
No one thought this was a good idea.
"I don't like this at all," my dad said.
"No, you're not," my daughter told me.
My mom, calling it "noble" and knowing I would do whatever I wanted, said she was concerned for my health.
Once the process started, the National Kidney Registry connected me with a peer support specialist and an independent living donor advocate through the Living Bank. Their jobs are to answer my questions and verify that I was doing this for the right reasons, not being paid for my kidney or pressured into donating.
The next test
At this point, I was in touch with Katie Mooney, a registered nurse and the living transplant coordinator at the Abdominal Transplant Center at Dell Seton, a joint program of Ascension Seton and UT Health Austin at Dell Medical School.
I made sure she knew that I was the reporter at the Statesman who had been covering the new transplant program and that Dr. Nicole Turgeon, the transplant director, and the rest of the team knew my affiliation. If it was too weird for them, I'd back off. I assured them I wasn't in this for a story. I just wanted to help someone.
I passed the initial blood and urine tests.
The next step: wear a blood pressure monitor for 24 hours, strapped around my waist with a cuff attached to my left arm. Every 15 to 20 minutes the cuff would inflate and take a reading. Sleeping was difficult. The only time I could take it off was to shower.
My blood pressure was fine. Another test passed.
The big workup
At the Statesman, I run the Season for Caring nonprofit program to help local nonprofit organizations and families with basic needs. My Decembers are a marathon of stories and coordination. When Mooney called to schedule my daylong workup in December, I knew I needed to put it off until the beginning of January. Being an altruistic donor means you get to set the timetable.
On Jan. 3, I walked into the Abdominal Transplant Center to spend half a day with the staff before being sent to Dell Seton across 15th Street for scans. It was a long day. I arrived at 8 a.m. and left around 4 p.m.
Mooney took more blood: 15 vials of it, and more urine.
One by one, therapists and doctors came in to ask questions about my life and talk about the risks of donating.
"There is no benefit to the donor," they repeatedly reminded me.
While done laparoscopically, the surgery would leave me with three tiny incisions on my left side and a larger incision below my bellybutton. They could become infected. I could need a blood transfusion. I could throw a blood clot that could go to my heart, lungs or brain. The risk is death, like any surgery.

Plus, no lifting anything heavier than 10 pounds for six weeks to avoid a hernia.
I met with a dietitian who let me know I would need to watch my protein intake. Too much protein could damage my remaining kidney because the kidneys filter protein.
The pharmacist went over my medication and let me know that I would need to avoid taking nonsteroidal anti-inflammatory drugs such as Advil for the rest of my life to protect my one kidney and liver. I could not take new medications including supplements without consulting the team about any impact to my kidney.
I met Dr. Brian Lee, a nephrologist, who talked about my medical care postsurgery and the risk of developing higher blood pressure in my case.
My remaining kidney, though, would grow in size, and instead of doing 50% of the work with two healthy kidneys, it would do 80% of the work. I would never get back to 100%.
I met with a psychologist to discuss my reasons for giving. I told her that not only was I thinking about the person on the other end who would be healthier because of me, but I saw this as a celebration of my health. Seven years ago, I lost 50 pounds, started exercising, got my high cholesterol into a healthy range and worked on improving my blood pressure. I accomplished that.
Now, turning 50 this year, I thought of giving a kidney as my birthday present to myself.
The psychologist wanted to ensure that I would have support at home from my family during my recovery.
I also met with a financial counselor. All the surgery costs, the presurgery workups and postsurgery care are covered by the recipient's insurance. I've seen only one bill, for $167, accidentally. I was instructed to send that to the financial counselor to have it billed correctly.
The counselor also informed me of programs to help offset loss of wages. Because I have paid time off, I would not need that help.
My next step was to go to the lower level of Dell Seton to get a chest X-ray, a CT scan with contrast and an ultrasound of my heart.
As a health reporter, I do a lot of stories about people who go in for a simple X-ray for a broken bone and find out they have cancer. I was convinced the scans would reveal something bad. They did not.
So many bodily fluids
My next step was to spend 24 hours collecting my urine into a large canister that looked suspiciously like an orange juice jug. I then had to bring that jug to the transplant clinic immediately.
By this point, with my son home from college, I told him of my intention to give a kidney. "Your body, your choice," was his response. He's kind of a matter-of-fact kid.
When Mooney called me Jan. 13 to tell me that all of my tests looked good, I was in disbelief.
Finally on Feb. 7, the transplant team — the surgeons, nephrologists, psychologist, dietitian, pharmacist and transplant coordinator — met to discuss my medical records and candidacy to be a living donor.
When Mooney called me the next day to say I was approved, I grinned ear-to-ear.
I had a choice of when to be listed. But once listed, I needed to have at least a three-week window of availability for surgery. I decided to get listed immediately.
There was still more paperwork. I had to sign a form with the National Kidney Registry that I understood how the voucher program worked. I had to list my five people who I wanted to get a voucher. I chose both children, my husband and my two brothers.
My chosen family members also had to file paperwork that they wanted to be part of the voucher program.
By this point, I had begun telling my employers and a few friends that I was going to be donating a kidney. The reaction was usually, "That's so cool!" followed by, "Are you sure you want to do this?" followed by, "What does your family think?" followed by, "Who is it going to?"
Getting listed
I became listed for donation Feb. 21. Mooney expected my kidney would go fast because my blood type is O-positive. This is the hardest blood type to find a kidney for because even though O-positive people are universal donors, they can receive only O-positive blood and organs. In the U.S., of the 96,066 people waiting for a kidney, 52,376 are Type O. In Texas, 5,767 people are waiting for a Type O kidney of the 9,640 people on the list.

Locally, the "vast majority" of people waiting for a kidney transplant are Type O, Turgeon said, and they have the longest waiting time. "We need a lot of O's," she said.
Getting a kidney for people who are Type O who also have a lot of antibodies is "like a needle in a haystack to find," she said.
For me, this scarcity of Type O organs was another reason to give the kidney now, while I'm healthy. All my family members and my husband are O-positive.
Making a match
Mooney called me Feb. 27. We had a match. The only thing she could tell me was that the recipient was in Massachusetts and we had a surgery date of March 21. Did I want to go ahead with this match? It was my choice.
I felt an almost overwhelming connection to this person immediately. I imagined what they and their family felt when they got the call. I just remember beaming and clapping and feeling overwhelmingly happy.
A friend who donated a kidney in October on behalf of her husband who was O-positive, and started a chain by donating, told me, "Someone right now is praying for you" — praying that my kidney would arrive on the registry and be a match for them.
I got teary just thinking about her family's struggle to find a kidney and the struggle of the person I was matched with. Our identities will be kept anonymous until both of us sign letters that we would like to contact each other.
I was listed for only six days, which "was very quick," Turgeon said. "That's a function of being a blood type O."
Prepping for surgery
That same friend gave me some good advice: Start doing abdominal exercises right now. So every night I did at least 15 minutes of ab work, which I did not grow to love.
On March 7, the phlebotomist returned to my house to take more blood — 12 fat vials this time. Some of it went to the Massachusetts hospital where the recipient would have the transplant. The rest went to a lab in California.
Again I got a phone call from an independent living donor advocate through the Living Bank to make sure I wasn't being paid or coerced into giving a kidney.
On March 16, I spent 2½ hours with the team at the Abdominal Transplant Center. More blood had to be taken to make sure my levels, particularly my creatine level, which is about kidney function, qualified for donation. My level had been 0.8 the first time and 0.7 another time, but once it was 1.0, which is normal but not good enough for me to give a kidney. It needed to be below 1.0.
I was convinced I would be knocked off. Even though I knew I could decide not to give at any point, I already felt responsible to this person to give them the healthiest kidney and not dash their hopes.
My number was 0.8.
I again met with the dietitian, the psychologist, a nephrologist and Turgeon.
She described the surgery in even more depth to me. I would be on my right side with my left side up. My abdomen would be pumped up with gas to create space to operate. Then she and fellow surgeon Dr. Joel Adler would carefully cut away the connective tissue using scissors that cauterize. They would lift up my bowels to move them out of the way to access my left kidney.
They would clamp off the renal artery, the vein and the ureter in my left kidney, all using laparoscopic tools. Then they would cut between the clips to disconnect them. Once everything was disconnected, she would grab my kidney with her hand and pull it through a 3-inch vertical incision below my bellybutton.
They would then prepare my kidney on a back table and take measurements and pictures of it. It would be flushed with saline to remove any blood. Then it would go in a plastic bag filled with saline and secured with a twist tie. The bag would go into a plastic container and be put in a garbage bag filled with ice. Everything goes into an insulated cardboard box.
The whole procedure would take about 90 minutes.
Because I had watched previous transplants, I didn't have a lot of questions, but somehow having her describe it and knowing it would be me on the table this time made me a little queasy.
Again and again, I was told I could back out at any time and no one would judge me.
Getting ready
My only presurgery instructions were to get lots of rest over the weekend.
That Monday, I also met with fellow kidney donors at a Donate Life event. They gave me great advice about my recovery: Wear your baggiest sweatpants, an oversized shirt and slip-on shoes to the hospital because you won't be able to fit in or want anything tight on your body after the surgery.
That night, I slept very little. It's like when you have to go to the airport for an early flight. You worry you'll oversleep so you don't sleep.
The day arrives
On March 21, I arrived at Dell Seton for the surgery. I was tired and excited but not scared. Really, I just wanted to get through to surgery. Turgeon had warned me that right up until surgery something could happen on either the donor side or the recipient side that would postpone it or disqualify me.
Even going through the motions of getting into the gown, answering an anesthesiologist's questions and giving more blood, I still had an underlying disbelief that it would happen.
And yet, I found myself being rolled through the hallways with clapping people lining the sides. Everyone thanked me for this gift, told me how amazing I was. For me, it felt like the right thing to do, the thing I was meant to do.
I rang the bell, arrived in the operating room and slid onto the table. It was 6:46 a.m., the clock on the wall said. And then I was sedated.
My kidney's next life
While I was sleeping, my kidney was boxed up with labels on it that said, "Living Donor Organ for Transplant" and "Handle with Care." Inside that box, along with my kidney, was a vial of my blood that would go to the center to make sure the recipient and I were still compatible. A GPS tracker was inserted for both centers to know exactly where that organ was at all times.
More of my blood will be stored for 10 years in case there is ever a problem with the donor or the recipient. There will be a record of my health at the time of donation.
The box was placed in the backseat of an organ recovery transport team SUV and driven to Dallas, where it was put on an American Airlines flight to Boston. Some airlines put organs in the cockpit; others put them in the cargo hold. Organs are given priority, but they don't have a person accompanying them. Think of them as an unaccompanied minor.
My organ arrived in Boston at 8:30 p.m. A kidney can stay outside the body for up to 36 hours, but the sooner the better, ideally within 24 hours.
The recipient received my kidney that night.
Turgeon later learned that everything had gone as planned with the recipient.
The day after I donated my kidney, the federal government announced a plan to overhaul the Organ Procurement and Transplantation Network. Some of the criticism is that the waiting list is too long and organs are having to travel too far, rather than staying close to the donor.
"We don't want to see the system dismantled," Turgeon said. "We want it improved."
She wants to see more funding to improve the technology and modernize the system. The goal is: "How can we get the kidney to the right patient all the time?"
For every possible transplant patient, she has to have the conversation about finding a living donor as their best bet for a kidney.
For people who give a kidney, the voucher system does elevate people on the list, and it makes sure that a donor's family members will be given priority in exchange for that donation.
Is all of this fair? I don't know, but I like to think my kidney went to the person in most need who matched me. It's also reassuring that my family will be prioritized because I gave this gift.
Recovering
When they woke me up and wheeled me to my room, I remember feeling as if I were on a roller coaster. I could hear my husband's voice asking the nurse something, but I was out of it. I just wanted to go back to sleep.
I didn't hurt, but I did have cramping from my side muscles where laparoscopic tools had been working. The nurse gave me a belly band — fabric that wrapped around my whole abdomen and held it in. That helped with the cramping. I wore it for about a week until my muscles improved. I was acutely aware that my abdominal muscles had taken a hit. I couldn't roll over or sit up, really.
Every six hours I got Tylenol, OxyContin if I needed it and Toradol.
That afternoon, the Abdominal Transplant Team came to visit. I was the 10th living donor for this program. They have done 12 transplants, and two pediatric transplants. They expect to be doing 75 transplants by year five, which is the same as what St. David's North Austin is doing.
The team at Dell Seton is also now approved to do pancreas transplants, which haven't been done in Austin. Liver transplants are expected to start in 2025 or 2026, which also will be a first for Austin.
To be able to go home, I had to eat something in the morning and get rid of the catheter. Then I had to show that I could urinate on my own, walk around safely and pass gas. If everything checked out, I could go home.
I passed those tests.
By 11:30 a.m. March 22, I was home.
Recovering at home
Here's what I discovered: I am a bad patient. I heard, "Take it easy," but I'm not good at that. I have followed the no-lifting rule, but it kills me every time I have to ask someone to carry this or hold that.
I started walking right away. That first day, I could barely make it to the mailbox halfway down the block and back. The next day, I made it to the end of the street. I added a quarter of a mile at a time until I had hit two miles twice a day. But I am tired all the time. Part of that is the surgery recovery and the anesthesia, but also my body is adjusting to one kidney. I need a daily nap.
At my two-week post-op visit, Turgeon declared that I was doing exceptionally well. My scars look amazing. My kidney is functioning well. We are watching my blood pressure because it has creeped up.
Not a day that goes by that I don't think of that person in Massachusetts who is living with my kidney. We are bonded forever. I wish them and their family only the best.
I have no regrets. Becoming a living donor has been such an honor.
How to become a living donor
You can contact a kidney transplant center directly at St. David's North Austin Medical Center or Dell Seton Medical Center, or you can go to donatelife.net.
Unrelated directed kidney donor in 2003, recipient and I both well.
618 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!

 

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