Friends turned family after a life saving gift, now they advocate for living organ donations

INDIANAPOLIS— Two mothers who were once friends are now family after a life changing gift.

Carlie Oakley and Jenny Deppen met between a mutual friend, but their friendship grew closer when their daughters started hanging out.

However, their friendship reached new heights when Deppen decided to donate her kidney to Oakley.

Oakley's kidney journey started when she was 16. She got bloodwork done, and the doctors noticed she had high creatinine levels.

After an ultrasound, doctors found she only had one kidney.

At 21, she contracted the Epstein–Barr virus.

"Which happens to be the type of mono that affects your kidney," Oakley said.

After that, she was required to have routine checkups with doctors every 6 weeks, for 23 years.

At 44-years-old she was told her kidney just wasn't working, it was functioning at only 20%. She needed a transplant.

"My kids are young, they're 12 and 13 and gosh they need a mom around, so that was my driving force in finding someone that could give me a kidney," Oakley said.

Oakley was put on the donation list, but knew she didn't have time to wait.

It took her three months to ask for help.

"To be able to put out there that I needed a kidney, felt very extreme. It didn't feel like asking for a babysitter on a Friday night," Oakley said.

Oakley fired off an email to 100 people, hoping just one would be willing to donate an organ.

The challenge was just beginning. Finding a match, especially a non-relative is challenging.

Several family and friends sprung at the opportunity to help, going through rigorous testing to see if they were a match.

Throughout the whole testing process, Deppen decided to stay anonymous.

"I knew that whole time who my donors were except for one and we kept calling that person ghost donor," Oakley said.

Deppen, "ghost donor," decided to wait to tell Oakley until she knew she was her match.

Oakley said Deppen told her over drinks one night.

"Why would you want to do this for me? She is putting her health at risk and I am just so honored that she would give her time and space and energy to give me such an amazing gift," Oakley said. "I have no words to say to you right now, thank you, I don't even know what to say."

The pair decided they would name the kidney, with the help of their kids. The kidney was named, "Oaken," a combination of their last names.

Both Oakley and Deppen are now advocates for living organ donation.

"I feel exactly the same as I did pre-surgery," Deppen said.

They hope more people will step up to give a gift that's hard to put into words.

"It gives more function than any brain dead organ transplant. It typically will last longer," Dr. Asif A. Sharfuddin, MD said.

The need for living donors is exponentially high. "There is a mismatch between the number of organ donors which are available from diseased organs compared to the number of people needing a transplant. So that makes everybody wait longer," Dr. Sharfuddin said.

The typical wait time on the organ donation list is 3 to 6 years.

"Kidney failure is a debilitating disease. The longer a person remains in kidney failure or dialysis, the more the condition keeps on deteriorating," Dr. Sharfuddin said.

There are currently more than 88,700 people in the country waiting for a kidney transplant.

In 2022, around 25,500 received a transplant, of which approximately 5,900 were living donor transplants.

In Indiana, there are currently 1,001 patients waiting for a kidney transplant.

In 2022, a total of 303 kidney transplants were performed in Indiana, of which only 54 were living donor transplant.

How does the living donor process work for those interested in finding if they could be a match for someone in Indiana? What's involved, how long does it take, etc.

Once an individual submits theirinformation online [iuhealth.org] to be considered as a potential living donor, a health screen is completed to make sure they are a suitable candidate.

Donor safety is the top priority, and the team works to provide support throughout the donation process. Before testing begins, potential donors are educated about their rights and the potential risks of living donation.

Blood type matching and tissue type (HLA matching) testing between the recipient and potential donor are required. The potential donor will undergo a careful and thorough evaluation process which includes multiple tests and consultations to determine if they are eligible for donation.

If the candidate’s blood type is not compatible with the intended kidney recipient, there may still be options for living donation through paired donation, also known as a donor swap, which matches incompatible recipient/donor pairs with other incompatible pairs. IU health routinely performs such exchange transplants and these typically make up around 15-20% of their living donor transplants. 

If approved to donate, a surgery date is scheduled that works for the donor and recipient. The entire process from start to end for becoming an approved donor generally takes 2-3 months.

How challenging is it to find a living donor willing to donate a kidney or other organ?

It could be a challenge to find a living donor, as many people are not suitable to donate due to existing medical conditions such as obesity, heart disease, advanced diabetes, hypertension or issues and so on. Some patients can modify some of their risks by losing weight to become successful donors.

Finding a donor with a matching blood type can also be a challenge, but with the Kidney Paired Exchange (swap) option, that is generally not barrier to organ donation.

It is advantageous to look for as many potential living donors as possible which increases the odds that an individual will likely qualify to be a direct donor or an exchange (swap) donor. Therefore, looking broadly for a donor is important. We understand it is hard for someone in need of an organ donation to ask for this kind of gift. IU Health provides resources on helping family find ways to be a living donor champion.

What are some of the reasons people may need a kidney transplant? How serious must their conditions be to be placed on a transplant list?

The most common causes of kidney failure in the US is diabetes, hypertension or a combination of both. Other conditions such as Polycystic Disease (PKD), and other auto-immune conditions such as IGA Nephropathy, FSGS, Lupus are common reasons for kidney failure needing transplants.

Any patient who is in kidney failure (dialysis or have a kidney function below 20%) whichever comes first, is eligible to listed to receive a transplant, provided they are medically suitable candidate and the benefits of a transplant outweigh the risks of a transplant.

Severity of kidney failure is not a factor in listing.

What is IU Health's role when it comes to kidney transplants and other transplants around the state of Indiana?

IU Health is the largest kidney transplant program in the state and is one of the leading programs in the country. Of the 250 transplant centers in the US in 2022, IU Health ranks #36 in kidney transplant volume. IU Health also is the only center in the state which offers multi-organ transplants for patients needing pancreas or liver transplants with kidney transplants. We also engaged in the National Kidney Paired Exchange program for patients who have an incompatible living donor. In addition, IU Health offers transplantation for various high-risk conditions such as HIV, advanced cardiovascular issues, prior bone marrow malignancies, or multiple myeloma. We are privileged to be able to help many high-risk patients who are in need a transplant.

How much of a difference can a kidney or other organ transplant make for patients in need who come through IU Health?

It is a positive life-changing and life-saving event for any person to receive a kidney transplant or other organ transplants such as a pancreas, liver, intestine, heart or lung. IU Health's large, dedicated multidisciplinary team, including experienced transplant nurses, coordinators, surgeons and physicians evaluate every possible candidate who needs an organ transplant. With access to advanced and cutting-edge therapies, in combination with the IU School of Medicine, we strive to transplant those patients who otherwise may not be considered at some other medical centers in the country.

If you are interested in becoming a donor, click here.