Barb's Story
Because Barb Matulionis, left, didn’t give up on becoming an altruistic kidney donor, her recipient, Deanna, right, and five other people received life-saving kidney transplants.
Name: Barb Matulionis
City/Town: Cincinnati
Current Age: 54
Occupation: Registered Nurse
Date of Donation: October 31, 2017
Hospital and Location: The Ohio State University Wexner Medical Center
Did you know your recipient?
No. I was a non-directed donor and started a chain that included 12 people — six transplant recipients and six donors. My recipient and I exchanged letters through our coordinators after the surgeries and I was thrilled to meet her five months after the surgery. My daughter and I flew from Cincinnati to San Francisco where we met my recipient, her husband and others in the chain. It was an incredible experience. We continue to communicate with each other.
What made you decide to donate?
The idea of donation just came to me one day, and I knew it was something I could do. I had a long history of donating blood and platelets, and I was on the registry to donate bone marrow if I was ever a match. I didn’t know anyone with kidney disease.
I first tried to donate in 2013 but was declined as a donor due to the potential to have problems with certain known anesthesia. It’s a genetic condition called Malignant Hyperthermia that is carried in my family. I figured it wasn’t meant to be and let the idea of donation go for many years.
A news story about a local woman in need of a kidney inspired me to try again. Knowing I was declined once to be a donor, I prepared myself well before contacting another facility. With the help of The Malignant Hyperthermia Association, I obtained support for my potential donation. I could safely have surgery if they avoided certain anesthesia. I chose The Ohio State University Wexner Center and proceeded with my donor evaluation.
Was it a tough decision?
Yes, it was a tough decision. Being a nurse, I wanted to know about all the “what if” scenarios and potential problems.
What were your biggest concerns about donating
I worried about unknowns such as having lingering pain or complications after surgery. Silly as it sounds, I was worried that the airplane might crash with my kidney in it. My biggest concern was that my kidney would fail in the recipient. That’s the main reason why I wanted to start a chain. If my kidney didn’t work, at least I started a chain and others would benefit.
How did your family and friends react when you told them you were going to donate?
Most reacted positively with support. I could tell when people couldn’t understand why I would do such a thing. They chose to not say much. My daughter and husband were supportive, but when the date for surgery was set, they both became frightened. The weeks of waiting for surgery was difficult for them, and therefore, me.
How did your surgery go?
Surgery was as expected. I was discharged in just over 48 hours.
What was your recovery like while you were in the hospital?
My hospital recovery is a blur. Initially, I was pretty drugged from pain meds and anesthesia. I remember being very glad when my catheter came out. Getting in and out of bed was a challenge. I walked the halls.
What was your recovery like at home?
I only needed two pain pills after I went home. I crocheted a sweater, read, rested and walked. I drove one week after surgery. I was expecting the fatigue to be profound based on my research. For me though, fatigue was not an issue.
What was the most difficult part of recovery?
The soreness in my abdominal muscles and gastrointestinal upset. It was much improved after two weeks.
When did you return to work?
I returned to work eight weeks after surgery. This was a long time and only needed due to the potential for heavy lifting at my job as a nurse. Otherwise, I could have returned to work earlier.
How long was the process from making the first contact about donating until your surgery?
About nine months.
Is there anything about being a kidney donor that's surprised you?
No.
Would you do it again?
For sure!