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Barbara Matulionis

Posted By Administration, Wednesday, May 24, 2017

 

Barbara's Story --

 

Four years ago, I became interested in donating a kidney to someone that I do not know. I contacted a local hospital in Cincinnati and proceeded with the work-up. In the end, I was declined as a donor due to having strong family history of Malignant Hyperthermia. Unless I could prove that I was not MH susceptible, I would not be given the opportunity to donate. I was disappointed because I went through with nearly all of the testing. Additionally, I have had many surgeries in the past using non-triggering anesthesia. I believed I could safely have a kidney removed.

This was the impetus for my sister and I to get tested for MH. While being turned down as a potential kidney donor was the initiating event to start the process, we really wanted to know our status so we could, hopefully, clear our children of this condition. We knew we each had a 25% chance of being susceptible.

Using airline and hotel points, we went to Wake Forest Baptist in Winston Salem, NC to have the muscle biopsies done. It turned out to be a fun and memorable trip. My sister had her testing done one day and mine was done the next. The medical care we received was outstanding. It was painful afterward, but since it was muscle pain, it was very tolerable. But we did use the wheelchair services at the airport to save walking!

Unfortunately, the results of the biopsies showed that we are both susceptible to MH. We were not able to clear our children, but we are very glad we had the testing done.

I let the idea of kidney donation go, figuring it wasn’t meant to be. Recently I saw a news story about a woman in Cincinnati who was in need of a kidney. This re-inspired me to try again. My sister and I had some communication with Dr. Joseph Tobin early in our testing process, so I reached out to him and asked if he was willing to write a letter of support. After consulting the group of anesthesiologists at MHAUS, he wrote a brilliant letter that was educationally informative and indicated support by MHAUS that I should not be declined as a potential kidney donor due to being susceptible to MH.

I researched other transplant centers within driving distance from my home and made a decision. After doing the initial paperwork and labs, I drove to Columbus, OH to meet with anesthesia, support letter in hand. I was approved to continue in the evaluation process. I left the center feeling confident that the medical professionals understood the condition and that I would be in good hands should I be approved to donate my kidney. I am extremely grateful to Dr. Tobin for his support. I have nearly completed the donor evaluation and hope to donate my kidney in the near future.

 

*UPDATE*

All is good! Surgery was early Oct. 31, 2017 and I was discharged Thursday, November 3, 2017. Today, November 7, 2017, marks a week and recovery is going well. I was told I started a chain of 5 donor/recipient pairs. I'm awaiting an update on the recipient. I asked for, and received, a picture of my kidney!

 

As told by Barbara Matulionis 

Tags:  Barbara Matulionis 

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