“A most miraculous experience,” is how Ellen Melaragno, senior secretary in the BHSU Student Union, describes her recent experience of being a living kidney donor for her sister who had been on dialysis.

Ellen, who recently traveled to Tennessee to donate a kidney to her sister, returned to campus this week and was greeted with a “kidney-bean castle.” Faculty, staff, and students, at the suggestion of Ellen’s supervisor Jane Klug, donated cans of kidney beans affixed with notes congratulating her and wishing her well as she returns to work.

“The bean castle was such a surprise,” said Ellen. “What a clever idea and a neat thing to do. It was a great surprise to me and is also a form of giving. Now we will 

Ellen, a 1996 graduate of BHSU, recently returned from the University of Tennessee where she donated a kidney to her sister Jennifer. The sisters, both forty-something, have been close throughout their lifetime. That closeness reached a new level when Ellen volunteered to donate one of her kidneys to her sister when her kidneys shut down due to complications from diabetes. 

Diagnosed when she was just six years old, Jennifer has lived with diabetes throughout her life. Ellen explained that as Jennifer got older she had more complications and went on dialysis last winter, which curtailed many of the activities of her life.

Ellen became seriously interested in the option of providing a kidney to her sister about a year ago after a visit to Spearfish by Jennifer. At that time, Ellen started to think about becoming a living donor because she knew her sister’s quality of life on dialysis was limited. Ellen began to research the possibilities and discovered several advantages to a living kidney donation as compared to a donation from a cadaver. A living kidney donation increases the possibility of a match especially when donated by a sibling. The timeframe the kidney is expected to last is also higher.

“All of the research was pointing toward a living donor being much more successful for her,” Ellen said. “There was no question for me. I knew I wanted to do whatever I could to help.”

That started the process for what became a successful kidney transplant between sisters. Ellen began to make plans, working around her schedule at work as well as that of her family, to make the trip and become a living organ donor. She planned the surgery for late in the fall so that the semester would be well on its way before she left.

In what was Ellen’s first and only surgery, she went under the knife to provide what her sister most needed, a functional kidney. Even as she left for Tennessee, Ellen was not at all sure she could donate or that they would even be a match. She was required to undergo many exams as the doctors checked her from head to toe for any health conditions that could possibly cause complications. She was also tested for the matching capacity. Everyday as Ellen went through a full week of tests, she prayed that the transplant would work.

“They came back all smiles after the final test,” Ellen said.  She said the surgeon finally confirmed that she was indeed healthy enough to undergo the transplant donation and was an excellent match for her sister. “Most siblings have a 3-6 match but in this case we showed a 4-6 match, even closer than they had anticipated.”

After a full year of planning and hoping, the transplant actually became a reality. Ellen was admitted into the hospital immediately and her sister joined her the following morning. As they were being prepped for surgery, the sisters remained together.

“They took us in together and we were talking as we went in,” Ellen said. “Our beds were right next to each other. They were prepping us at the same time.”

After the surgery Ellen was back into her own hospital room by noon, much to her husband’s surprise and relief. Now the sisters, donor and recipient, were given hospital rooms adjacent to each other and communicated by sending messages written on napkins transported back and forth by the nursing staff.

“We couldn’t see each other for two days, so we sent notes to each other,” Ellen recalls.

The success of the transplant was quick and affirmative.

“Immediately the kidney started working for Jennifer,” Ellen said. “She never had any signs of rejection or any problems.”

The recovery time after the transplant was actually harder for Ellen than her sister. Ellen explained that the doctors indicated she would have a longer recovery time since the surgery is more complicated for the donor.

Jennifer’s life began to change for the better immediately. Ellen describes her sister’s recovery as amazing as her energy level increased dramatically. Jennifer, who had lost her appetite and interest in activities while on dialysis, returned to one of her favorite pastimes, that of being “a fabulous cook.” She is once again a night owl and is working on making Christmas gifts for the family.

All in all, Ellen spent a year planning, a week undergoing tests, a week at the hospital recovering and then two weeks of further recovery at her sister’s home for a gift of life that will never be forgotten. All medical expenses were paid by her sister’s insurance. Ellen, who was responsible for the cost of transportation and room and board, is thankful that her daughter recently began working for an airline that allows discounted and free travel for parents. Also Jennifer lives near enough to the hospital that the two were able to spend their extended recovery time at her home. Ellen returned home Nov. 5 and is now back on campus catching up on work, answering the phone and greeting visitors.

“If I learned anything through this, it’s that I know I’m a big advocate of living donations and the remarkable difference a living donor makes,” Ellen said.

The future looks good for the duo who both now have one functional kidney. Ellen has been warned not to partake in rough sports and to monitor some types of medicine consumption, but she basically expects no change in her lifestyle.

“I can handle that,” Ellen said. “It’s really nothing compared to watching someone you love in need.”

Jennifer remains on call for a pancreas transplant that would actually end the diabetes. The pancreas transplant must come from a cadaver so Jennifer carries a cell phone at all times and is available at a moment’s notice to receive the needed organ.

The sisters and their entire family are now looking forward to a family wedding next summer. With the successful transplant behind them, Jennifer is making plans to come to the wedding, something she would not have been able to do on dialysis.

“It’s something special for us to look forward to as a family,” Ellen said. She is quick to praise the entire staff at the University of Tennessee for their excellent care and is thankful for all the support from her friends and family at home.

“It was the support and prayers from you all that helped make this operation such a successful and miraculous event,” Ellen said. “You all helped me so much through the process and the recovery. I consider myself fortunate to have such great co-workers, bosses, and friends.”

Jane Klug, director of student services, echoes the sentiment across campus as she enthusiastically welcomes Ellen back to her desk in the Student Union.

“I am so glad to have her back,” Jane said, “but I’m also glad that she was able to go. I’m pleased that she did such a wonderful, generous thing for her sister. I admire her. What Ellen did was so noble.”

The assistive technology learning lab at Black Hills State University attempts to “level the playing field” for students with disabilities according to Joan Wermers, disability services advisor at BHSU. The lab also expands the learning possibilities for prospective teachers as education teachers have the opportunity to increase their knowledge about assistive learning technologies.

The new assistive technology learning lab 

Wermers realized there was a need for increased assistive learning options for students with disabilities at BHSU. She also knew that future teachers in special education classes at BHSU could gain valuable knowledge about assistive learning techniques by observing a lab setting and becoming familiar with technological changes.

Wermers, in her constant pursuit of efficiency, took the initiative to combine these two related needs in a request that resulted in a Bush mini-grant to fund the establishment of the assistive learning lab now located in the Student Union. Grant monies were used to fund technical consultations, training, and software purchases for the lab. Wermers pointed out that Student Support Services contributed computers and some basic software while the Student Assistance Center was instrumental in finding space for the assistive learning lab. In addition, the College of Education and a private donor have supported upgrades and supply needs. Assistive technology gives students with different learning styles and abilities the tools they need for active learning according to Wermers. The grant was an extension of services offered by disability services. She said the main goal is to improve the assistive technology access and training by building on the combined resources of disability services and the College of Education.

“We expect that students with disabilities will have access to the proper tools or opportunities to learn in ways that accommodate their needs and that special education as well as all education majors will be prepared to provide assistive technology devices and services to eligible children when needed,” Wermers said.

Wermers pointed out that the assistive technology is available for all students and have been used by students facing temporary disabilities such as surgery or an accident. She said staff members have also benefited from assistive learning technology that improves their work stations.

“What we do is level the playing field,” Wermers explained. “We do this in a lab setting that is similar to technology available in real world work situations.”

The assistive technology lab is taking the place of services previously provided by “readers” and “scribes” and the software available on one computer located in the library.  Now the lab includes a variety of assistive learning technology and access to several computers in a lab setting. The increased access in the lab setting has been beneficial for students.

The lab has been set up to provide prospective teachers with training enabling them to have basic knowledge of the programs and to provide assistive technology devices and services that results in comparable learning experiences for students with special needs. Wermers’ technology assistant, Kenneth Williamson, provides training and mentoring services to students with disabilities and education students utilizing the lab.

“Future teachers have a need to know about and understand assistive technology. This lab gives them a chance to see it and use it in a lab setting,” Wermers said.

Dr. Gregory Cooch, College of Education assistant professor, says the lab is very advantageous for BHSU students as well as current teachers.  Students in his higher-level special education course go into the lab in small groups to learn about the assistive technology.

“The lab is set up very efficiently and is so well organized,” Cooch said. “Williamson goes through the different software programs and tutors our students on the uses of the technology. This will make our students better able to assist their students so they can perform better academically,” Cooch said.

Cooch noted that area teachers have also requested access to the lab to improve their knowledge of assistive learning technology.

Wermers notes that Williamson, a BHSU student who has faced disabilities himself, has been instrumental in the success of the assistive learning lab. Williamson, a web administration and network administration major, relies on his personal experience to better mentor and train students to use the assistive training technology. He applies what he has learned in his struggles as a student with disabilities as he instructs students and encourages them to succeed.

“This job allows me to interact with other people faced with disabilities and help them find ways to cope,” he said. “My past gives me great respect for what [students with disabilities] are going through. I know where they are at and where they are coming from because I’ve experienced it myself.”

Williamson set up three computers in the assistive technology lab and maintains these computers for others to use. He is available in the lab every day of the week. After an initial training session to go over the technology with students, Williamson continues to meet with students in the lab to improve their ability to use the assistive technology.

Williamson received consultation and set-up assistance from DakotaLink, an assistive technology project under contract with the Black Hills Special Services Cooperative. Williamson works with a variety of software programs including screen readers, scanners with text to speech ability, word prediction, screen magnification and other technology.

“Students are very eager to learn. Use of the lab can improve their grades if they devote themselves and their time to making class work easier for themselves,” Williamson said.

Williamson speaks to special and regular education classrooms and then spends time in the lab with these future teachers going over the many types of assistive learning software.  He conducts training sessions for special education students and works with these students in small groups to encourage them to try out the assistive technology.

Williamson noted that although some teachers have used these software programs, many teachers lack the training needed and that when teachers lack, the students lack in their ability to successfully use the programs. Dragon Naturally Speaking, a text to speech software program, is the program cited by Williamson as being used the most often. Kurzweil 3000 is another popular program which is particularly useful because it integrates all software versions. Williamson praised the changes and improvements in assistive technology in the last five years. He especially appreciates the ability of programs to integrate with each other as well as commonly used word processing applications.

Wermers encourages students with questions, prospective teachers or even current teachers to learn more about this technology and how it can be used to improve the students’ ability to learn.  Contact Wermers at 642-6099.