Thanks to Corneal Transplantation, Fabric Artist Creates Beautiful Quilts Again

Thanks to Corneal Transplantation, Fabric Artist Creates Beautiful Quilts Again

For Connie, the road to restored sight was a journey she wasn’t sure would happen. At first, a deep vein thrombosis (DVT) blood clot in her leg stopped the process and she had over six months of healing before she could try her eye surgery again. During her second scheduled appointment, COVID hit and shut down all elective surgeries. After waiting one and a half years, it seemed the third time was the charm, and Connie received her corneal transplants in June and August of 2020.

Awaiting Corneal Transplants

While healing from her DVT blood clot, Connie wasn’t sure if she would ever be able to have her corneal transplants because she was having trouble both walking and seeing. “I reached out to the Springfield Missouri Council of the Blind and they were a great help. They brought me magnifying glasses and books on tape through Woolford Library. Everything they do is free, and they even brought me the best sunglasses. It was so easy, and they were so kind – I appreciated it so much.”

Connie, 72, says she lives about an hour outside of Springfield on 100 acres and in a home she built about 40 years ago. The Council of the Blind came out to her house since she wasn’t able to drive. “I’m not ready to give up my land and my house. They helped me out enough that I can not only survive out here but thrive.”

Corneal Transplantation Experience 

“For the last ten years, I had been dealing with Fuchs dystrophy. I think I could have lived with Fuchs a little bit longer, but my cataracts started to get really bad,” says Connie.

“My surgeon, Dr. Seagrave, was just exceptional and so was his nurse Barbara. My experience was a surgery that lasted about an hour and there wasn’t any pain involved.” Dr. Seagrave was able to perform her cataract surgery and corneal transplant surgery at the same time. “He said doing them together was the most efficient and it gave me less overall healing time. That’s why I like Dr. Seagrave, because I felt he was up to date in procedures. It was wonderful only having two surgeries instead of four.” 

Life After Transplantation

“I can’t tell you how much it means to have my vision back.” Connie can get back to her fabric studio in her home. “I used to do a lot of intricate handwork. I love quilting and embroidery. I was noticing how bad my vision was getting because it was getting hard to see to do that. Now I’m able to do it again! I did an incredible quilt for my daughter this year with lots of precision cutting.”

Connie has also always been a huge reader and it was challenging for her not being able to read print. She’s happy to see to read again, though she still isn’t able to read regular print easily. She has been reading on a backlit Kindle since she was first diagnosed.

Connecting Through Saving Sight’s Correspondence Program

“I wrote a letter to the donor families. My whole philosophy of life is to just be grateful for what you have. When I had the corneal transplant, it was like getting a superpower. When this happened and it worked, I just realized how lucky I was. If somebody hadn’t donated corneas, I wouldn’t be able to see.”

“I decided to wait to write the letters until both transplants were done. I thought, what a heavy letter. I wanted to say thank you and tell them how much it really changed my life.”

 

Stephanie’s Journey with Keratoconus

Stephanie’s Journey with Keratoconus

“I was diagnosed with keratoconus, which basically deteriorates your cornea,” says Stephanie. “I have the disease in both eyes, but my right eye ended up progressing a lot faster than my left and made it necessary that I have a cornea transplant.” She adds that though the thought of having her first cornea transplant was scary, it ended up being a pleasant experience.

“I got lucky and had one of the most compassionate surgeons from my area, Dr. Shachar Tauber. When I went in for my cornea consultation, I cried as I am young – I’m only 37. Going into it, it was very scary. I went in the day of my surgery feeling extremely nervous. After a few hours, everything went well, the old cornea was removed, and the new cornea put in. I left with a beautiful blue eye with 16 stitches. My son was amazed because I naturally have brown eyes and the next day, when taking the bandage off, I had a shiny new blue eye,” she says, adding her eye eventually turned back to her natural brown color.  

“During my follow-up appointment, I opted to ask about my donor.” Stephanie learned her donor was a 59-year-old female. “I opted to write the family a thank you letter, but never received anything in return and that is ok because I just wanted them to know how grateful I was to them for the gift of sight.” She adds that prior to her transplant she hadn’t considered how much receiving a cornea transplant affects you mentally, especially considering how it impacts your vision. 

“Many people only think about the main organs like hearts, lungs, kidneys, livers, but never really your eyes. You see, every day that I look out of my eye and I can see and I can’t help but think of my donor and her family. Because she and her family opted to be a donor, I now can see. I can see to craft, I can see to drive, I can see to work, and most importantly I can see to watch my son grow into a young man.” 

“I don’t think people truly understand the importance of being an organ donor. It can help save lives, but it can also be just as important to someone else who needs an organ as small as a cornea…because of someone else I am able to see, and I will forever be grateful.” 

Restored Sight Takes Carol to New Heights

Restored Sight Takes Carol to New Heights

​“One of my favorite things to do is swing on the 10-foot-tall swing in my backyard,” says Carol.  “I go on it every day and as I’m swinging, I can see everything going on and all the changes in the seasons. Every time I do it, I see something new in my yard and my neighborhood – it’s even better now after my surgeries. It’s my relaxation and my mediation.”

After years of battling the progressive eye disease Fuchs Dystrophy, Carol’s sight was restored through corneal transplantation.

Carol’s Experience with Corneal Transplantation

“I inherited Fuchs Dystrophy from my father, who endured two unsuccessful corneal surgeries in the years before tissue transplants were available. Back when my dad had it, this new technology had not yet been developed. He endured a much more invasive surgery and it didn’t work. The whole thing was terrible for him and I was nervous to get it done. I dealt with that condition for many, many years and tried to treat it with eye drops for 15 years,” she says.

Eventually, Carol realized she needed to have surgery and scheduled an appointment during the middle of the pandemic. She was scared because of her father’s experience but was uncomfortable because her vision was so impaired, and her corneas had become scratchy and dry. “One of my corneas had even blistered,” she adds. Her friend, Dr. Cindy Penzler, who is a respected ophthalmologist in Topeka, recommended she reach out to Dr. Timothy Cavanaugh with Cavanaugh Eye Center in Overland Park, KS for a consultation.

“As soon as I met with Dr. Cavanaugh and went through the extensive eye exam I knew I was in good hands. I was impressed by how educated he is, his passion for it, and his fantastic staff. He just made me feel that confident,” says Carol. “Dr. Cavanaugh’s process is so unique because, not only is he experienced and efficient with DSAEK corneal transplantation, but he was the only surgeon I could find to do simultaneous cataract and corneal procedures. That made it 2 surgeries instead of 4, since I had cataracts on both eyes and needed both corneas replaced. It’s amazing how complicated it is but how well he does it.”

One thing Carol found interesting during her initial exam was viewing the image of a healthy cornea compared to her cornea. Where you can see a cornea full of cells in the healthy cornea, the image of her cornea was just black. Dr. Cavanaugh came in and explained to Carol that was because you could literally see just a few cells left on her cornea.

After her surgery, Dr. Cavanaugh told Carol her donor was a “super donor” explaining that at birth the cornea has 3,000 cells and at death it’s usually around 2,000. Her donor’s cornea had 2,900 cells – and Carol’s diseased cornea had virtual none.

“You can imagine because of that it was a miracle for me. Within 2 to 3 days of the surgery I was seeing better than I ever had and I was still healing. It was life-changing! I was like a kid who just woke up from a black and white dream. Brighter, clearer and truer. And you have to remember I had the cataract surgery as well. When I went back to the next appointment one week later, they said I healed faster than most and I thank my super donor for that.”

After her first surgery in June, Carol had her second cornea transplant in August. “I may still need a prescription at some point but right now I can read and drive without glasses and hadn’t been able to in 30 years – that’s a win for me.”

For Carol, the process has been easy, and her surgeon did everything they could to make her comfortable during the procedure. “After meeting Dr. Cavanaugh, my attitude was I couldn’t wait to get this done. It was all outpatient and I had faith in Dr. Cavanaugh. It was maybe 2 hours at most. Everyone was friendly and upbeat. Nothing about it provided anxiety, pain or nervousness for me. I tend to be someone who can relax myself well though. The only thing that was a little difficult was keeping my head flat/back for 48 hours after to hold cornea transplant in place.”

Life After Restored Vision

Today, Carol is retired after working a majority of her life for an internet publishing company where she sold online and print advertisements for technology companies. Her first grandchild was born in early October. “I got to hold him and look at his face through clear eyes and see it so clearly and feel it so deeply, much more so than I would have before the surgery,” she says.

Reading for Carol is also number one and has been so enhanced by her cornea transplants. “The best thing for me is for the first time in probably 30 years I don’t have to have glasses to read. I read all the time. And I volunteer for the audio reader programmer and it provides a 24/7/365 radio service for the blind and reading impaired. This lets me continue that so much easier. I read and record live shows and newspaper stories for an hour every day. Every single thing in my life is enhanced by good eyesight,” Carol adds.

Connecting through Correspondence

Following her transplants, Carol received a letter in the mail about Saving Sight’s Correspondence Program. “I was so happy to get the letter from Saving Sight about correspondence because I was thinking to myself, how do I thank the person who did this for me – what it has meant to me to be able to see so much better? This allowed me to say thank you to the donor family. I wouldn’t have had access to that information if I wouldn’t have received that letter. I realized it went beyond Dr. Cavanaugh. It began with the donor and it was so nice to be able to close that loop for me and let them know how much I appreciated their loved one being open to donation, to tell them this is what happened. It saved my sight.”

“And I’m just very deeply appreciative of the work that Saving Sight does as well. I can never thank Dr. Cavanaugh or the donor enough for this second lease I have on life. This was a 100 percent uplifting experience for me during the worst pandemic of our lifetime.”

Learning About Organ, Eye and Tissue Donation

“I’m listed as an organ donor and had never thought about eye donation before this. It wasn’t until my surgeries that I thought about this and I just found it so amazing. I have a whole lot of respect for doctors, and researchers and those in the industry who are advancing this field,” says Carol.

“It’s so needed because there are so many common eye diseases that could use corneal tissue to help the patient. It’s a huge contribution people can make through donation – if you contribute nothing more than cornea tissue you have made a significant difference in the lives of others.”

You can join the national registry or learn more about organ eye and tissue donation at registerme.org.

Local Coroner Connects Families to Gift of Sight in Moments of Darkness

Local Coroner Connects Families to Gift of Sight in Moments of Darkness

Coroners and medical examiners work in difficult and often emotionally taxing situations. From doing investigative work at death scenes, conducting autopsies, and notifying the next-of-kin about a death, the job is often demanding and not fully understood by the communities these individuals serve.

Taney County Coroner, Tony Mullen

Taney County Coroner, Tony Mullen, believes that donation is one way he can bring hope to others during a time of grief.

In southwest Missouri, one county coroner has found a way to serve his community in a way that brings hope of restored sight and life to others in the darkest times of loss. Taney County Coroner, Tony Mullen, works with local eye tissue bank, Saving Sight, to offer the opportunity of eye donation. For many families, honoring their loved one’s wish to give the gift of sight through donation brings a sense of peace and hope during the hardest time of their lives.

“When you can physically see the results of donation, it’s huge,” said Mullen. “As a family member, I would feel honored if my loved one could be a donor.”

As the county coroner, Mullen is in the unique position to work with agencies like Saving Sight when a death occurs to offer donation as an option in many cases. Mullen is also committed to educating others in his local community about donation and providing resources to help others understand the process. He believes it’s crucial for an individual to make their wishes about donation known to their family.

“For many people, the only exposure they have to donation is at the DMV when they sign up,” said Mullen. “In the position that I’m in, I have the opportunity to educate others.”

Each day, Saving Sight provides the gift of sight to nine individuals through the gift of cornea donation and transplantation. Additionally, 110,000 individuals in the U.S. are waiting for a life-saving organ transplant. You can make a difference in the lives of others by joining the eye, organ, and tissue donor registry at registerme.org and sharing your decision with your family.

Leadership Through the Years – Board of Directors

Leadership Through the Years – Board of Directors

The Missouri Lions have given their volunteer, financial, and board support to our programs since 1960. Because of their support, Saving Sight is able to change more lives by saving sight each and every day. The Saving Sight Board of Directors is comprised of several key Lion members. Their leadership and expertise has helped the eye bank grow and evolve throughout the last 60 years and continues to move us forward into the future.   

Read why Pat Martchink, Board President, and Larry Boettcher, Board Vice-President, find serving on Saving Sight’s Board to be impactful.  

How long have you served on the Saving Sight Board and in what roles? I am in my fifth year on the Board. One year as a member, one year as Secretary, and now in my third year as President.

Why is it impactful for you to serve on the Saving Sight Board? I have worked professionally in nonprofits for more than 35 years and I believe it is a noble cause. My father was blind for a part of his life so I understand the importance of Saving Sight’s mission. I believe in the idea of “service” and being a part of Saving Sight helps me to fulfill that idea.

How does the Board function to support Saving Sight’s mission to change lives by saving sight? The Board helps to provide the “big picture” for the agency and then supports management to move the agency in that direction.

How have things evolved since you first became connected with Saving Sight? I believe the Board has grown stronger in its support of the Saving Sight leadership. The Board wants Saving Sight to be progressive due to the competition of other eye banks and the for-profit entities businesses that have similar interests.

Is there anything else about your experience as a board member or about Saving Sight you’d like to mention? I am thoroughly impressed by the work ethics of the entire Saving Sight Staff. They work hard and are truly dedicated to the mission of the organization.

Pat Martchink, Board President

Lions District 26 M-2

How long have you served on the Saving Sight Board and in what roles? This is the beginning of my third year of my first term as a Board member elected to serve Saving Sight from my Lions District 26-M4. Prior to this term I was appointed by the Council of Governors for Missouri Multiple District 26 to serve as a Board member in my Lions capacity as the Vice-Council Chair for one year, and as Council Chair for the second year. I have served as the Board Vice-President for the past two years and I was elected by the board for the current year starting July 1, 2020. This is the beginning of my fourth year on the Executive Committee which meets once a month. Last year, and again this year, I have been appointed to serve on the Finance Committee which meets quarterly or as needed ahead of the Board Meetings. 

Why is it impactful for you to serve on the Saving Sight Board? I believe my prior leadership positions that I have held in the Lions Organization along with my formal education, management training and seminars through Lions International, and my 21 year career in management, I bring all of that knowledge and skill set to this Board. One of the things I am known for on the Board is knowing our By-Laws and making sure our decisions follow those set guidelines. I always have my copy of our Board Handbook ready for review at any time, whether it is during a committee meeting or during the Board meetings.

How does the Board function to support Saving Sight’s mission to change lives by saving sight? First, the Board as a Governance Policy that has the guidelines for the Board and for the CEO for the overall operation of the organization. This allows the day to day operation of the organization to go on without constant Board involvement. Second, the Board is responsible for actively participating in long-range planning for the organization along with determining the programs and services provided. As a Board we have to be progressive and always looking to the future for the overall success of the organization. An example is Vital Tears, in 2016 the Board approved the initial investment into creating that joint venture. They did this because they recognized with the Leadership at Saving Sight that there is a growing need for a solution for patients with chronic dry eye that can’t get relief from what was currently available. That part of our business is thriving and growing at an increasing pace. We have to continue to look for the next possibility, do our due diligence with our collaboration with Saving Sight leadership to continue the growth and sustainability of our organization.

How have things evolved since you first became connected with Saving Sight? We have tried to recruit Lions and community members that bring a different perspective to the organization, and a true willingness to serve. We have brought the Board and Saving Sight leadership closer together in our working relationship by taking the effort to fellowship with one another after our meetings and spend time getting to truly know each other. We have focused on Board training including a new On-Boarding program that I developed for our newest board members each year. We have found that by covering all of the information ahead of their first Board meeting we have been able to use our time together in the Board meeting to focus on what needs to be done, rather than answering questions over and over each year.

Historically, how have the Missouri Lions supported Saving Sight? Individual Lions and Individual Lions Clubs have donated money over the years to support the mission. When Saving Sight handled recycled eye-glasses the Lions of Missouri collected the glasses in their locations and brought them to Saving Sight for distribution in third world countries. When Saving Sight controlled the KidSight program the Lions of Missouri volunteered their time and money to support that program. The proceeds from the Missouri Lions All-Star Football game each year was donated to Saving Sight. Over the years the Districts in Missouri and the Multiple District raised money for matching grants through Lions Clubs International Foundation to purchase equipment for the labs. 

Is there anything else about your experience as a board member or about Saving Sight you’d like to mention? I can honestly say that I enjoy serving on this board. This isn’t a mundane meeting that you just dread going to, because what we do does make a difference and has a profound impact on our communities. Not only for our employees, but for all of those patients that have restored eye sight or relief from their dry eye. I believe in what we do so much I personally support the organization through monthly giving.

Larry Boettcher, Board Vice-President

Lions District 26 M-4

Casey’s Story – Twenty-One-Year-Old College Student Regains Sight

Casey’s Story – Twenty-One-Year-Old College Student Regains Sight

“Since I had my cornea transplant my experience has been filled with joy because, for the first time, I do not feel like there’s anything that can hold me back. I feel like I can literally do anything without worrying about my sight,” says Casey. Casey is currently a dual major student and is studying Criminal Justice and Psychology with credentials in International Conflict and Child/Adolescence Development. When Casey was fifteen years old he developed a cataract on his left eye. Without cataract surgery, doctors said he would go blind in that eye. “However doctors did not know whether the surgery would restore my sight,” said Casey. “I had the surgery and waited a few months to see if my sight would be restored.

The surgery was successful in removing the cataract and it didn’t leave me blind, but it made my vision worse. However I never told anyone because I didn’t want to feel like a burden.” A few years later, Casey told his family and eye doctors that his vision had worsened in his left eye. His doctors told him that a cornea transplant was needed to restore his vision. Casey, now twenty-one years old, says his experience with his cornea surgery was a little frightening. “My doctors had given me so much hope, however I was fearful the surgery would not be successful – I was scared to believe.”

Casey’s cornea transplant was a success and his vision is continuing to improve during his healing process. “One of my favorite things to do is play video games and before my transplant I had to literally sit right in front of the television in order to see the game more clearly, but now I do not have to be so close,” says Casey. He can now see things further away as well. He is able to see road signs more clearly and looks forward to his doctors clearing him to drive. Prior to his transplant, he also had to have large font and use a magnifying glass on his phone. Now he enjoys putting his phone in standard mode to view his text messages. “I have learned a lot during this long process. I learned that there are hundreds of people like me out there who need a second chance at living. I know as a recipient I have the power to spread my message to people.

Organizations like Saving Sight are helping to restore sight to those like me who need it.” He adds that when it comes to donating, it’s about saving a life; it’s about restoring someone’s way of living and giving them hope for a better future. Casey chose to write a letter thanking his donor family as well. “After my cornea transplant I was approached about writing a letter to my donor family and I just loved the idea. Because of their family’s sacrifice, I am now able to see clearly and I just wanted to tell them thank you for what they have done for me.” I’m just grateful to my doctors who were amazing and who gave me hope and inspired me and to the donor family who during their tragedy and loss chose to donate. And I’m also very thankful to my family who are awesome people, drove me when I couldn’t drive, and took off work to come to my appointments.”

Casey has designated his decision to join the donor registry at his local DMV. “I love to help people and so on my license I chose to be a donor because I believe if someone is out there who needs it then why not donate?” You can join Casey by registering to be an organ, eye and tissue donor at your local DMV or at registerme.org.