A Life- Changing Gift
We share the story of one patient, one donor family and one physician to show what it really takes to restore 20/20 vision.
Crystal Ellis and Christine Sindt |
Ophthalmic surgeons perform around 40,000 corneal transplants in the US every year. Here is the story of just one of them. Crystal Ellis was in middle school when she lost sight in her right eye. It took 19 years and the ingenuity of Christine Sindt for her to see properly again.
“Just a regular kid” – the Patient’s Perspective
With Crystal Ellis
It all started in 1999. I was just a regular kid – going through middle school, trying to pass driver’s ed. I woke up one morning with blurry vision in my right eye. I went to the doctor thinking it was pink eye and they treated it like that for two weeks. When it didn’t go away, they referred me to an ophthalmologist; but they were stumped too. Scarring, which looked like pockets of crystals, suggested a viral infection, but there was no evidence to prove it – and there is still none to this day. Without a diagnosis, there was nothing they could do. And that’s how I lived for the next few years.
A gift that’s impossible to repay
Fast forward to 2005, and my eye was in really bad shape. Everything seemed dark and murky; it was like trying to see through layers of wax paper – there were blobs of color but no definition. Not only that, but the scarring had thinned the corneal tissue. A doctor took one look during a check-up and said, “If you bump your head, your eye could rupture. You need surgery – now.”
It takes a lot to psych yourself up for surgery. I didn’t realize just how much until I woke up and was told that the transplant hadn’t happened. The donated cornea had been cut incorrectly and would have been rejected by my eye. I was crushed. Luckily for me, it only took two weeks before another became available. So, on June 5, 2005, I got my new cornea.
Part of me thought I would wake up from the transplant and my eye would be like it was before. But it wasn’t at all. My vision had barely improved. Instead of looking through multiple sheets of wax paper, it now felt I was looking through one. I could make out a letter or a number if the writing was big enough, but that was it. I told myself this is how it’s going to be forever. I better get used to it.
About six weeks after the operation, the Iowa Lions Eye Bank asked if I wanted to receive a letter from the donor family. What they sent was beautiful. It was from a mother who had just lost her five-year-old son – my donor. She told me how he had been an outdoorsy, adventurous little boy who loved animals and fire trucks. That’s when it hit me that someone had to die for me to see. This little boy had saved my sight – my life.
I didn’t write back straight away. I just didn’t know what to say… “Thanks, and I’m so sorry your son died,” wasn’t going to cut it. It felt like I could never say enough, so I said nothing. I had already taken an entire semester off college and was just about finding my feet when I discovered I had thyroid cancer. It took another four years before I had a full bill of health.
I was 24 when I finally finished college. I was moving into my first house a year later when I rediscovered and re-read the letter. Why had I never replied? After I stopped crying over what a terrible person I was, I wrote to tell them about everything I had been going through – while admitting it was no excuse for not getting in touch. I told her how I thought about her and her family every day. We wrote each other back and forth and I really got to know her; Misty was a kind, generous woman and mother to a beautiful family.
Fulfilling a dream, reliving a nightmare
I had wanted to go skydiving for a long time, but scarring from the transplant had left me with a thin cornea, and the doctors didn’t know if it could take the pressure of the jump. I got the all-clear just in time for my birthday. I invited Misty and her family to come down as a way of saying thank you for the gift they gave me. They said they couldn’t make it but appreciated the offer.
The big day came and I did the jump. As I landed, I walked past a bunch of people – including my donor family. Apparently, my stepmom had been coordinating with Misty the whole time. It took me a minute but as soon as I realized who they were, I burst into tears. It took seeing Misty in person for me to truly realize that I’d been given a gift I could never repay. Even now, it gives me goosebumps just thinking about it.
That day was a turning point for me. Misty and her children became my extended family, and now we volunteer together as donor and recipient speakers at the Iowa Lions Eye Bank. It is so rewarding to hear people say, “I was going to write to the people who received my loved one’s organ or tissue, but I didn’t know what to say. Now that I’ve seen how much it means to you, I’m going to reach out to them.” And I know people say the same thing to Misty too. Misty and her family live two hours away, but we get together when we can to share our stories.
Despite accomplishing my dream to skydive and gaining a new extended family, I was still having trouble with my eye. The stitches had started to pop through the surface of the transplant. To remove them, the doctor had to break the knot under the surface, which was uncomfortable. Not only that, my eye didn’t heal correctly: instead of being round, it protruded at the top, and I still couldn’t see much.
A twist of fate
Around the same time, Steven Jacobs – my ophthalmologist since 1999 – was retiring; I didn’t know what I was going to do. Steven, and everyone who worked in his department, were like family to me (I still send them Christmas cards now!). As luck would have it, his replacement was Elizabeth Geiger, who had just done an internship at the University of Iowa, where she’d met a doctor called Christine Sindt. Christine was apparently doing “amazing things” – inventing an entirely custom-made lens that had the potential to correct my vision. Elizabeth got me an appointment right away – and Christine told me I was a great candidate for the lens. The catch? It costs $4,000 and my insurance wouldn’t cover it.
So here it was, the thing I’d been waiting for – a way to see again – and I couldn’t afford it. I almost didn’t want to tell my friends and family about the appointment, because I couldn’t bear to see the disappointment on their faces. But telling them was the best decision I have ever made; they suggested I set up a “YouCaring” page to ask for donations. It was actually easier than I thought. I had been sharing my transplant story on Facebook for years, and people had got to know me and my ‘bionic eye.’ I posted a link to the page and within two weeks, I had $5,000.
I called the clinic that day and told them I had the money. I’m not sure who was more surprised – them or me! From there, the money was split three ways – $1,000 for the imprint, $2,500 for the contact, and $1,500 between office visits, co-pay for a specialty doctor, and tools, solutions and saline sticks to get the contact in and out of my eye. Christine was wonderful through it all – but particularly when it came to the impressions. They were done with an epoxy mold like the kind you get at the dentist. I remember sitting in the chair watching Christine flick blue goo into a funnel. “What are you going to do with that?”
“We’re going to take a mold of your eye,” she said.
“You’re going to do what?”
She must have seen my face because I was told that it would be totally painless: “I’m going to do it so quick you won’t even know it happened.” And she was right, it didn’t hurt at all.
A second gift
I vividly remember the day I received my lens. It was winter and I was wearing a purple jacket. Up until that day, colors were dull – even with my good eye. Being able to see properly with my new lens made everything so bright. I remember walking out of Christine’s office and seeing a picture of a sunset on the wall. I started bawling. “Look at that picture!” I said. “It’s so orange! Was it always that way?” I couldn’t get over how pretty it was. Even my jacket looked beautiful – how could it be… so purple?
It feels strange reflecting on my journey because for a long time, I didn’t think I’d see properly again and I’d come to terms with that. My eye had healed – no more ‘virus’, no more scar. Getting told there’s a chance I could see was almost worse, because I couldn’t stand the disappointment if it didn’t work. But it did work and now, for the first time in years, I have 20/20 vision. Of course, there have been some teething issues. Trying to tell my brain to use that eye again is hard. After all, I couldn’t see properly for 19 years! You want to simply turn on a switch, but it doesn’t work that way.
I recently had the honor of representing Team Iowa in the Transplant Games of America. The Games is a multi-sport event for people who have undergone life-changing transplant surgeries. It celebrates the lives of donors and recipients, and raises awareness of the need for organ, eye, bone, and tissue transplants in every state. When the Iowa Donor Network asked me to take part, I was uncertain at first because I don’t have a competitive bone in my body! But it was Deb Schuett, my contact at the Iowa Lions Bank, who encouraged me to say yes. Deb was the person who put me in touch with my donor family, and we were still very close. With her support, I joined Team Iowa, and we even ended up rooming together at the games! Despite not playing a day in my life, I decided on cornhole and darts. When I told Christine, she couldn’t believe my choice: “Don’t you know darts is a leading cause of eye injuries?!”
The games turned out to be a huge success – not only because I didn’t get hit in the eye, but also because I won gold in darts and two golds in cornhole – one for playing as part of a team, and another as an individual. It must have been beginner’s luck! But the medals were just a small part of what made the games so amazing. I met some phenomenal people, and made new friends that will be part of my life forever. I also got the chance to hear the most beautiful and heartbreaking stories. It was incredibly humbling to consider that many of these people would not be around without organ and tissue donation. But here they were – cheering each other on, celebrating each other’s victories. It was the best experience ever. Life is good.
Seeing Eye to Eye – the Physician’s Perspective
With Christine Sindt
About 20 years ago, I was treating a little girl who fell on a glass. It shattered and a shard went in her eye. She lost the lens and had a large corneal scar that caused a millimeter height difference in her ocular surface. I administered corneal gas permeable lenses for as long as I could, but she became intolerant. I thought there had to be a better way. In eyes that have suffered trauma, like hers, the ocular surface stops being round. If I could just get a lens to lock in to the eye like a Lego piece, I could get this child to 20/20. And that’s really where my journey into “eye printing” all began.
I thought about my patients and decided that I had to develop something that met the unique complexity of their eyes. I wanted the design to work, not just in terms of the eye-to-lens relationship, but also on a human level. Whatever it was, it had to be fast. As physicians, we can make our patients crazy when we don’t have answers. I wanted to be able to say: “This is what’s going to happen next.”
A human(e) approach
This drive to do better for my patients formed the foundation for the EyePrintPRO, an optically clear prosthetic scleral device designed to match the exact contours of each individual eye. We take an impression of the eye, and then use high-resolution instrumentation to develop a 3D model that can be used to create a custom lens – in as little as two days.
Like all good ideas, it took significant time and effort to get where we are today. And I am very fortunate that I have always had patients with patience! One patient in particular had keratoconus and wasn’t eligible for a transplant, so we kept trying new things. He was with me through more eye impressions than I like to remember until I finally got “the one.” When we discovered he’d got 20/20 vision using his eye print, he cried – and I sat next to him and cried too.
Making a good impression
The impression process was particularly important to me. Previously, molds were made using alginate, which was uncomfortable and painful for the patient. By using polyvinyl siloxanes, we found we could still capture the eye’s precise curvature, without any discomfort. Patients actually call it “cool blue goo.” It doesn’t hurt, it doesn’t need anesthetic, and it doesn’t disrupt anything on the surface of the eye. Not only that, the impressions can be done anywhere. I’ve gone to the bedside of quadriplegic patients, I’ve gone into operating rooms, I’ve gone into the field – and I’ve even done impressions at parties. We can go where people don’t have high-tech devices and high-tech scanners, and offer world-class healthcare in a very affordable way.
Once the impression is taken, it is sent for digitizing. We use the latest 3D scanning technology and numerically controlled machining systems to get an exact match of the individual cornea and sclera. Because each lens is custom, it allows us to use really unique optics on the device – and not just in the center as with other lenses. I can put higher order aberrations on the lens, I can put prism in any direction, I can put a multifocal on the lens, I can do torics – I can even do them all at the same time. And the best part? It all happens so quickly. We use a virtual eyeball to do a theoretical fit to get the best alignment, the best optics, the best comfort – 95 percent of lenses are completed within two attempts. Compare that process with current pre-manufactured designs that use trial and error to find the best fit.
My patients aren’t eyeballs in a chair, they are people – and it’s always important to remember that. Because what they want to do – their goals in life – will determine what choices we make together. Oftentimes, there are several different routes we could take, but I can’t advise somebody unless I know what’s really important them. And that makes it a very personal journey.
Take Crystal. Her story is unique. By getting to know it, and her, we were able to find a solution. And I’m happy to say her vision is now as fabulous as she is! She has such a positive attitude, despite everything that has happened to her. When I see her, I also see the five-year-old boy who gave his cornea so that Crystal could see. I choke up when I think about it. What I do, I do for people like him and his mom. I do it for all eye donors.
When it comes to my patients, I know I’ve done a good job when they stop talking to me about their eyes and start showing me pictures: “Do you want to see my kids?” – “Do you want to see where I went on vacation?” It means their eyes aren’t their number one concern anymore. I’ve worked myself out of a job – and that, to me, is a huge success.
Crystal Ellis is a volunteer for the Iowa Lions Eye Bank and the Iowa Donor Network.
Christine Sindt is a Director at Contact Lens Service, and a Clinical Professor of Ophthalmology and Visual Sciences at the University of Iowa. Sindt reports that she is Founder of EyePrintProsthetics and co-creator of the EyePrintPRO. Dr Sindt is the inventor and owner of EyePrint Prosthetics.