Through the Eyes of Others

My very earliest memories as a small child are of doctors dilating and photographing my eyes at the Naval Hospital. My right eye was of great interest to them because it exhibits a birth defect found in only six out of 10,000 births. Throughout the next fifty years doctors would remind me over and over, “if anything happens to your good eye you will be legally blind.” I did not imagine that one day my only hope of vision would be through the eyes of others.

Things began to change in the summer of 2007. I noticed that my vision would start out the day foggy and then clear up around lunch time. At first I thought this was simply early morning fog. The fog was there pretty much every day though.

I mentioned the foggy morning vision to my ophthalmologist at every eye appointment for the next three years. He prescribed some Tobradex and said it was probably allergies or dry eye. The Tobradex did not help so I stopped using it. I had no way of knowing that something important was being missed each year… Fuchs disease occurs in only about five out of every 1,000 people. Many ophthalmologists may not identify this condition.

I changed jobs in 2010. A benefit at the new job was supplemental vision insurance. The only downside was that I needed to change doctors. I reluctantly made an appointment with a new ophthalmologist. The new doctor had just finished medical school about two years prior. During my first eye exam she immediately asked me if I was aware that I had Fuch’s disease? I answered “no,” this was the first I had heard of this. She said many people are able to get by with just some ointment or drops.

Dr. Jill Scullion recommended that I try some over the counter drops called MURO 128. MURO 128 is a simple drop made of water and sodium chloride. Immediately after starting the drops my vision cleared up. I was willing to endure the burning pain as the drops were instilled as a consequence of better vision.

I take my vision very seriously with depending so much on one eye. I decided that I needed to research this Fuch’s condition. Fuch’s is a hereditary disease, meaning it is inherited from the parents. Not every generation will develop the condition. My genetic combination of Fuch’s and Coloboma is very rare. I asked Dr. Voelker, a noted geneticist what the odds are of such a combination. He calculated it as happening about 24 times per million humans. In other words, quite rare, and a challenge for even a gifted surgeon.

I read that the Fuch’s condition can be stable or become progressively worse. The only treatment for Fuch’s aside from MURO is a corneal transplant. This is very scary stuff for someone with one eye. My hopes were for a “stable” condition.

By 2011, the MURO drops were no longer enough. I switched to using the MURO 128 ointment at night. This provided very good results with clear vision in the mornings.

Another two years passed. Dr Scullion moved away. Another doctor at the practice examined me in the summer of 2013. My vision was getting much worse. By this time I was doing the MURO ointment at night and the MURO drops throughout the day. Dr. Sie asked me if I would like to look at a corneal transplant? I was shocked. A transplant? Me? What if something happened to my only eye with useful vision? Using the MURO and a stronger eyeglasses prescription I was able to function, mostly. Driving at night was becoming difficult. Halos around the headlights and glare made it very tough to see.

In May of 2014, I visited Dr. Sie again. He mentioned I had beginning cataracts and that I would likely need surgery within two years. He mentioned all eye surgery carries a risk, and advised that I should wait as long as possible. To someone with one useful eye, even a five percent risk is a lot. My vision was close to being bad enough to lose my driving privileges at this time.

During the May 2014 visit there was more bad news. Dr. Sie mentioned that I had blisters on both of my corneas. I had noticed the painful sensations beginning. The pain was very bad, similar to glass or grit in the eye and it never stopped. Dr. Sie again asked me if I wanted to look at a corneal transplant? To me, if a cataract operation was risky, a corneal transplant seemed even more so. If the doctor was recommending waiting on the cataracts, my logic was that I should also wait to consider a transplant.

To someone losing vision or facing that loss every day of eyesight is precious.  Even six more months of vision, such as it was,  is priceless. Considering the chance of blindness and my strong desire to have a few more months of vision, I chose to wait. In retrospect this was a very bad decision. Each blister damages the cornea leaving scar tissue.

photo of my cornea with blisters

Photo of my cornea with blisters

In the later, advanced stages of Fuch’s disease painful blisters can erupt on the eye’s cornea as they swell. My recommendation now to anyone with Fuch’s and blisters, is that you should immediately begin looking for a surgeon to do one of the later types of transplants. These are not your average corneal surgeons. Fuch’s is a relatively rare disease, and experienced doctors specializing in the later transplants can be hard to find.

The summer of 2014 was a turning point. I developed a ritual of ointment and drops every morning in an effort to function. I would do the MURO 128 ointment at night. I would then get up at 4:30 AM every morning and immediately begin putting in five drops of the MURO 128 salt drops over a 30 minute period. I can’t describe how bad it feels to put the MURO (salt water solution) into open blisters in the eyes. I was enduring continuous pain.

I decided to see a doctor for a corneal transplant. I did a little research into surgeons and settled on one at a large medical university here in North Carolina. There was a three month waiting list. The wait was very bad because my college teaching started back in August. I would have to function somehow until September.

By August I had four blisters on each eye. Driving at night was something to be avoided. To drive during the day in bright sunshine required dark glasses. Even with the glasses I had to cup my hands around my eyes to eliminate the glare. The pain level was very bad all the time. I was counting the days until the appointment with the surgeon.

September arrived. My wife, Kat drove me two hours to the appointment. We spent six hours moving from one test to another at the University. I was so disappointed that the surgeon I had waited three months to see spent a total of about six minutes with me out of the whole six hour visit. Worse yet, he got up and walked out while I was still asking questions – and I did not have that many questions. We were left to try to get answers from an intern. If I was treated this badly prior to a transplant, what would it be like afterward or if something went wrong?

Unfortunately the surgeon at the big NC medical school also told me that he would only do the corneal transplant. He said that I would have to come back in two years for the cataract surgery. I told him that I had read that cataract surgery sometimes damages the cornea, and can actually cause Fuch’s. He said, “yes, but we can minimize the risk with laser cataract surgery. “

I scheduled the transplant at the big university hospital only as a fall-back plan of last resort. During the drive home I reflected on how things went. What little research I had done mentioned that many surgeons do the cataract surgery at the same time as the corneal transplant. This seemed like a good plan because of risking infection or damage to my good eye once instead of enduring two operations full of tremendous stress for me worrying if I would be able to see when this was all over.

I spent the next weeks looking for another surgeon and doing more research. We also visited another surgeon who was fairly close by. All the surgeons I saw in North Carolina were doing the older style corneal transplant called a DSAEK. I was told the DSAEK transplant has a one out of four failure rate at the end of year three for all surgeries. In addition, both surgeons I had seen were going to put stitches in which also cause inflammation raising the risk of rejection. When I asked these surgeons about the newer DMEK transplant procedure their reply was that it was too risky.

I did a great deal of research into corneal transplants. The two most common transplants were the older DSAEK and the newer DMEK. With the DSAEK transplant more tissue is transplanted, causing the rejection rate to be higher. The DSAEK does not provide as good of visual outcomes as the newer DMEK transplant. When done correctly, it is almost impossible to tell that a person has had a DMEK transplant because the eye is anatomically correct – not so with the older DSAEK.

Being a professor, I decided to do a literature search. My idea was that I would consider surgeons whose names occurred frequently in papers about the latest type of corneal transplant, the DMEK. The DMEK is a more challenging transplant procedure. The tissue is very, very thin. The odds of a DMEK transplant rejection are 25 times less than with the DSAEK. The DMEK is an amazing procedure, but it requires a very experienced and skilled surgeon. I wanted a surgeon who does a reasonable number of these procedures and has been doing them for a few years.

Several names made it to the top in my search. Of the three top surgeons on my list, one had actually authored papers with Dr. Melles. Dr. Melles in the Netherlands is the father of all modern corneal transplant procedures. In other words, Dr. Melles wrote the book on the DMEK, literally. My thought was that someone co-authoring research with Dr. Melles and located in the USA would be worth visiting. This is how I found Dr. Parker, the surgeon who saved me. There was a three week wait for an appointment with Dr. Parker. It was a very long three weeks in pain and struggling to function.

During this wait I worried over whether to pursue the DMEK procedure having only one useful eye, especially after the doctors in NC telling me it was too risky. I was worrying a lot. I emailed Dr. Parker on a Friday evening. To my amazement I received a reply at 5 AM on the following Saturday morning.

Dr. Melles DMEK book

Dr. Melles DMEK book

Dr. Parker was in London with Dr. Melles for the release of a new book detailing how to perform the DMEK transplant. He replied to me recommending the DMEK procedure in my case from the hotel in London on a Saturday morning. I felt very special to be treated this way.

Our pastor met with our family during the three week wait until my appointment with Dr. Parker in Alabama. I told the pastor that I was worried I would be an extreme burden on my wife and children if I were to be blind. It seemed impossible to me that I would be able to contribute anything to my family or society as my vision deteriorated. I could not understand how I could teach computer science in this condition, or even do mundane tasks. My parents had always told me that an education is something no one can take away from you, but it seemed to me that my master’s degree that I worked so hard for would not be worth very much to me in this condition. My faith, and the continuous love and support from my wife, Kat and my children kept me going through this difficult time.

In September my vision was so bad that I had trouble seeing to cross the street. I was still teaching a full course load in college – five classes. I knew my teaching days were coming to an end unless things changed. The pain was intense. I was only able to see to operate my computer with the screen magnifier on and many other tricks. I helped my students by asking them what was on their screen and then provided verbal guidance to them. I was thankful for my years of experience and memory of the program screens – I never missed a beat helping a student through a task, much to my amazement.

Every day at work was incredibly stressful for me. One morning in September, the classroom computer was completely turned off. It was an all black Dell. The power switch was black too. I felt the whole front of the computer for several minutes before finally feeling the indentation for the switch. Such a struggle just to turn the computer on with such poor vision. It was apparent to me that if turning the computer on was such a challenge what were my chances of successfully teaching computer classes? Somehow I made it through each day with very happy students and was even nominated for excellence in teaching.

The stress was not only at work.  Also during September I needed to stop at the grocery store while taking my seven year old home.  It was about 6 PM, I had about 30 minutes of daylight left — plenty of time to get home before dark — I thought.  While we were in the checkout lane my daughter announced that she needed to go to the restroom.  When we finally finished in the store it was dusk.  Somehow I made it home as the last light faded, just barely.

I was pleased to find that Dr. Parker’s office at the University of Alabama Birmingham was located where I could actually ride the Amtrak train to visit him. This was a very big deal because there was no way for me to drive to Alabama with my vision. I could not read the road signs. I was not sure my wife would be able to take me to Alabama with two children in school and having just started a new job.

Dr. Parker was able to see me on October 3rd. My whole family went to the appointment, it was Fall break for my children luckily. Kat found a suite at the Residence Inn in Birmingham. It was three blocks from the Callahan Eye Hospital where Dr. Parker is located. The Callahan Eye Hospital is one of only two Level 1 Eye Hospitals in the entire United States. The hospital even has a 24 hour eye emergency room.

During our stay at the Residence Inn I was reminded just how bad my vision had become. Kat and I were getting on the elevator when she decided to stop at the front desk. Before I could react, the elevator doors closed. I tried to read the buttons on the elevator, but there was not enough contrast between the black lettering and the stainless finish. I could not read the braille dots, so I was trapped. There was nothing for me to do except wait for someone to call the elevator to another floor. When that happened I asked the person to press the second floor button for me.

From the moment we set foot in Dr. Parker’s office door we were treated like family. Dr. Parker’s wife, Bonnie is the office manager. Dr. Parker spent an hour and a half personally examining me. He then sent me down for some laser scans of my eyes in the Eye Hospital. When we came back he needed to see more of the scans, so he went down to examine them himself. He then came back and spent another half hour with us. All told, over two hours. I was never turned over to an intern or a teaching fellow.

I learned Dr. Parker would do what is called a triple operation on both of my eyes. The triple is a cataract, a lens implant, and a corneal transplant all at once. Dr. Parker recommended the very latest transplant, the DMEK. He had been doing the DMEK since 2011, and this is his preferred procedure, doing several per week. Even better, he was willing to do a triple on each eye two weeks apart. This was a VERY big deal to me because every day was agony at this point. Contrast this with a doctor here in North Carolina that said we needed to wait nine months between transplants.

I can’t describe how happy I was to be able to have the latest transplants two weeks apart. I was overjoyed to have a doctor comfortable with the new DMEK procedure. Plus, I had to face only two operations, instead of four if it were done at the big university here in North Carolina. It was a very easy decision!

Working until the middle of October was a monumental struggle. So many people at the college helped me. One moment that meant so much to me was a simple lunch with the Academic Vice President on October 8th . He took an hour out of his hectic schedule just to show his support to me.

My last day teaching in the Fall of 2014 was October 15th. It was a very difficult day saying goodbye to the students in my five classes, and cleaning out my office. I put a message on the voice mail in a hopeful voice saying I was out until January 2015 due to a serious medical issue. Of course, the unspoken thought was that if something were to go wrong, there was no coming back.

I spent the week before the transplant on my good eye, the only eye with useful vision trying to put my entire life in order. Anyone who has ever tried this will tell you it can’t be done. I changed the oil in the lawn mower by feel – I could not see the drain plug. I felt around the hot engine burning my fingers until I found the plug.

Every spare moment that I had in the week prior to October 28th (my first operation) was spent scanning family photos. I am the last living person in my family. My brother was killed in 1976, both of my parents have passed away, I am the only one left. Who would be able to identify all the people in my family for my two daughters? If I were blind the story of my family would be lost forever.

I scanned photos for hours and hours day after day, reaching several hundred photos. I wrote text files and embedded information into each photo telling something about each person and the place. In the end I had to stop with two boxes to go. At least I tried. It felt good taking the DVDs to the safety deposit box knowing I did my best.

Our country church, Union Lutheran was wonderful to us during this time. We received prayer shawls during the service on October 26th. The whole church prayed for us as we stood up front. It was a very special moment in faith for us. Our church family even took up a love offering for us – two trips, several weeks in a hotel and the medical expenses were difficult. This was a true blessing.

My wife’s parents came up from South Carolina to stay with the children. Kat and I left for Alabama on October 26th. Prior to leaving I had Kat take photos of my daughters. I wondered if I would ever see my children’s faces again. I wanted to have their photos to look at right before my operation.

One of my best friends, Norman was best man at Kat’s and my wedding.  When He learned of my operations he took off from work and  drove three hours from Memphis to have lunch with us in Birmingham the day before my first operation.  Life-long friends do things like that for each other.

I was reminded of the seriousness of my situation at the hospital.  There were the normal forms to sign before an operation, but one was a stark reminder.  It was a form to sign stating that I understood that my only eye with useful vision was being operated on and that I understood this could result in my being legally blind.

I resolved that I would not think of the odds regarding my triple operations. I would simply trust in God to provide the skill and knowledge that Dr. Parker was obviously blessed to have such gifts. I looked at the photos of my daughters and kissed my wife, then was wheeled into the operating room.

I was awake for the transplant. It is not as bad as it sounds. Dr. Parker recommended being awake because the transplanted tissue is very delicate. If I had been given general anesthesia a cough is a common occurrence as the breathing tube is removed. Such a cough could damage my eye. Again, I trusted my doctor’s recommendation.

As with many eye surgeries an air bubble is used to hold tissue in place. On the morning of October 29th Dr. Parker examined my good eye, less than 24 hours after its transplant. He exclaimed “that is a good looking cornea!” A quick vision test looking through the air bubble I was able to read the letters on the 20/50 line. This is outstanding for less than 24 hours after three operations.

We returned to the Residence Inn for another six days. The first 48 hours are critical. This 48 hours, and several days after, must be spent flat on the back waiting for the air bubble to dissipate. No pillows, just nose pointed to the ceiling. If the transplanted graft comes loose then a re-bubble is required. The odds are ¼ for a re-bubble. We will know on November 3rd.

November 3rd arrived. We were still in Birmingham at Dr. Parker’s office does another exam. Dr. Parker announced everything looks great! No re-bubble! A vision test and I am reading 20/25 uncorrected, really 20/20 -2. Outstanding news! Kat and I will get to come home to North Carolina for two weeks before my second transplant (actually triple operation) on my bad eye.

The ten hour drive back to North Carolina was wonderful. I was seeing a new world! The colors were so bright, the black colors were so black, it was almost an overload for my brain to process all the vivid beauty. Kat would find me just staring out the window at my new world. My vision was so good that I helped Kat drive on the way back to North Carolina.

The weeks until my second transplant flew by. I had to take it easy, no bending over, no lifting of anything heavy. And of course being very careful to stay out of dusty environments. It was a very happy time, knowing that I had vision in my good eye, regardless of what might happen in the coming operation on my eye with the birth defect.

People with transplants have a special connection to others. During my time between operations I knew that I needed to send a personal thank you to the family who gave me the gift of vision, free from so much pain. How can a person truly say thank you for such an unconditional act of love to someone they never knew? Regardless, I tried. I wrote a letter to the Alabama Eye Bank to be conveyed to the families.

There were many acts of kindness to us during these months, but one is very special. Kat’s parents could not come back to be with our children for the second transplant. Both children were in school and it would be difficult to have them in Alabama for at least eight days and maybe longer… My friend and co-worker Anne at RCCC offered to keep our daughters for us. As anyone with children knows this is a very big commitment. There is no way to express our gratitude for this kindness to my family.

We left the Residence Inn in Birmingham Alabama on November 18th and headed to the Callahan Eye Hospital for my second round of operations. This eye is very tricky. I knew this going in. The birth defect involves the pupil of the eye. There is not enough tissue structure there for an easy transplant. Dr. Parker took this all in stride. He used an extra implant called a capsular tension ring to provide the needed support and again, everything went perfectly. He later explained to me that many interesting people come to see him.

My second cornea transplant

My Second Cornea Transplant, mouse pointer at the edge of the new tissue

I followed instructions carefully spending many more hours flat on my back listening to audio books. The second triple operation was a complete success! Eight days later Kat and I were home just in time to spend Thanksgiving with our children. There was so much to be thankful for in 2014. I have my life back thanks to the prayers and so many acts of kindness from our friends.

My follow up with Dr. Parker was December 22nd. My oldest daughter and I rode the Amtrak train to Birmingham non-stop from Salisbury. Dr. Parker was very pleased with my progress. He seemed sad to say goodbye and asked if we could take a photo together. A simple message appeared with our photo on the public facebook site for Parker Cornea on December 26th that says so much:

As the year comes to a close, we are so thankful for the opportunities we’ve had to meet and work with special friends we will always cherish.

Dr. John Parker and Ken Clifton

Dr. Parker and Ken Clifton

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Epilogue

I returned to teaching a full course load on January 12th. The classrooms look so different in full color and crystal clear. I feel so blessed to have a normal life again!

A short video about my story video about my story featuring Dr. John Parker can
be viewed at: https://www.youtube.com/watch?v=PMZlEGeEC0Q https://www.youtube.com/watch?v=PMZlEGeEC0Q

17 Comments to “Through the Eyes of Others”

  1. By Bill Plyler, January 24, 2015 @ 2:26 pm

    Thank you so much for sharing your story with us. We were blessed by your struggles and ultimate victory with your eyesight. We will continue to pray for God’s blessing on you and your family.

  2. By Brian E Derby, February 24, 2015 @ 9:21 am

    WOW…That is a completely awesome story of God’s grace and power! See I kept telling you in class that semester to keep having faith that God would see you through this in his own special way whatever that would be and that you had to stay positive and faithful. My family and I prayed for you every day during the process. Even my Mom, Sisters and Brothers, who are scattered up and down the entire east coast were praying for your success. That’s just proof that God is everywhere and hears the prayer of his children , no matter where they are! I’m so happy for you and your family. I have to say that I myself feel blessed for being your friend and not just your student. You’ve always taken interest and very good care of me and I have to say my life and schooling has been better as a result of our friendship. God truly blessed me that first semester 3 years ago when I got you as my instructor for my Intro to Computers class. When I’m asked years from now what Professor had the most profound impact on my education I’ll be proud to say Ken Clifton!

    • By Ken Clifton, February 24, 2015 @ 12:59 pm

      Thanks for those kind words Brian. I wish you continued success in your studies. I am confident you will be a valuable part of a wonderful company soon.

  3. By Ken Clifton, February 26, 2015 @ 10:02 pm

    Here is a link to another example of Dr. Parker and his staff’s devotion to others:
    This is what wonderful people do, giving to those less fortunate, restoring sight to the poor in other countries. I am so proud to be a patient of Dr. Parker.

  4. By Lisa Cline, February 26, 2015 @ 10:46 pm

    Ken, You have and continue to touch so many lives through teaching there is no doubt it was God’s will to make sure you were guided to the Doctor that could restore your vision. Being one of your past students, I can profess to the level of professor you are, which is far above the norm. If ever asked, and I volunteer many times, the professor that I learned and was positively impacted the most from it would be you. I am so very pleased to read your success story and it warms my heart to know you are continuing to share your excellence of teaching.

    • By Ken Clifton, February 27, 2015 @ 7:32 am

      Lisa, I truly appreciate your words of encouragement and support through all of this. I am so happy that you have an important role with the college now. You are making a difference too!
      Considering everything that has to go “right” for any of us to be in the world each new day is a miracle :).

  5. By Joan Creeger, February 27, 2015 @ 7:27 pm

    So happy for you Ken! So truly blessed! For those who do not believe…they should read your story! Welcome back to the classroom!

    • By Ken Clifton, February 27, 2015 @ 8:41 pm

      So good to hear from you Joan. Last year was such a struggle, it is truly a joy to be able to do all the things we take for granted. It is also nice not to have to memorize screens so as to help students from memory :). There were so many people praying for us. As my pastor said, a person can truly feel that presence.

  6. By Carolyn Cassady, May 13, 2015 @ 2:32 am

    Ken, I’m sorry that you’ve gone through so much, but am delighted that it turned out so well for you. I was diagnosed with Fuchs’ during a routine eye exam three years ago. (Perhaps this comes from the McKinney/Flemming side of the family.) I have been very fortunate to have no symptoms to date. But, reading of your experience has made me realize that I need to be vigilant. Thank you for sharing. I wish you and your family all the best. Carolyn

    • By Ken Clifton, May 13, 2015 @ 7:46 am

      Hi Carolyn,
      So nice to hear from you. I am sorry for your diagnosis of Fuch’s Corneal Dystrophy. You are right to be vigilant. I would keep a close watch on the thickness of your cornea(s). A normal cornea is about 500-550, mine were over 700 when I had surgery.
      With the newer transplants, it is important to not let the scaring and blistering go for very long. With the older PK transplants folks would wait until things were very bad. The newer DMEK procedure preserves most of the natural cornea, so you want to take care of them.
      You are very fortunate to be so close to Birmingham! I highly recommend Dr. Parker at UAB. With being so close it would be good to see him just to have a baseline for comparison as the years go by. The Callahan Eye Hospital has very good equipment to establish a baseline record.
      Please take care, and stay in touch.
      Respectfully,
      Ken Clifton

  7. By Mary Sailors, June 16, 2015 @ 8:26 pm

    Ken

    What an incredible story!! I also had Fuch’s and had my eyes done in Feb & May. I had triple DMEKs. I am 20/20 in both eyes.

    My story was not nearly as harrowing as yours. Hearing about those blisters helped spur me to get my surgery before I reached that point. I spent a lot of time considering the fate of going blind and it was definitely something I wanted to avoid.

    Congratulations on your great vision and welcome to the world of being “Fuch’s Free”!!!

    • By Ken Clifton, June 16, 2015 @ 8:48 pm

      Hi Mary,
      Thank you for taking the time to comment. I am very glad that your DMEKs went well for you. It is very good that you did not wait until blisters started. One optometrists said that in his 25 year career he had only seen blisters due to Fuch’s twice, and I was the second time. I wish for continued good results for you.

      Respectfully,
      Ken Clifton

  8. By Ken Clifton, August 8, 2015 @ 11:21 am

    Here is a video of my transplant story: https://youtu.be/PMZlEGeEC0Q
    So fortunate to be helped by Dr. John Parker. I give thanks every day for the gift of vision and for the skill and kindness of Dr. Parker. I think of my eye donors every day. Please remember to become an organ / eye donor to help so many others.

  9. By Ken Clifton, December 25, 2015 @ 2:12 pm

    On this Christmas day 2015, when I awakened I opened two presents — my eyes.

  10. By Ken Clifton, June 28, 2017 @ 9:49 am

    Praise, this morning! I just passed the NC drivers’ license test reading the very bottom line — with NO GLASSES! Remembering where I was almost three years ago before my two DMEKs — this seems like a true miracle to me! I literally could not see to cross the street, four blisters on each eye. To all those suffering out there with Fuchs and kerataconus please keep the faith :).

  • Another Step on the Journey | KENCLIFTON.COM — March 15, 2015 @ 3:00 pm

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