Krista's Cornea Recipient!

After Krista was and organ donor I have had the privilege to meet other organ donor families and many recipients through many different events over the years.  I spoke at an appreciation dinner for health care professionals involved in the organ donation process and it was a chance for me to thank them for the care and professionalism they showed to our family as we made the decision to donate Krista's organs and tissues.  At this dinner I heard a young recipient speak about how she could see because she had received a cornea transplant.  It was an amazing story.  I was actually sitting at the same table as her surgeon and it was so cool to see the happiness in his eyes as he saw the results of his skilled hand.  He had helped someone see again!  

It was interesting to me the dates that she had received her cornea.  September 3, 2009.  Krista had passed away on August 31 and it seemed possible to me that this young woman had received Krista's cornea.  Jana and I talked and have stayed in touch over the years.  Always having an inkling that it was Krista's cornea, but never having a definitive answer.  In Canada, there are protocols in order to facilitate a meeting of donor family and recipient.  I had to send a letter to the Organ Donation program, then they would send that letter to the recipient.  The recipient would need to respond through the program and then another letter from me would have to be sent and then responded to.  This is so that if one party isnt emotionally ready to meet that it can be in their own time.

I had meant to send a letter but life was busy and I didn't get around to it until 2015.  I thought that if it was Jana that I would get a letter back quickly because we had talked about it.  I never received anything so I thought we had made a mistake.  Jana recently sent me information that made it clear that it was Krista.  Recipients receive information about their donor and Jana's information said her donor was 34, female, died of a pulmonary embolism, and had died on August 31, 2009.  So Jana contacted the Organ and Tissue program and they found that the letter I had sent had been delivered to the wrong place.  That's why Jana had never received it!  

So I am happy to share that I have met and am so happy for Jana!  It's official that she is the recipient of one of Krista's corneas and she is awesome.  I wanted to share her story.  

This is a speech she gave at an event in 2014 that sums up her story and at the end is the letter she wrote to our family.  It's been a long time coming but I am so happy to share this story.

2014 Organ Donation & Transplantation Speech for the Rocky View Hospital 

Good evening everyone. My name is Jana Van Kasteren. I am 28 years old, and I am a cornea transplant recipient. My transplant journey began in April of 2006. I was 21 years old, I was in school in Lethbridge, and I had my whole life ahead of me. Without a care in the world, I was looking forward to having fun with my friends and taking part time summer school classes.  

That all was brought to an abrupt hault. My left eye started to get very irritated and red, and I thought "oh, I just have a minor eye infection". I imagined I would just go to the eye doctor and get some eye drops and soon it would all be better.  

My optometrist was very concerned and said that he wasn’t sure what was wrong, but I needed to go to an ophthalmologist immediately. Across the city I went to an ophthalmologist. Once again, he wasn’t sure what was wrong but he knew it was something very serious. He got me taking several different eye drops and sent me on my way.  

Within the week it was out of control. This mystery eye infection had completely taken over my left eye and I was totally blind. All I could see was white light. My eye was so sore that I couldn’t even open it, and I couldn’t even be in a room with any kind of light. When I had to go outside to go to my doctors appointments, the light was so excruciating that I could barely lift my head up. When I woke up that day and couldn’t see, I went to my ophthalmologist again and this time he admitted that he really wasn’t sure what was wrong and that I was probably going to lose my eye. He then referred me to Dr. Carlsson, a cornea specialist in Calgary. As soon as I went in to see Dr. Carlsson he knew exactly what was wrong with me.  

I had an extremely rare eye infection called Acanthamoeba Keratitis. It only infects 1 in 1,000,000 people. Acanthamoeba Keratitis is when an amoeba, which is a tiny parasite, latches onto your eye and basically feeds off of it. It is caused by a contact lens wearer getting water behind their contact from a swimming pool, lake, river etc or from wearing their contacts in the shower. In my case, my contact lens solution was contaminated by the manufacturer and wasn’t recalled until almost a year after I got the infection. I soon found out that my eye had gotten so out of control so fast because the eye drops the ophthalmologist gave me were actually feeding the parasite and making it grow faster. Dr. Carlsson immediately told me to stop taking those drops and gave me six new eye drops to take. I had to take my eye drops every hour, but had to space them out 5-10 minutes apart. The result was me putting eye drops in constantly throughout the day. This continued for June, July and August of 2006. It was the most painful thing I have ever experienced in my life and I would never wish it upon anyone.  

In September of 2006 the infection had finally started to come under control and I was able to go back to school. I had to wear an eye patch because the light was still very painful and the eye drops I was taking required me to keep my eye closed after I put them in. At this point, my eye started to develop this white cloudy colored circle that covered my iris and pupil. This white circle was actually a scar that had developed from where the amoeba had eaten through my eye. Because it was scarred, it meant that I could not see anything because it was blocking my pupil and therefore my vision.  

In December of 2006 was when Dr. Carlsson first told me I would need a Cornea Transplant if I ever wanted to see again. Of course, this was quite shocking for me to hear as I never even knew that was possible, let alone possible for me! However, he told me I would have to wait a full year before he would even considered me as a candidate for the transplant list because the Acanthamoeba Keratitis was such a bad infection to have. No matter how many eye drops you use to try kill it off, it can hide in a cyst form to protect itself, and we would need to make sure it wasn’t going to come back and eat my transplant cornea.  

I continued to see Dr. Carlsson about once a month for the next year, still using eye drops, but now only 3 times a day. In October of 2007, Dr. Carlsson told me that the parasite appeared to be gone and he thought I was finally ready to be put on the transplant list. I was so thrilled! I could not believe the day had finally come. It had been such an agonizing year and I was so excited to finally be able to see again. I was thinking to myself "in the next few months i’m going to have the transplant!".  

Unfortunately, I was very wrong. Dr. Carlsson had told me the time frame of the waiting list for a cornea transplant was between tomorrow and 4 years from that day. Since I was only 22 years old though, he told me that I would be near the top of the list.

I continued to see Dr. Carlsson every 6 months and every time he would tell me that they just had not been getting any tissue from donors. This was very discouraging news. I had lost hope and decided that I might as well just get used to being blind in my left eye forever. If I wasn’t feeling beaten up about it enough, I sure was after a few encounters with some very ignorant people. Complete adult strangers would approach me and say "ew, whats wrong with your eye?". This was extremely upsetting to me because there was nothing I could do about it. I didn’t want my eye to look like this, I didn’t ask for this to happen to me. And on top of it all, it was hard to adjust to life with sight from only one eye. With the loss of my depth perception, driving became a real challenge. As well, I lost my peripheral vision so walking into walls was a daily occurence. And of course since my right eye was doing all of the visual intake, it became really strained and the vision in my right eye deteriorated. Thank goodness for my great friends and family who helped keep my spirits up.  

Continuing with school, in April of 2008 I graduated college with a diploma in Massage Therapy. This was a huge accomplishment considering everything I had gone through to get there.  

I went to Dr. Carlsson again in December of 2008 and he once again told me that nobody had donated their eyes. This had become an expected phrase for me to hear, and I would always get extremely upset. He went on to tell me that he could refer me to a colleague of his who was also a cornea specialist. In January of 2009 I met Dr. Al-Ghoul. He checked out my eye and gave me two eye drops, which surprised me since I had not needed eye drops for about a year. I then continued to see him for the next few months and finally in April of 2009 he told me that I could go on his Cornea Transplant list. I asked him approximately how long it would be and he said in the next two months! I was so excited as I never thought it would be that soon! I had waited so long for my transplant and I was just overwhelmed with emotion by this news. I kept asking him "so you are SURE its only 2 months?" and he just kept saying "yes!". Unfortunately it wasn’t 2 months later- but it was 5 months later!  

September 3rd 2009 is a day I will never forget. It started off as any other day and I was on my way to work. At lunch time I went home as I always did and when I came back to work my boss had left me a note on my desk that said "Call Dr.Al-Ghoul". I quickly grabbed the note and ran out the back door with my phone. I called and nobody answered. So I called again....and again....and again. Then Finally somebody answered and asked, "can I put you on hold?". I was on hold for TEN minutes going back and forth in my head, wondering whether or not they were calling me for a transplant. I nearly made myself sick with anticipation waiting on the phone. Then I finally got to speak with the nurse and I will never ever forget those wonderful words she said to me. "Jana, we have tissue for you. Do you want your transplant on Tuesday?". All I could manage to say through my hysterical crying was "yes!". She started to tell me the details and I couldn’t even hear or comprehend anything she was saying. I could not believe this was finally happening. She told me that she would see me Tuesday September 8th and I just fell to the ground crying. I absolutely lost it, overcome with emotion. I was going to be getting my transplant in 5 days. Only 11 days before my 24th birthday! What an amazing gift.  

On the morning of September 8th 2009 my mom and dad drove me downtown to the Holy Cross Centre, which is where I received my transplant. The transplant went really smoothly and I was in and out in no time at all. Dr. Al-Ghoul was really great. During the transplant, He kept asking me if I was ok and he would say "only 20 minutes left, only 10 minutes left, 5 more minutes" which really helped me talk myself through it. All together the whole transplant was about an hour and 15 minutes. The next morning I was expecting my eye to be red and sore and not very nice looking. However, I was completely shocked to find that it looked absolutely perfect! You would never have been able to tell I had had a transplant the day before. Perhaps the most amazing thing about looking at my eye for the first time was the fact that I could see again. Having my depth perception back and being able to see the world more clearly once again. There would be no more walking into walls!

Over the next few months I saw Dr. Al-Ghoul and slowly one by one he took my 17 stitches out of my eye. Every time a stitch was removed my vision improved. There were a few challenges during my recovery. For example, re-teaching my brain to pick up vision from my transplant eye again, as it shut off visual signals from my eye when I could not see out of it for 2.5 years. Even today, I still experience double vision, but i’m hopeful that with modern medical advancements, it will one day go away. Finally, when the last 3 stitches were removed, It was a really incredible feeling to know that my transplant had healed and was now officially a part of me. I am so grateful for this amazing gift. Not a day goes by that I don’t think about my donor and their family. I know it was the hardest decision they ever had to make. You never think that you will be the one needing a transplant. I certainly did not, especially not in my early 20’s, but life doesn’t always turn out the way you expect it to. Because my donor’s family was so brave, selfless and strong, I once again have my sight back. I will never take my sight for granted, and I now know the importance of Organ and Tissue Donation and how much it can dramatically change or improve somebody's life.

I'm now going to read the letter I sent my donor family as I feel it sums up everything I want to say about how grateful I am: 

Dear Family

I am sure this letter may be difficult to read. It is also difficult to write. I've been wanting to write for a while but I never knew how I could possibly write you to thank you, and have you understand HOW grateful and thankful I truly am. "Thank you" is an expression which is used quite often and sometimes just in passing. This is a different kind of "Thank you." How do I say thank you, that means that because of you and your wife, I am able to see?

My promise to you is that I will never take for granted, any one moment of my life.

The importance and immense meaning of the gift you and your wife have given me, truly cannot be expressed in words.

If you can imagine it, before the gift your wife gave me, it was becoming very challenging to do things like reading, driving and enjoying the sunshine.

How do I share with you that you gave me life back? That you gave me a better life? My son and my husband thank you. My friends thank you.

And I think you should know that not one day goes by that I do not think about your kindness, and of the woman who enabled me to see again.

I also want you to know something else.

When I got the call they had found a donor for me, and that this person was a young woman, I cried.

I cried all 5 days from the moment I got the call to the day of the transplant. Not because I was scared or happy. I cried because I knew that on that day, somewhere, a family lost a precious, beloved person in their life.

My heart was with you and is still with you. She is with me, literally, every time I open my eyes.

Please know that your loved one, who gave me the gift of sight, is my hero. I literally owe my life to her and to you, who had the bravery and strength to allow this transplant to take place in the midst of your grief.

Please know that her spirit lives. I hold her in my heart.

I promise to take good care of her. I promise to honor her with everything I do, especially for others who have suffered like me.

With all my heart, I wish you peace, love, and above all, faith in knowing that this beautiful woman has allowed me to see again.