Keratoconus; my full story so far

Originally posted on My blog:

Hello, I wanted to share my full story so far with having keratoconus. I’ve told separate experiences before but I wanted to do it as a big post from the beginning.

I’ve always had problems with my eyes. I was always told I needed glasses from when I was little, for reading and looking at screens. My opticians said I had a lazy eye so I believed them, despite the fact the glasses were never making a difference. My left eye always used to drift and be unfocused. Glasses just didn’t help.

In the summer of 2013, I noticed I couldn’t see things far away or read things without being right up close. I was told I was short sighted so I wasn’t worried, but even in school I couldn’t see anything on the whiteboard. I went back to the optician and had another eye test. I was very shocked…

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My Life With Keratoconus

Originally posted on wellbeingdawn101:

I have been thinking a lot about my KC today as I have just made an appointment to see my optometrist as I feel like my vision has deteriorated. I just realised I have had KC for around 25 years! It has had a huge impact on my life; it always has done, even as a child before I was diagnosed. When I was 11 I had a regular eye test at school. The optometrist said “read the letters on the chart” and I said “what chart”. From then it got steadily worse. My low vision had a massive impact on my school work, I had to sit at the front of the class and still struggled to read the blackboard and text books. Even with glasses everything was fuzzy around the edges.

I was in my early 20’s when I was diagnosed with Keratoconus, up until then I was…

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13 Month Post-Op (Corneal Transplant Update)

Originally posted on Life's a Performance:

So yesterday it was 13 months since my surgery (yay!).

Today I had the highly awaited appointment with my ophthalmologist.  He was in a good mood today, and soon after we went in he started checking my vision improvement again.  After a bit of tweaking around with the lenses, he was able to achieve a 20/25 (a bit forced, but still 20/25) vision in my right eye.  And so, he finally gave me the green light to have glasses made!  Also, I am allowed to stop using the Lotemax, and only use the Prednisolone if I get sick.  Other than that, I have to use another drops called Tilinol, I believe.

After we paid for the visit, we went to the desk in the waiting room where they order your glasses.  I told the lady I wanted them plastic-y, and that they were kind of wide, so my face…

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50 years with aniridia

Originally posted on Aniridia Network UK:

To discover that your child has been diagnosed with Aniridia is upsetting and stressful.  In 1964 it was devastating.  Diagnosis: blindness, prognosis, no hope.  I have read my recently deceased mothers diaries and her hopelessness, despair and unfounded guilt are etched on every page.

Two years later, pointing at a plane passing over our London back garden, brought my parents untold joy. I wasn’t blind!

Mainstream schooling followed.  I learnt to ride a bike, ignoring frequent crashes, and played outdoors unsupervised, as most children did in the 1970s.  I recall riding at top speed with a group of my friends to the park.  My eyes just never registered with me in my childhood and my parents never over protected me.

Strangely, it wasn’t until senior comprehensive school in 1978 that my parents encountered prejudice, the like unheard of today.  The teachers asked my parents to remove me as my eyes…

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ORGAN DONATION- the gift of sight

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THE GIFT THAT KEEPS ON GIVING

By Central Ohio Lions Eye Bank USA

Organ donation is an act we hear a lot about on a regular basis. But eye donation? Not so much. Donating one’s organs (hearts, kidneys, livers, etc.) can save numerous lives.

‪#‎Myth‬:
Only organs like the heart, kidney and liver can be donated.
‪#‎Fact‬:
Not only organs, but tissues like ‪#‎corneas‬, skin, tendons, bones, veins and heart valves can also be donated.

As an “eye banker” who has spoken to many cornea transplant patients over the last quarter-century, I have come to understand that these transplants are also life-saving in their own way.

THE GIFT OF SIGHT

When people describe the effects of lost or deteriorated vision they often lament the loss of their abilities to read, drive, work, and watch their children and grandchildren at play. Perhaps the scariest loss is that of independence – something that can usher in feelings of helplessness and hopelessness, even trigger clinical depression. The loss of significant quality in one’s life is a profound experience. Can we go on living without sight? Theoretically we certainly can, under most circumstances. But when the quality of life is diminished to the point where a person feels that they can no longer function as in the past, the reality can be devastating.

People with advanced Keratoconus will know this feeling only too well. 1 in 4 people with severe Keratoconus will need a corneal graft or transplant to replace their diseased cornea with a donated healthy cornea.

“I felt like I was reborn”

The truth is that only a small number of patients with vision impairment can be cured by a cornea transplant or corneal graft. But those who can have their sight restored surgically such as those with Keratoconus, thanks to an eye donor frequently refer to the experience as “a miracle.”

“I felt like I was reborn,” cornea transplant patient Robert Eber told me when asked how his corneal transplants affected him. “I had a tremendous burst of energy – a renewed life.”

Only eye donation can make this possible. Eye donors do save lives. While laws about anatomical donation differ among countries, the processes of recovering, preparing, and delivering a cornea for transplantation are largely standardized. Organized eye banking – through groups like the Eye Bank Association of America – has brought a significant measure of safety and quality to these processes.

WHAT ACTUALLY HAPPENS?

When an individual dies who is medically appropriate for eye donation (e.g., within certain age parameters, without transmissible infectious diseases or a history of certain types of eye surgeries), the first consideration is whether there is consent for becoming a donor. Consent has many variations – sometimes it is given by the donor him/herself through a private or government-sponsored donor registry; in some places only the next-of-kin to the donor can grant consent; and elsewhere there are laws that make anatomical donations the regular practice, with exceptions only for individuals who “opt out” of becoming donors. Regardless of the local laws and customs, the eye bank will need to operate under the assurance that recovering donor eyes or corneas is legally permitted.

Once consent has been ascertained, a trained and qualified eye bank technician will need to recover the eyes as soon after death as possible. This is because corneal cells can remain viable – alive and functioning – for only a short period after death has occurred, and it is ideal to be able to preserve the corneas quickly to maintain their health and transplantability. Corneas are typically stored in special media made exclusively for this purpose, often containing antibiotics and anti-osmotics, as well as nutrients, to reduce the likelihood of bacterial infection or swelling of the corneal tissue, and to “feed” the living corneal cells. The eye bank technician may recover only the corneas – which are the thin, clear front “window” of the eyes – or the entire eyes, after which the removal of the cornea from the whole globe will be done under controlled environmental conditions in a laboratory or operating room.

HEALTHY CORNEAS

Before and after placing the corneas into the preservation medium, they will be examined with slit-lamp and specular microscopes. Through these, the technician can see single cells and observe the health of the corneas by calculating a cell count and examining the cells for abnormalities that might lessen their effectiveness as transplant material.

Preserved corneas are typically refrigerated and maintained within a range of a few degrees. The refrigeration unit is equipped with continuous temperature read-out capabilities, carefully calibrated thermometers, and an alarm that will alert the eye bank staff if the temperature should vary outside of the desired range. The prevailing practice is to transplant the corneas as soon as possible after their preservation, but not longer than seven to ten days after the donor’s death.

GETTING THE FACTS

The eye bank must document the donor’s medical history, cause of death, and potential risk for transmitting infectious diseases.
Often a family member or partner of the donor is interviewed to complete a “social/behavioral” history of the donor related to possible health risks. These may include exposure to diseases through travel, sexual activity, or other modes. The donor’s blood is also sampled at the time the eyes or corneas are recovered, and the blood is tested for certain infectious diseases. Additional information must be gathered, such as the results of other types of tests, cultures, and examinations, to determine the donor’s eligibility to provide medically safe transplants. The determination of donor eligibility takes into account all of the data that the eye bank gathers – and this can take several days. If the eye bank finds that the donor meets all of its standard medical requirements, the information is provided to the transplanting surgeon, who is responsible for making the final determination about whether a cornea is suitable for his/her patient’s surgery.

The Eye Bank’s role does not end with the delivery of corneas to the surgical facility. Follow-up with surgeons provides an opportunity to inquire about the success of the transplant, and to take action should a problem arise related to the donor corneal tissue.

SEEING WITH NEW EYES

Eye banking is a process that begins with an eye or cornea donor and ends with a healthy recipient. The “miracle” that offers an opportunity to resume daily tasks and favorite activities, and to clearly see the face of a child or spouse is indeed a life-altering – and some say a life-saving – event.

Post by Central Ohio Lions Eye Bank

Our Twitter is @DonateMyEyesOH

We are on Facebook too- https://www.facebook.com/CentralOhioLionsEyeBank

And our website is www.DonateMyEyes.org

Sign up today and do your part to help others after you have passed.

Three Ways To Help

Register with your GP/ NHS/ state as an organ, eye, and tissue donor.

Inform your family and friends about your decision to donate.

Share with others how to sign up to be a donor.

For more information:
UK- www.organdonation.nhs.uk
USA - http://organdonor.gov

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How to Write a Thank You Letter to Your Donor’s Family

Dweezil1968:

Great post

Originally posted on Living With Keratoconus:

If you’ve had a corneal transplant, you understand that your sight came with a hefty price. For me, it wasn’t until the day after my transplant that it became very real to me just how precious the gift I had just received really was. My doctor shared some details about my tissue donor and gave me the address and phone number to a tissue bank, if I wished to write a thank you note to the family.

It’s one of those things you really don’t know where to begin, you want to say so much and you want to do so much to show how grateful you really are, yet you are limited in what you can do (at least in the US.) I sat with a notebook and a pen for days and still couldn’t come up with the right words.

What if they don’t want to hear from me?

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Keratoconus – My 16 month post graft journey in pictures- Wendy UK

I wanted to put together some pictures of my graft progress over the past 16 month period. I know many of the KCGB members will have seen lots of these photos many times over but I thought what with the group growing so fast & so many new members it might be a nice thing to share.

Sharing our different keratoconus experiences is really important so that fellow kc’ers know that they are not alone!

The pictures start from day one photo being terribly bloodshot as you’d expect moving on to around 3 months when I had my first three sutures removed as they became very loose.

I have also included things like the very large box of eye drops and other eye related things you seem to collect with having a graft & also my eye tattoo which I had done to remember my donor with thanks.

I hope you like the pictures & if you have any questions please feel free to make comments, or join me in the Keratoconus Facebook Group: https://www.facebook.com/groups/keratoconusGB/

Sign up for organ donation and give the #giftofsight

UK

USA

my eye day 1 post graft

my eye day 1 post graft

 

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WP_001959 NHS donor card

Right eye top comparison

Right eye topo comparison

eye tattoo

My eye tattoo

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Long lashes caused by the eye drops

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15 months post graft no stitches Graft with stitches- looking clear

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3 months post graft 3 stitches out graft with stitches

14 months post-graft

14 months post graft

no stitches 15 months post graft

no stitches 15 months post graft

 

Keratoconus- my story by Leonie

Hello everyone,

My name is Leonie, I’m a 23 year old Dutch lady and I have Keratoconus. They found out I have this eye disease when I was about 12. I had been wearing sclerals for almost 3 years, when I was 15 I had to get my first corneal transplant or graft.

When I was 16 I got my second transplant, but things got a little difficult there because on the day I was supposed to get my transplant they found out I have iritis/uveitis. I probably got it in 1998, but back then they never knew what it was.

I had to take a lot of medicine to make sure it wouldn’t flare up in the next few days, before I could even get my transplant. I got my transplant 2 days after the date I was supposed to get it.

I also suffer from depression ever since they found out I have KC, and living with both KC and depression is kind of hard at times. So, I really want to share my story with all of you, because it was and still is (sometimes) an emotional rollercoaster for me.

The gift of sight

When I got a phone call from the hospital telling me they found me a donor, I was happy and sad at the same time. I knew I could finally see properly again because of this beautiful person, donating his/her cornea to me, but I also knew a family somewhere in the same country as me was going through hell because they lost a loved one. Mixed feelings. I was only 15, my donor had to be younger than 25 so maybe he or she was still a kid too… Not a comforting idea at all.

I’m still very thankful for this person being brave enough to donate his or her cornea to me. The family wanted to stay anonymous so I could never thank them.

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So I’ll just say it again:

Thank you so much for giving me this opportunity! You really changed my life.

The days went by very fast and I was super nervous and excited; within a year I could finally see better again! But on the other hand I was kind of scared too because I didn’t really know what to expect. I prepared myself for what was coming but I didn’t really know where to prepare for. Yeah of course they told me everything over and over again and what I could expect and how things would go in the next few months, but theoretical things are always different than when it actually happens. I didn’t know anyone else with KC and I never told my family how I felt about all of this, how nervous and scared I was, I just dealt with it myself.

It had a huge impact on my life and I only made it harder for myself by not talking about it, I didn’t do it on purpose but I just didn’t know how to express myself so I just didn’t.

The next few years after my surgery were hard for me as well, because I still would never talk about it, when people asked me about my eyes and how I felt I would always tell them I was doing fine, talk about it as if it was a very common problem and not a big deal at all. But getting a transplant kind of is a big deal, isn’t it?

When I woke up from surgery my eye felt really sore and uncomfortable, but other than that and a massive headache, I felt pretty good. This was a beginning of a new chapter in my life.

I must admit that I forgot how a lot of things went after my surgery, because time was going by super fast. It was 7 years ago, I was young and this is the first time I’m talking about my life with KC like I’m doing right now.

Regaining my sight

I can remember how it was to see my sight change though, that’s something I will never forget. It was amazing! As time passed, I could see everything more clear again, I noticed how many different colours and shapes there were,

I could see depth again. Everything was so beautiful. Everything was so noticeable. It was such a relief to see like this again after all these years.

A lot of eyedrops, creams and other medicine have been used in the first few years, it was a pain in the ass at times but it paid off in the end; healthy and clear transplants!

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Now 7 years after my surgery I’m still very thankful I got a second chance with my eye sight. Not everyone gets a second chance. I still have difficulties going on with my eyes, and expressing myself, and enjoying things.

But I’m still super happy I got my transplants. I still need to wear scleral contact lenses. And no, I still don’t have a perfect sight, and everything can be super frustrating, but at least I can see more now than I could when I was 12.

 Leonie

@marielleonie find me on Twitter with the #kcfamily

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