Ever wondered what it’s like being a person who has received a donor organ (or tissue)? I believe that there is no greater gift than an organ given to someone in need. And since we are currently in December, the season of Christmas and giving, I thought it was an appropriate topic to discuss!
I know that the topic of organ donation can be a thorny issue. There are many people out there with strong opinions, both for and against, about becoming an organ or tissue donor. I want to share my own story as a recipient.
Let’s just think of it as a lead up to **Jenny’s Public Service Announcement**, shall we?
Recently I had a check-up at appointment with my doctor at the eye clinic where I had a cornea transplant in May. Happily I can report that my eye looks great, all parts are exactly where they should be and my vision remains hugely improved. THANK GOODNESS. *Happy dance*
“Steady on!” I hear you say. You had a transplant? Of the cornea? At your sweet and tender age as a 40-something year old woman? Isn’t that just for old people? Yes, yes indeedy, I did. And no, apparently not. As evidenced by my eyeball. Yes, cornea problems are usually reserved for those in their 50s, 60s and beyond. But not for this chickadee here.
So what transplant did I have? And why? And why might this be relevant for anyone else? Why might you care? — Never fear: there are no graphic details or photos in this post! –Let’s travel back in time a little…. I have been wearing glasses for about 20 years now. At first they were just for long-distance stuff, like driving, actually seeing the screen at the cinemas, and surviving crowded lecture halls at university. Otherwise the glasses were tucked away snuggly in their case. Over the years I needed to wear them more and more, until it became necessary to wear them all day long, no matter the task. For a long time I would describe my eyes as being pretty light-sensitive and progressed to not being able to survive my native Australian summer without sunglasses perched on my nose. I never would have thought that it meant anything. Well who knows? Perhaps it, did, perhaps it didn’t.
Then the last few years I found that lights from other cars when driving at night drove me crazy. And then there was the feeling that my glasses were just not strong enough anymore, despite all reassurances from my ophthalmologist at my regular appointments that my glasses prescription was just fine, thank you ma’am.
Then about 2 years ago I noticed a couple of weird(er) things.
One was, that everything I viewed seemed to have a sort of smeary greyness to it. Like I needed to clean the fingerprints and smudges from my glasses. But it wasn’t my glasses. No matter how nicely I polished them up, that greyish fog was still there in every direction. Sure, I could see colours. But somehow they were just… smeared.
The other thing was, that I just couldn’t get a sharp image while focussing on something far away, even if it was just our TV at night whilst slouched on the sofa. I would have to constantly blink, or look sideways for a second, or widen my eyes in the hope of getting a sharp image. Sadly the focus only lasted a few seconds. Then I would have to get those eye calisthenics happening again. Focus-squint-blink-stretch-repeat. Man was that annoying! And worrying. WTH did it all mean? And why did my glasses not do their damn job?!?
Fast forward to March 2017. At my regular check-up, that same ophthalmologist casually asked me whether any of my family members had eye problems (yes, my mother has had cataract surgery). Then he bluntly announced that I had Fuchs’ Dystrophy, that it was too far advanced for any medicine he could prescribe, that a cornea transplantwas my only option and that I would have to go to a specialist hospital clinic for said operation. Then with an outstanding display of expert German efficiency, the consultation ended abruptly with a “Sorry to tell you that” and a handshake.
Er… What just happened?!? Wow! Talk about a slap in the face.
I am going to assume that most people have never heard of this , so allow me a few moments to summarise what Fuchs’ Dystrophy actually is!
Fuchs’s Dystrophy is a disease of the cornea. (https://medlineplus.gov/ency/article/007295.htm)
**Fun fact** #1: The cornea is the clear layer covering the front of the eye.
In short, the cells in one of the layers of the cornea die off and stop functioning the way they should, leading to vision problems.
It is often inherited .(I have since discovered that my mother, an aunt and a cousin have all also been diagnosed but required no treatment).
It is more common in females than males.
It is degenerative, meaning that it gets worse over time.
Although it can be diagnosed in people in their 30s or 40s, any medical website will tell you that vision problems usually DO NOT start until someone is in their 50s or 60s. Yeah right.
Depending on the stage of degeneration, treatment can be as simple as eye drops, or as vital as a corneal transplant. Oh yeah- without treatment you can go blind. Awesome. ☹
Guess where I found myself?
Disease runs in the family? Check!
Female? Check!
Got worse over time? Check!
Diagnosed in my 40s? Check!
No vision problems before 50s or 60s? Tell that to my eyeballs… Fail!
Problem able to be solved with eye drops? Fail!
Transplant only treatment option left? Check!
So, I followed doctor’s orders and attended my appointment at the University Eye Clinic in a nearby city. The Frau Professor Doctor there…
**Fun Fact** #2: did you know in Germany you should say/write each and every one of a person’s academic titles plus either the Mr or Mrs before that?!? My opthamologist at this clinic is a woman, has a doctorate plus is a professor. Therefore all her signs and name badges and how she should be addressed is literally “Frau Professor Doctor…..”. It certainly can be a mouthful for patients addressing highly qualified professionals. That sure is nothing you can spout off quickly! And try remembering to do that in your 2ndlanguage as I (Australian-bred) have to do here!
… Anyway, where was I ??? Oh yeah, so I went to my appointment were all the doom and gloom diagnosis and prognosis and treatment options were confirmed. Given my age for a corneal disease diagnosis was officially classified as “Spring Chicken” I was strongly advised to hold off as long as possible before getting that transplant.
Transplanted organs and tissues don’t last forever. Remember, they were donated, which means they already had some lifespan before being transplanted into a second owner. If I were to have a corneal transplant now, it would be expected to last approximately 10 years before needing to go through the same surgery again. Basically, I would be up for repeat surgeries during my own lifespan.
Nevertheless, my eyesight throughout 2017 continued to deteriorate. The result being that the vision in one of my eyes was so poor, that Frau Prof. Dr. was um-ing and ah-ing about whether I should legally be allowed to continue driving.
Let’s just stop there and ponder. Whether I should still be allowed to drive. Hmm. Sorry lady. I can live without seeing the TV super clearly. I can live without seeing my garden at a distance in 100% focus. But I CAN NOT live without being allowed to drive.
I have 3 kids who each and every day of the week have different schedules, activities, and even schooltimes
**Fun Fact** #3: Did you know in German schools, every single class has different hours on different days. So for example , my daughter in 4th grade has different class hours each of the 5 days a week, which are also not the same as kids in the other 4th grade class, nor are they the same as the class hours my other daughter in 2nd grade has. Tell me that doesn’t make your brain want to burst on a daily basis trying to grasp who finishes at what time.
Anyway, I can’t not be able to drive. Aside from trying to ferry around the 3 kids (see my post “Mum the Taxi”) I also work part-time when my kids are in school. And never mind grocery shopping, my own appointments with doctors and the rest of the stuff in my calendar. You know what it’s like. No driving = massively restricted time frame to do everything that needs to be done for our family.
The threat of not being allowed to drive was the last straw. I told my doctor, sorry, Frau Professor Doctor, that the transplant needs to happen. Soon.
Within 2 months of agreeing to go ahead with a cornea transplant I was contorted in a dentist-like surgical chair, with a big fat black “X marks the spot” (literally) next to my more severely-affected eye. Why only 1 eye at a time? Because of the standard “all surgeries come with risk” that should all hell break loose, I would still have 1 eye remaining. And why the X? Patients under general anaesthetic can’t confirm to the surgeon which eye requires the transplant 😉
The entire process was terrifying, intimidating and also full of uncertainty for me. But that’s for a whole other blog post full of anecdotes of me with an eyepatch and a crapload of eyedrops to use.
But for me it was SO worth it. My vision in the eye with the fancy shmancy new cornea is outstanding. Even the staff are excited about the results. In a matter of months I went from nearly not being allowed to steer a vehicle to actually not needing corrective lenses on that eye for driving at all.
Why did I just write all about my vision problems, cornea transplant and a whole lot of rambling inbetween?
The gratitude I feel towards the anonymous donor of the cornea now in my eye is immeasurable. Without a donor cornea I would not be able to drive, enjoy going to the movies, recognise people on the streets when out in town and instead potentially be going slowly blind.
It hurts my heart to know that this could have been my fate. I wouldn’t have been able to enjoy seeing my children grow up. Or the sunflowers in the garden in summer. Or the snow fluttering down in winter. Or carry on my hobbies, like photography and sewing. Sure, I wouldn’t have died, like someone who doesn’t get a heart or lung transplant in time. But man, what a massive, major life adjustment that would have been. Thank heavens that is not the case. Better yet, thank heavens for the donor and their generosity.
As you can probably guess, I am PRO organ donation. I always was and certainly now will remain so.
As for **Jenny’s Public Service Announcement**… A lot of people donate blood (for example through Red Cross). We all know that this can life-saving. At no cost to us, we be part of a team to help a complete stranger become healthy again.
Imagine what a difference you can make in the life of another human being by agreeing to donate organs or tissues after your death.
Most countries in the world have either an official registry (such as Australia https://www2.medicareaustralia.gov.au/pext/registerAodr/Pages/DonorRegistration.jsp or in the USA https://www.organdonor.gov/register.html) or at least a donor card when you can fill out your wishes for what should happen to your organs and tissues in the event of death (like here in Germany https://www.organspende-info.de/)
For someone like me, receiving a tissue donation meant that I could avoid going blind. For someone who is ill or seriously injured, an organ or tissue donation can be a matter of life or death.
I ask that if you haven’t already decided to become a registered organ donor, that you spend time considering the value of “giving the gift of life”.
**Jenny’s Public Service Announcement**: Over and Out!
Have you been the recipient of any kind of transplant? Are you a registered donor? If so, what made you decide to be a donor? If not, can you imagine ever changing your mind? I would love to hear some comments here. But please remember to remain respectful of alternative points of view- haters are not welcome here 😉