Anniversary of a Transplant

Hello World! Everything’s Famtastic is here! I hope that all is well in your part of the world, wherever that may be.

Looking in the calendar this past week I really just noticed how quickly this year is flying by. I think that’s a grown-up thing, right? As a kid it feels like you wait sooo looong for everything but as an adult *poof* and another year is over.

And then I realised something else. A couple of days away marks the one year anniversary since I had my cornea transplant. And that is even more unbelievable than how quickly the flowers have been blooming this spring!. A whole year since I received the ultimate gift: a cornea from an anonymous donor. ONE YEAR!

I talked about the subject of organ and tissue donation a while back here. I wondered whether any of you out there who might be needing a transplant of some sort just needed to hear that someone else has gone through such surgery and come out stronger on the other side.

Given that my own anniversary of being a recipient is coming up, I thought it might be interesting to share with you a bit more about my personal experience (skipping the more graphic details, I promise 😉).

The Miracle of Organ Donation

Just about any body part can be transplanted these days. From artificial joints (knee replacement, anyone?) to organs donated from deceased or even still living patients (like a kidney donation). Go back a hundred years and if any of your organs failed you, you were dead. End of story. It is completely insane just how far medical technology has progressed and allowed tissue and organ donation to become possible and safe. I mean, who was the first doctor to dream up how to perform eye surgery?!?

Sure, I know a few people in my extended family with artificial knees, hip replacements and even a kidney donation (which is an amazing story in itself!). But all in all, people walking around with “new” body parts are definitely in the minority. Although for medical staff, organ and tissue transplants are everyday and possibly all a bit ho-hum, for the recipients of a transplant it’s a Really. Big. Deal.

Why would someone of my *sprightly* young age even need a cornea transplant anyway? Normally cornea surgery is reserved for those of, ahem, more advanced age. It’s true. But sometimes you just hit the reverse jackpot and inherit some stupid degenerative eye disease anyway and end up with a diagnosis of Fuchs Dystrophy.

The Hospital Admission

So, last May found me checking into the Augenklinik the morning before my planned DMEK cornea transplant surgery, nervous as hell about what the surgery itself would be like and whether or not the transplant would even work. Would the donated cornea tissue even be usable on the day or would surgery be cancelled because the donor tissue too poor in quality? Thousands of questions and worries swirled through my head throughout the admissions process.

If you’ve any had any type of surgery in hospital before, you know what it’s like at admission time: fill out this questionnaire, sign your life away (literally!) on this disclaimer here, sign again to agree to pay the hospital bills, supply your finest urine and blood samples, speak with the intake nurse, chat with the anaesthetist (mine was very chatty indeed, wanted to know all about the east coast of Australia and work possibilities there more than about my surgery), final consult with the Surgeon… And remember, all this was done in German, NOT my mother tongue!

Once I had survived the paperwork challenge, I had one big task left for the day. Get shot. By a laser. In the eye. Let me explain…Because my eye surgery would lead to an increase in pressure in my eyeball, a sort of release valve had to be created. Thus, the need for an iridotomy (Google it for yourself, if you dare!). The surgery the next day was freaking me out enough, but having to sit v e r y s t i l l in front of a laser pointed at your eyeball was bloody awful. After a long and cautious period of lining up where the laser would shoot a hole in my iris, and promises of “No, you won’t feel it”… The laser goes *zap!* and Jenny yelled “OW!!!”. Yes, I felt it.

Afterwards I felt really strongly like I had somehow been violated. I know, there are plenty more other things that can happen to make someone feel violated and I don’t pretend here that this situation was extreme. But I felt how I felt. Perhaps you have felt the same following some medical procedure???

Fast forward to the next day, where my surgery was perpetually delayed delayed and delayed. More than once during the day some nurse came by to ask me which eye required surgery and refresh the black texta *X marks the spot* next to it (just to be sure the surgeon knows where to aim whilst I am under general anaesthetic!).

The Surgery

Early in the afternoon I was transported upstairs to the operating theatre level of the hospital with Hubby by my side. I was SO nervous by this point and SO grateful that he could at least come right up to those final doors to cheer me on. By the time one of the staff came out to ask some final questions I was in tears, I was SO scared. She looks at me, surprised, and asked “Why the tears?!?”. My defiant answer: “Because you are about to cut my eyeball open”.

After that chirpy getting-to-know-you conversation, one teary “*see* you later” farewell with Hubby (get it?!? *SEE* you later?!?) and off through those swinging doors I went. I had assumed I would be lying on some standard, boring, flat, surgical slab. But no. I was to be positioned in the chair of torture (P.S. Not officially called the “chair of torture”). Try to imagine some convoluted combination of a dentist chair and a gynaecological examination chair, just with adjustable parts everywhere. Everything can be moved to make the patient as comfortable as possible, but somehow you still aren’t.

Meet and greet the staff in the operating surgery, more questions, small talk about why someone from Australia would be living here in Germany, more bags of drugs flowing into my veins, eye off all the shiny things around the room and the big TV screen on the wall, some stifling gas mask over the face and then….

Wake up some time later. Feel drowsy. Back feels like it is breaking due to torture chair. Everything looks blurry. Funny that. And then the extra fun part. 4 hours of lying flat on my back, back in my room.

You see, my cornea transplant was not the usual remove-the-entire-cornea-and-slap-in-a-new-one. No. The procedure is called DMEK (again, Google it if you dare). Basically the cornea is made up of a number of layers, but Fuchs Dystrophy only affects the undermost layer. So during DMEK, only that layer is removed and then replaced (*gag*). Because that layer is inserted into the eye, the doctors also shoot in an air bubble underneath it, so that the layer is pressed against the cornea and forces the cells to grow onto it. So that the tissue layer and bubble stay where they should be and don’t slide around (*eew*), the patient, ie me, had to lie for those 4 hours completely flat on my overly-firm hospital bed.

The Aftermath

Torture chair + eye surgery + lying flat on my back + no food for 24 hours= one tearful, frustrated, starving, uncomfortable Jenny. Damn, those 4 hours were THE WORST. All I wanted to do was sit up, curl up on my side, anything but lie there. But was it worth sabotaging the entire purpose of the surgery and my own eyesight? No. So wriggle and complain is what I did.

By the time that 4 hours was up I was so grateful. I was allowed to move! I was allowed to drink! I was allowed to eat! Huzzah! I was helped to sit up unsteadily, told to drink some juice to give me some energy, then try a bite to eat. I did manage to get a couple of bites of bread down. Then promptly ran to the toilet and puked my guts up. Ah, the joys of a general anaesthetic, fasting and poor circulation.

I got to spend the following 6 days in hospital, still flat on my back, in the care of some excellent doctors and nurses and in the company of some white-haired, hard-of-hearing fellow patients. I was given eyedrops aplenty (18 sets a day at the start *gasp*). Over that time I went from looking like a pirate…

to a cyborg…

then eventually (somewhat) like my former self. Except for the remainder of the air bubble you can see floating near the top of my iris 😉.

And then it was finally time for discharge!! I was free to move again!! Er, no actually, that’s incorrect. Although I was discharged from the hospital I was supposed to remain lying flat on my back for a further 2 weeks at home! WTF?!? All true.

Suffice it to say that during my convalescence I meditated a lot and listed to tons of audio books, given that I couldn’t read or even watch TV. I really hadn’t been made aware of just how restricted I would be following the surgery. I am all for relaxing and taking a nap, but 2 weeks on my back seemed pretty ridiculous. Thank goodness for MP3 files and mobile phone apps. I mean it wasn’t all bad. No cooking, no cleaning, no washing…

The Success

So as not to seem ungrateful or a complete sooky whinger, I will say that I am tremendously thankful for my Hubby and the 3 kids for being so helpful, supportive and encouraging throughout those weeks. Had I been single, living here in Germany I would, quite frankly, have been screwed. The medical staff were great and the surgery worked as planned- I can see! I can sew! I can drive! I can practice photography! I can read to my kids!

And there is of course, a special place in my heart for the anonymous donor who allowed me have great eyesight again. Bless all organ donors!

Unfortunately, due to the current health and safety regulations in Germany, having become a transplant recipient means that I am not permitted to be one myself. Not even to donate blood. (But most likely you can!) This does sadden me, but I can definitely be grateful with what I do have and find some other way to help out where help is needed.

Now, this post was way longer than I had planned on it being. I hope that you found it interesting, enlightening or perhaps just comforting. If you find yourself currently going through significant medical problems, transplant or otherwise, I hope that you find some solace in knowing that you are not alone and there are some excellent medical experts out there who can do amazing things to make you healthier and stronger again. ((big hug))

Have you ever received a transplant or even just been terrified of any surgery? What was the hardest thing you had to go through? I’d love to see you share below!