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Monday, December 26, 2011

Another Christmas Done. Another Year of Emotions.

..And another Christmas, thinking of a family that you very likely won't ever get to meet. The family of a person that you know as fact that indeed you will NEVER get to meet. Or say thanks to.

While I had a great time with my family, opening gifts, spending quality time with one another, laughing and just having a great day, that itty-bitty thought came to me of those that I have lost over the years. And of my Donor and their family.

It's been two years of Christmases now since my Donor lost their life for whatever reason, and that I got their selfless act of love and kindness. And still it breaks my heart to know that there will forever be an "empty spot" at their family's table.

But it's gotten easier. And I decided as of last year's Halloween that the best way to honor my Donor and their family, and this great Gift of Sight is to SMILE, be happy, enjoy the time I have with my family and friends, and LIVE my life.

What better way to honor the stranger who had enough love for others, that when their time came, that they gave the ULTIMATE gift? The gift of sight to one or two people. Possibly also giving to at least one to seven more people the Gift of Breathing, the Gift of a healthy heartbeat. Or even the Gift of walking with new tendons, or a Gift of Skin to graft to God-awful and painful burns.

After the new year has passed, I'm seriously considering to write to my Donor Family and update them on the progress of their loved one's cornea and let them know that thanks to this person, my life is finally back to normal. I never received a reply back after the first initial letter, so I'm really not expecting one this time, either. If it happens, that would be wonderful. But like last time, I am not going to hold my breath.

So, to you newbie Cornea Graft Recipients, as I learned (and yes it IS "easier said than done"), do NOT feel sad about having to get that tissue as to save your sight. Especially if it was so close to the holidays (Thanksgiving, Christmas and Hanukkah). Because we didn't "steal" or "take away" anything. We were given one of the GREATEST Christmas/Hanukkah gifts, even if a bit early, that anyone could give and receive. We have our sight back! It may not be perfect right now, especially if recently done. But still, we have our eye(s) and we can SEE.

What greater gift than the gift of unselfish and unconditional love, compassion and giving to others in need is there? Especially from those that made the loving decision to become Organ/Eye/Tissue Donors?

Sunday, December 11, 2011

Emotional Times... Tissues Have Them, Too.

When everything had happened and my cornea perforated, thanks to my own stupidity in the end of it all (knuckle slipped from my brow and BAM!), all I felt was fear and anxiety.

I didn't know what was going to happen next. Was surgery going to be needed? Will I have an eyeball? What happened next?... Those questions haunted me daily all the way up through my transplant surgery.

Then, the anger started. I was mad at myself. I played the "should haves" and the "what ifs". And they all were aimed at myself. If only I had gotten the skin condition treated sooner. If only I had gone to a better doctor in the first place over the reoccurring eye infections.

There were SO many things I should have, and could have, done different. Then maybe, I would not be where I ended up.

After the surgery, and about a month of recuperation, I started having bouts of depression. It was nearing Thanksgiving (my surgery was 2 days before Halloween and is an entirely different entry altogether) and I had to go in to see my Corneal Specialist for a check-up.

Out of the blue, I started to bawl. I cried so bad, I think that the poor guy was scared I'd pop a stitch and raise my optic pressure through the roof.

Finally, I had blurted it out... Something I had kept silent until that point. I felt guilty. Like I had stolen something. Like because of MY carelessness, someone else had to "pay" to let me make it all right.

I was suffering from Survivor's Guilt. And a nasty case of it, too.

When my first (and only to date) bout of rejection came in January of 2010, I felt that anger boil up inside of me all over again. I was doing EVERYTHING right. My drops, my pills, my shield. No bending or lifting. Still though, I was rejecting.

I was scared to lose this precious gift. And I was scared that I was letting my donor and their family down.

These days, two years and almost two months later, when things (like the popped stitch that infected and abscessed) go wrong, I get scared. And yes, I get angry. Again. But only at myself and my eye.

I AM SCARED all of the time, but try to keep it in the back of my mind, within the deepest depths. I could reject today. Or tomorrow. Maybe not for another 20 years. Or (hope to God) never. But the POSSIBILITY is always there.

Most people that have never had to go through this type of transplant just view it as "just an operation" and "just eye tissue" that happens to be the "most transplanted thing on the body" with the "most success rate".

But it does NOT mean that we are any less vulnerable to our emotions as TRANSPLANT Recipients. It does NOT mean that we are ANY less grateful or appreciative, or mindful of our gift, or of our Donor and their family.

A friend of mine over on FaceBook, that I had met through a Transplant group and has had a Liver Transplant had brought up something that I have never thought of. But after "listening" (AKA reading) about it, it made complete sense.

We all (from corneas to hearts, to lungs to skin grafts) suffer quite possibly from some form/amount of PTSD (Post Traumatic Stress Disorder)... What we went through BEFORE our transplants, going through the transplants knowing that (for most of us) someone had to DIE in order to help us live, and the side effects from post-surgery.

That all combined really takes a toll on the Recipient. Emotionally, mentally and physically. Transplants, even in the most simplest of forms, can honestly take their toll on the patient. And in turn, on their family and caregivers (another post for a later time).

So, know my fellow Corneal Graft brothers and sisters, you are NOT alone in your thoughts and feelings. We are not weak. We are strong. And what WE went through is just as much of a "big deal" as those that get a heart, a liver or a lung. Our sight was saved. And our lives were made better.

Because our Donors and their families gave the ultimate gift one can ever receive. The Gift of Sight, and of a better life.

Thursday, December 8, 2011


Cataracts are something that old people get as they age. Normally starting at around sixty-years-old. Right?


I'm almost thirty-five and I have a cataract.

What are cataracts? Well, Mayo Clinic as...

"A cataract is a clouding of the normally clear lens of your eye. For people who have cataracts, seeing through cloudy lenses is a bit like looking through a frosty or fogged-up window. Clouded vision caused by cataracts can make it more difficult to read, drive a car — especially at night — or see the expression on a friend's face.

Most cataracts develop slowly and don't disturb your eyesight early on. But with time, cataracts will eventually interfere with your vision.

At first, stronger lighting and eyeglasses can help you deal with cataracts. But if impaired vision interferes with your usual activities, you might need cataract surgery. Fortunately, cataract surgery is generally a safe, effective procedure."

Eventually, I will have to get the cataract removed and have an "implant" lens placed in.

These are actually quite common for those of us that have required a Corneal Transplant. NOT EVERYONE who has a Keratoplasty procedure will develop a cloudy lens.

But after having a nasty skin infection go ocular, eating away the cornea, having punctured a hole through the cornea that was left and then having the grafting, it's really and honestly no surprise that I have gotten a cataract developing.

What the real surprise happened to be was, is that it took AT LEAST a month for mine to even develop and show within my eye. The doctors had said that "normally", they would show up within not even a week after the surgery to replace the cornea was performed.

Again, EVERYONE is different. No one can say (expert-wise) for certain, if you will develop a cataract, when it will start to, or how fast it will grow and worsen, speeding up the time for removal.

Wednesday, December 7, 2011

Transplanted (literally lol) post from main blog... "Putting My Worst Face Foward"

As a means to kick start this new blog page, I figured I would serve it well by making it a "transplant recipient" as well. Of a post I happened to actually write up YESTERDAY of all things (lol)...

I didn't always see myself as "pretty". In honestly any sense of the word.

I was your average American tomboy girl. I loved being barefoot, in jeans or shorts and a comfy shirt. I hated dresses and makeup. In fact, I rarely, if ever wear either of the latter to this day. And I'm about to turn thirty-five.

As a teen, I had your basic teen acne. Or so I'd thought. I had some pretty icky breakouts. Especially around the time of a hormonal flux at the nearing of my menstrual cycle.

After years of trying everything, by my 19th birthday, it all just went away. I went on with my life. Had gotten married, had a child, divorced. Remarried, had two more children. Also I'd lost a child in between the middle and youngest.

That's also when my breakouts came back. Right near the loss of that baby in 2003. And they came back with a vengeance.

After having my youngest child, who is now seven years old, and in the First Grade, things only had become worse. But I figured that over time, with my hormones getting back to a normal level, everything would just clear up again.

Oh how WRONG was I with that assumption. If anything, they had become worse.

By the time she was a year old, my face went to looking like this with Rosacea...

And yes, it steadily got worse than this. To the point that it hurt me emotionally, psychologically and even socially.

I hated leaving my home. I didn't like to be out in public. Not looking like that! People would stare. Little children would ask what happened to my face, as they pointed and had that look of disgust upon their faces.

There were times that I was even embarrassed to be around my family, wondering what they thought of how I looked. On occasion certain members of the family would "grill" me on what I ate, what I used to clean my face and whatnot.

I did NOTHING wrong. I ate NOTHING wrong. It was NOT my fault. But it certainly felt like I did SOMETHING wrong.

Eventually the Rosacea went in to an area of the body I had NEVER heard of it even being possible.

My eyes. But it primarily attacked my left eyeball. And I went to a Ophthalmologist who sadly MISTREATED me for the wrong infection. In the end, the Ocular Rosacea (Subtype 4) ate away most of the cornea (outer window of the pupil that is your eye's lens) in the left eye.

At times, my face looked like this man's...

And yes, my eye would like like the one in this picture...

In the end, after my cornea had perforated (had a hole in it), I looked like this..

Not even two weeks later, thanks to Ocular Rosacea eating away my cornea, I had no choice but to have an emergency-based Corneal Transplant (Keratoplasty) and required a full graft of another person's cornea after they had died and were an organ/tissue donor.

Here I am 2-weeks post-op...

And here I am 2 YEARS later...

As for the Rosacea, it is now under control!! I am on Doxycycline pills. And will most likely be on and off of them for the rest of my life.

Plus, soon, seeing as I can no longer have children, we are going to try a cream medication after removing me from the Doxycycline pills in a few months. And if need be, I may even end up being on both to ensure that when I have an "attack of the pimple kind", it will not be that bad, and will be staved off from being inside my eye.

Here I am today, pimple/Rosacea free (for the most part)...

I still have breakouts. Mainly around my cycle. But it's now just a bump here and a bump there. Yes, they CAN be painful, swelled and very red. But at least I'm NOWHERE near as horrible looking as back in the time of my youngest being a baby.

I'm more confident, knowledgeable about my conditions and am no longer afraid to walk out of my home, only to face ridicule from strangers young and old.