Through A Looking Glass

READ ME!!!! Very Important.

2012-02-01T11:13:00.000-08:00

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LOOKING GLASS BLOG

Mixed Feelings

2012-01-27T12:03:00.000-08:00

Let me say right out the chute that I can NOWHERE imagine what it's like, nor do I honestly want to EVER know what one feels and even maybe thinks from time to time when their life is LITERALLY in another's hands to live themselves. Because they need a solid organ transplant, and at times, it means that another human being must die and be willing to give of themselves.

I belong to several groups over on FaceBook. Including a few regarding Organ/Eye/Tissue Donation Recipients. And I for the most part enjoy being a part of each and every one of them.

But a situation for one member came up where they maybe were able to FINALLY get the organ that they have tried to receive multiple times. Sadly once again, the person was turned down. But not because there was a fellow recipient in waiting, but because of the potential donor and their status not making the organ viable.

I know that we all have within us the fight or flight. And we have this ultimate need, if not even a "requirement" to survive and defeat death.

But to HOPE that once your potential donor is "just right" after having the plug pulled so that they can give you their organ that you (while I understand, desperately) need, then to be "bummed" and outright say that the heart "waited too long" to expire is pretty damn SICK.

It's disheartening to me *personally* to know that while (like I keep repeating) that YOU as one needing a solid organ to give you that second chance at living to your fullest potential, that one takes an almost seemingly "joy" in another's expiration of life.

I'm ALL for wanting to live (or to see, as was my case) again the way you had used to, or at least as close to your normal as you can get. But to pretty much WISH someone dead? Or at least make light of another's suffering? No wonder there are SO many people in the world who view us RECIPIENTS as vultures.

It's because of people like the person I'd described up above.

Those that have died and willed their organs, eyes and tissues have given us all a GIFT. It's not a right or even a "privilege". They were willing to give us new life, new sight and a better quality of life.

While I know all too well the JOY in knowing that your life or your sight is being saved when you get "the call", it SHOULD also be a time to give thanks to your donor. And to think of THEIR FAMILY and their suffering.

And if it doesn't pan out for you with that potential match? Then I say have a little decorum, heart, compassion, and yes, even some COMMON SENSE, as well as decency. As in don't post about how "bummed" you are about the person not dying quick enough for you to grab their parts.

To be that way, to me PERSONALLY, is morbid, insensitive to the one that died and their family, disgusting (to a point) and just plain disrespectful.

Am I wrong in my thoughts and/or my feelings? Maybe. Maybe not. Again, I have never needed a solid organ. But across the board, no matter the type of transplant we have had, or will need, along with it, comes responsibility in the means of SELF CONTROL, empathy and sympathy.

Because our gifts came at a GREAT price. The price of another's life.

Corneal Stitches

2012-01-25T08:15:00.000-08:00

Also known as "Corneal Sutures", they are sewn in as to ensure that the newly transplanted cornea stays in place and attaches well to the rest of your eye as it is supposed to do.

After the surgeon carefully and skillfully lays the cornea in to position, he/she will thread a specialized sewing needle as to begin the suturing process.

The following is a picture of one of the types of needles that they will use on the cornea. It is called a Kalt Corneal Needle.

They will use the claw-like needle to thread the corneal stitches through to attach the new cornea in place.

There are a couple of different variations as to how the stitchings are done. And every doctor has his or her preference. Plus it also depends on the patient and their needs as well.

One is called "Interrupted". Which means that instead of a "zig-zag" effect, there is one line stitchings that kind of resemble the lines around the sun from a child's drawing.

The other suture possibility is called "Continuous". That type of suturing looks (to me) something like a drawing (yep, I'm stuck on kid pictures lol) that a child made, using the old drawing toy called a Spirograph.

Then there are some cases where the doctor uses BOTH of the techniques. In the same eye. Again, it's done on a case-by-case basis.

The following is an example drawing of the sutures that I had described above.

Post transplant, over time as healing progresses and all is well, the Corneal Specialist will look over the eye and eventually decide that it's time to start to remove stitches. But not all are out at once. It's a gradual and even a bit of a tedious process.

When it's time, the doctor will ask for his Nurse Assistant to go grab the removal kit. It will have two things in its sterile packaging. A forceps tool and a blade tool.

These are called a "Meyerhoffer Chalazion Curette". They help (as long as I do indeed have the correct blade) to cut the stitch(es) that the doctor wishes to remove.

The above set of "tweezers" are called "Arruga Curved Capsule Forceps". And hopefully, I do have the correct pair. Once the appropriate stitch(es) have been sliced loose, then the tweezers are used to (gently) pull the stitch out from the cornea and eye area.

Anyway you slice it (get it?? lol) they must use a blade and tweezers to cut and remove the sutures. They are not dissolve-able. So removal is indeed a must.

There are VERY rare occasions though, that do warrant stitches to stay in place for the patient's life.

But before that, they will place in some numbing eye drops and use an eye separator. This way, there is no pain and no chance of you closing down the eye as it is being worked on.

The Eyelid Speculum Device is usually metal and looks like the following...

And your eye looks like this after placement....

And no, it does NOT hurt to have it placed under the lids, nor is it painful as it is within the eye area. Cold. That's about it. But then you have the drops placed in and all is well.

One of my awesome pals from Twitter and Facebook (we initially "found" one another through a friend of a friend on Twitter) has recently had a corneal transplant done, due to having Keratoconus (cone shaping of the cornea). Brooklin (ItsBrooklin on Twitter) is also a professional photographer who does great work with picture-taking.

Earlier in the week, while on a shoot, Brooklin had a buddy take a picture of his eye where all of his stitches were in. For Brooklin's case, he had BOTH the Continuous, as well as the Interrupted suturing performed on his transplant eye.

First of all, THANK YOU Brooklin for letting me use your eye as a prime example of explanation for this post. You couldn't have timed posting the picture really any better. And also, dude... You have BEAUTIFUL brown eyes. They are like Amber Brown. My favorite shade of brown.

Well, I hope that this will put your mind at ease, as well as help you to better understand the process of having stitches both placed in, and removed from your eye once you have had a Corneal Transplant. It looks scary to go through. But really, it's not too bad. Personally to me, the worst part is honestly the speculum.

Rosacea....

2012-01-24T08:31:00.000-08:00

Need Support? Find Some on Twitter.

2012-01-22T08:58:00.000-08:00

After all was said and done, I felt very isolated and alone. I knew others had a corneal transplant, but I knew no one that has. It's a very humbling, sobering and lonely experience to go through.

Not many people that have had the procedure done, or are about to have it done, are very open, publicly that is, about having to need someone else's cornea attached to their eye. It is seemingly a taboo subject.

There are many times that the sight-saving operation is filled with myths, half-truths and misconceptions. And for those that have yet to go through it, that can be very damaging and make the person so frightened if they have not had someone speak up that HAS had a corneal transplant to tell them of the REAL experience.

I've been a longtime member of FaceBook. But then, I also added Twitter to my social networking. And it's been a God send. I have met some REALLY awesome people, from all over the globe. Special Needs parents, Stay-At-Home moms, and those that have or are planning on having a Corneal Transplant. As well as well-known sight-based organizations.

Finally, I was no longer alone. I was able to not only GET support post-op, but to GIVE support, too. Finally, someone understood the fear, the unknown future and I was able to ask questions and get some real answers.

If you are on Twitter and you wish to connect with those that have had a Corneal Transplant, or are getting one in the near future, or just wish to know more of what's involved, here is a listing of those you can "follow".

emmsieevans

LeChaika

ItsBrooklin

LionsVisionGift

KeratoconusGB

MichiganEyeBank

m0m23kidznKatz (ME!)

R.I.P. Sarah Burke

2012-01-20T10:56:00.000-08:00

Famed X-Games Half Pipe sports star, Sarah Burke has passed away from head injuries that she had sustained in a bad accident nine days ago, while practicing for an upcoming event.

Thanks to the Canadian X-Gamer, she has made a name for herself and her fellow female gamers in the sport of extreme ski and snowboarding. In 2014, the first-ever Half Pipe competition will be within the Winter Olympics. And Sarah Burke was to be there, representing her country, Canada for the Gold Medal.

She was a hero to those both male and female of the extreme sport, by making it possible to compete in the Winter Olympics. But she is also a hero in another way, too.

Per her wishes, Sarah's organs and tissues were donated. She wanted to help others to live a long life. And now, there are people that are going to do just that. Live longer, better and healthier.

Thank you, Sarah Burke, and her family! You all have given the chance of a lifetime to others. You all are TRUE heroes to those that were helped by your gift of love, life and compassion.

Dying Girl Denied A Transplant Based Completely On Mental Disability

2012-01-15T07:49:00.000-08:00

There is a little girl in desperate need of a new kidney. Her parents have already been in front of the Transplant Team's Board, only to be denied of her lifesaving surgery through Children's Hospital of Philadelphia.

The little girl is still in a stroller. She is only three years old. And severely mentally handicapped.

And that is what the Nephrology Department specialists and the Transplant Team are basing her denial of services on. Not on the fact that she has a severe case kidney failure or that the family is ready to be tested as viable matches.

Plus, the doctors had stated apparently, that they fear for the little child where anti-rejection medications are concerned. Mainly due to the fact that they COULD cause mental disability. Um... How much worse can this poor child get with already being as mentally handicapped as she is?!

To read the full story, from the parent's own words of what had happened, CLICK HERE.

I can (sadly) see BOTH sides of that proverbial fence. But on the flip side, to ONLY base the "need" on one specific area, primarily intellectual function is NOT something that I agree with.

As a Transplant Team, they MUST base it on a number of factors. Including not only viability and psychological areas, but on SO many other levels, including the severity of the problem with the kidneys its self.

They did make at least ONE valid point, regarding her age, as well as her need. At her age, and the rate of stability with the new kidney, she is going to need AT LEAST one more, if not two or more kidneys throughout her lifetime. And they will not always be available from family.

And without testing the family NOW, there is NO way of even knowing if ANYONE, including the parents are a match.

But to deny ANYONE, let alone a child of a lifesaving surgery, including a transplant based solely upon a person's mental disability is just complete and utter bullshit.

"I'm A Survivor".... My Cornea Donation PSA Video.

2012-01-08T09:07:00.000-08:00

Because of my own stupidity and having probably the world's biggest brain fart, I had to start a new YouTube account. To view it and (hopefully you will) subscribe GO HERE.

It had taken me most of one evening, and a majority of an afternoon to piece together a video that is just over four MINUTES in length. To say I put all of myself in to the project is well, a bit of an understatement. But, here is the finished product.

It's not as good as some people's videos/PSA's . But I think that I got the point across.

Corneal Itch relief.... A Video Tutorial.

2012-01-06T10:40:00.000-08:00

Let me first say I HATE my voice lol. And I am not looking my best at the moment, thanks to a stupid Rosacea breakout.

But as I had promised a few weeks ago to a few people, especially @BeaSereneInLife on Twitter, here is the quick tutorial of how to SAFELY relieve ocular itching without compromising your graft.

Well, I hope it helped a bit to know a few new and simple tricks. Let me know what you think of the video and the advice. And if you have ideas for future blog videos, then shoot them my way.

Thanks for watching.

The "Founder" of Sight Resorative Services.. A History Lesson

2012-01-04T13:34:00.000-08:00

Richard Townley Paton, M.D. was a man with a mission. A mission to retrieve and safely keep cornea tissue at the ready for doctors to use of their patients in need of the Gift of Sight.

In 1944, Dr. Paton had founded the Eye Bank for Sight Restoration in Manhattan, New York, along with his partner, Dr. John McLean of New York Hospital. A place that would help with harvesting, testing, readying, and transporting viable corneas to doctors and the patients in need of help in regaining their sight through corneal transplantation.

Dr. Paton also did some of the earlier works of helping to perfect the surgical procedure, before Founding the wonderful and now American-wide acclaimed, eye bank.

Some of his corneal donations came from those within the prison settings of convicts whom had consented to the donation of their eyes after their death by execution in Ossining, NY.

The Eye Bank, which is on East 64th Street, was the first organ/tissue banking system to accept eye donations. And it was a joint-effort institution between a total of twenty-one New York hospitals.

From that point on, more eye-collective banks were beginning to open throughout the country. Slowly but surely, more banks opened, and more people had their sight saved, and their lives more enriched due to the thanks and ingenuity of two men who forged a path to a positive means to restore sight to those that otherwise had little to zero chance of ever seeing again.

Medical advances of today in the world and works of sight restoration have made them to be THE most successful transplant of all transplants done in the United States and around the world.

At the age of eighty-two, on February 27th, 1984, Dr. Paton sadly passed away. But not before completing his mission of giving the Gift of Sight to as many people as he could. Thanks to him, myself and MILLIONS of people around the world are seeing things that most of us take for granted.

(initially posted to YouTube on April 27, 2011)

Another Christmas Done. Another Year of Emotions.

2011-12-26T07:51:00.000-08:00

..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?

Emotional Times... Tissues Have Them, Too.

2011-12-11T08:11:00.000-08:00

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.

Video Testimonials (via YouTube) re: Corneal Transplant Patients/Donor Families

2011-12-10T08:55:00.000-08:00

Cataracts

2011-12-08T11:28:00.000-08:00

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

Wrong!

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.

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

2011-12-07T08:00:00.001-08:00

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.