The life of an ordinary woman, who'd been given an extraordinary gift. The Gift of Sight. This is my story and my life.

Archive for the ‘support’ Category

Happy Mother’s Day & Thank You

It’s days like today that are harder on me than most. Not just because of my own mother not being with us anymore. But because there are so many questions and variables as to who my Donor was. And it makes it that much harder on me to know that I live in a world of “unknown”.

So, to be on the safe side, being that I’m one that likes to err on the side of caution, I must say…

THANK YOU!

And Happy Mother’s Day to my Donor. I don’t know if you indeed were a Mom. I don’t even know if you were female. But it makes me feel better to say it rather than not.

I can only imagine what you family is feeling and thinking. Especially if there are children that you had to leave behind. I know from my own experience, it’s hard, even all of these years later to not have Mom here to celebrate with me. In time though, I promise, it does get easier for them. Only, the sting will never be completely lost on them. But you are with them, as you are with me, though on two different levels.

Today, and everyday as before and will be in the future, I thank you for your gift. The gift of sight. The gift to enjoy my children and love them as I’m certain you had yours. For that, I am eternally grateful to you, and to your family.

So today, on this Mother’s Day, I shall enjoy my children, even though they have been driving me a bit batty. Because of you, I can enjoy them and watch them with both of my eyes. Thank you.

And Happy Mother’s Day.

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FaceBook & Donate Life… What A Team!

So, if you are living under a rock, then you don’t know. But if you are among the above-ground walkers, then you most certainly have heard it through Good Morning America, read it on an internet news site or within your newspaper.

Donate Life and FaceBook are teaming up to bring awareness to the need for people to sign up for Organ Donation.

Mark Zuckerberg has set up your timeline to add in your “Life Events” about becoming an Organ Donor, and to explain why you made the decision to do so. In mine, I already had taken the step of placing in it that I am a Corneal Transplant Recipient, posted the date I had received my Gift of Sight, and why I was in need of a new cornea. So, Mark… um, where’s my royalties for giving you this idea (*smug grin*)?

To learn more about this new addition to the timeline, and more as to why the Co-Founder of the largest Social Networking site in the world on the web had added this, CLICK HERE to read the GMA article.

FINALLY!! Something positive, good, and actually “worthy” of being on a Social Networking site, such as FaceBook has arrived. And with this, I am hoping even more so that “20 Million in 2012” won’t only be a slogan and a dream, but become a reality and even push past that goal’s number. Especially with about 113,000 Americans in dire need of organs and tissues. Not to mention the hundreds of thousands more worldwide.

If more people were to take the time to learn of the REAL facts regarding Donation, to listen to those of us that have received an organ, tissue or even skin or other transplant-able parts, and how our lives and quality of our lives are changed, saved and improved, then imagine the possibility of not needing such long waiting lists, so many people DYING as they await their miracles, or losing limbs or eyes due to awaiting for a match to come along.

If you are not signed up as an Organ Donor, please do so. It costs you nothing. It costs your family nothing. But it gives us recipients all the riches in the world with nothing (other than our children and grandchildren) in comparison. And your gift is truly a “gift that keeps on giving” long after you are gone, and you will live on in others. Get educated on the facts, sign up at Donate Life (link above), and then tell your family, your friends, and even your place of worship that you signed up to be a Hero of Hope.

Am I crazy, stupid, or dare I say it… BOTH?!

As my readers know well by now, I am a recipient of a cornea. And I have been an organ donor since the age of 18. And I am a strong supporter and activist for organ, eye and tissue donation.

And I am about to put myself through something I have not done in over two decades. A run/walk course. A three mile one at that. And this course is all-cement terrain, with two decently steep hills to climb.

Back in the day, I used to run/walk the Examiner Bay To Breaker race. Each year, my time got less and less. But also did my knee’s ability to hit the ground… running. And over the years, the one lung that I have had lifelong problems with, as well as scar tissue under the scar where my trache once used to be, has slowly gotten a bit more medically worse.

Add in the eye, and it’s been one hell of a ride on this thing called “Life”. But you know what? I have loved (mostly) every freaking minute of it! And I have thus far beaten every conceivable odd that was thrust at me. I have done EVERYTHING that doctors have said I’d never do. Even with adding in the fact that I (am at last checkup) at a range of 20/20 vision in an eye that’s been through infection, puncturing, loss of fluid, and now a cataract under my transplant. Miraculous, to say the least. Then again, I’m guessing that I have a right to be a bit biased.

Now, I am going to TRY and defy my own personal limitation. I am taking back to the race course. And for a good cause. And I plan on walking as well as TRY and run (portions of) the course set before us.

On Saturday, April 7th, 2012, my oldest daughter and I are participating in the Point of Honor 5K in Lynchburg, Virginia. The proceeds generated (via registration fees and donations) will go to the Virginia chapter of Donate Life America and to the Virginia chapter of LifeNet. And also other organizations throughout my state to help educate, sign up and bring awareness to organ, eye and tissue donation.

My parents, especially my mom, did everything they could to ensure I lived through what was at the time in 1976, the unsurvivable. No matter what it took. And that carried on after her death.

Now, I am doing everything I can to get my special needs son what he needs, no matter what it takes.

And I am fighting for THOUSANDS of strangers on waiting lists, knowing that MILLIONS more will be on those lists in my lifetime.

I’m fighting to bring awareness to Organ Donation, the need for Heroes to give Hope to people that are in need of the Gift of Life/Sight.

For that, I am willing to put my body through two steep hill climbs and another two and a half miles of walking/running.

If it makes even just ONE person observing the race who has yet to do so, sign up to be a Donor, then it was worth ever sore muscle, achy feet and being out of breath and all the sweat that will be pouring down my face on Saturday morning.

But I must make a confession. It’s hard doing this again. But not physically. Emotionally.

I lost my mom on October 29th, 1989. Exactly twenty years later on October 29th, 2009, I received the Gift of Sight from my beautiful Donor. And to me, it was no coincidence of that happening in the way that it had. I believe my Mom was with me through all of it. Heck, maybe they both watched over me that day as the damaged eye was being repaired. Because they (as was I) were almost 100% certain that the tissue wasn’t going to take, and that when I was wheeled out of surgery, it was without one of my eyes.

So, Saturday, I’m going to walk (and run) for my Donor. I’ll walk for my precious Donor Family. I’ll be walking for Mom. And I’m walking for those waiting patiently for their second chance to see, walk and live.

Wish me luck. Crazy, stupid, or even both, I’m so very glad to be participating in such a wonderful cause, and having fun as I help bring Hope and awareness.

April is… (20 Million in 2012)

It’s that time of year again. That time to get people to register. To learn the REAL facts of donation.

To be one of the twenty million in 2012!

I am. Are you?

I have been a Registered Organ Donor since I turned 18. And in checking that box, I never once had a second thought in doing so.

Today, not only am I a Donor (when the time comes), but I am also a Recipient. Which in and of its self makes my signing up all those years ago even more meaningful. To me, to my family, and to whomever I will help in the future.

Not that I am hoping to die tomorrow, mind you. But I know that when it’s my time, that I in some way or ways, will live on in those that I was able to help save, or at the very least, improve their quality of life.

If it weren’t for my Hero Donor, more than likely, I wouldn’t have an eyeball in my left eye socket today. They not only saved my cornea (the window to the eye that protects the eye from outside harm and maintains a balance of eye fluid), but my entire eye. It was ravaged by a severe infection due to Ocular Rosacea, and it had a perforation (hole), and was leaking eye fluid. I lost 75% of my cornea and about 90% of my eye fluid. To say I was on “borrowed time” is quite possibly an understatement. And I knew (by admission of the Surgeon) that very likely, my eye was going to be removed. Especially if the cornea was showing signs of sudden rejection then and there while I was on the table.

My Cornea was flown in to where I had my surgery, which was performed by Dr. Alan Carlson over at Duke University Medical Center. My Donor had passed away hours before, and was thankfully a Donor, and a match for my needs. And every single day that I look in the mirror, watch my kids play and excel, see the birds and the squirrels in my backyard and do even the most mundane, everyday tasks, I am grateful and thankful. To a stranger that I will never get the pleasure and honor of meeting. And I’m grateful to their family, as well. I can only hope that one day, I can meet those that knew my Donor best and get to learn a bit about the person that gave me my life and it’s quality back. And to thank them for helping to give my children back their mother. Because NO CHILD should have to endure what my three children have had to witness and feel so helpless as to seeing the suffering of a parent in that way.

If you are NOT a Registered Donor of your organs, eyes or tissues, PLEASE, become one today! And yes, you can be specific if you choose to do so, of what you will allow to be donated. It’s a simple process. You can go to your local DMV (Dept. of Motor Vehicles), to Donate Life America, or to LifeNet.  Within those websites, you can learn the TRUE facts about Organ, Eye and Tissue Donation. Once you have read up on the process and have decided that you wish to be one of the TWENTY MILLION IN 2012, then please take a moment and join us. It’s easy, quick and it will help save lives!

Our souls go to Heaven. Not our organs. So please, share them with those that can’t live without them.

Rules Need To Change When It Comes To Getting A Transplant

I don’t care what type of transplant you need. Be it a heart, lungs, liver or even a cornea or tendon. Or any other type of transplant that requires “parts” from another person, living or deceased. We as Recipients have an obligation. To our Donor, their family, and to our fellow man.

To pay it forward.

But, because some people have passed along misguided information, and have made ill assumptions regarding the process of Procurement (“harvesting”, which is no longer a term used within the Transplant Community, of a person’s organs, tissues and eyes), and have instilled fear in those that have not one shred of understanding or experience with the processes of Transplantation, articles, like the one that I will provide a link for down below make getting Donor Registration to increase almost impossible.

It’s best to get it from the horse’s mouth, than from some jerk that has not one ideal notion of what Organ/Tissue/Eye Donation is truly all about, and what all is involved. From procurement to actual transplantation.

A friend of mine that I sometimes converse with, Olan B. (last name omitted to protect his privacy) had posted a link to an article from all places, Wall Street Journal. And what I had read within the piece made me angry, hurt and even a tad bit ill. Why? Because the article was wrought with lies, misconceptions and half-truths regarding Donation and what happens (according to it’s author, DICK TERESI).

Here is the link to the article in question… Please read it for yourself, and then feel free to chime in within my blog post’s COMMENTS section. What You Lose When You Sign That Donor Card

Are you angry? Upset? Do you have your blood pressure shooting up? Mine did too, and I was pretty livid myself.

And it’s because of people like Mr. Teresi, that those awaiting a solid organ, tissue or for a cornea, that people are dying, losing their entire eye or their sight (permanently), lose the ability to walk, or not have a good skin graft to help recover from burns, see such a harsh number of Donor Registry/Registration shortages. Because of the fear and the misconceptions about being a Donor.

Thanks to this man, within the comments, I have noted that there are some who have been registered to be a Donor for several years, only to retract and have their Donor heart removed from their state’s ID or Driver’s License because someone “finally had given them the ‘real’ facts of what happens to us if we donate”. Which in turn, brings the Registered Donor rate down. Then that in turn KILLS more people DAILY that are awaiting a new solid organ, or makes someone lose their SIGHT for good.

If that’s how people feel, then I say that the rules to become a RECIPIENT must change. Here’s MY idea…

I for one do NOT believe in forced registration across the board in regards to “Opt-Out” systems. In other words, you are automatically a registered Donor, who must go in to the DMV or online and check the box to OPT-OUT of being a Donor.

But, I feel that if you can TAKE from another person, no matter what it is that is donated to you, then you sure as hell can GIVE BACK! In other words, if you are NOT a donor, then if the time comes for the need of an organ or tissue, then you MUST sign up to become a Donor yourself, as part of your becoming a Recipient.

If you are ALREADY registered to be a Donor when your time comes to need a solid organ or a tissue, then you have NOTHING to worry about. But you will HAVE TO REMAIN A DONOR.

To get the REAL facts regarding Organ/Tissue/Eye Transplantation, please visit Donate Life America, or visit LifeNet. They have the real information. As does the Eye Bank Association of America.

Because of misconceptions and mis-education, stories like the following would NOT be possible…

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March is…

…more than just about Saint Patrick’s Day, wearing your green shirt and a Leprechaun hat. It means SO much more to MILLIONS of us, world-wide.

Because, March is National Eye Donor Month in the United State. It is a time to let our donors, known or (in my case) unknown to shine. And to bring awareness to the need for those that are willing to give the Gift of Sight when it’s their time.

Plus, even though Corneal Transplantation is the most performed transplant surgery, globally, and has the highest success rate above ALL other transplants that are performed annually, it is also the LEAST talked about procedure.

As simple as it sounds, undergoing a Corneal Transplant, also known as a Keratoplasty, is NOT a walk in the proverbial park to undergo this kind of surgery. Especially the post-op for months, and yes, even YEARS later. But even then, for us, it is honestly a small price to pay in return for the gift that was bestowed upon us.

Some of us had to have a transplant due to having a coning of our cornea. Some of us had our cornea eaten away from infection. Some also had a perforation due to a traumatic injury. There are several reasons behind needing a Donor’s cornea to replace the one that we were born with.

But no matter the reason behind the need, it is a surgery that none of us will soon, if ever forget.

In the USA, there are states, including where mine was performed, which was North Carolina, that you are not allowed by state law, to know ANYTHING regarding your donor. Not event their gender. In other states, it’s very limited on what information is allowed. And in some, depending on the donor family and the recipient, who in ANY of these cases, must go through the appropriate “channels”, there is an allotment of mostly-full disclosure right off of the bat. It all depends from state to state.

I myself have written to my Donor’s family. I have seriously thought of doing it just once more. Kind of do a little update and wish them well. Nothing too fancy. I never received a reply back the first time, so I certainly am not going to expect one this time, either. And I’m okay with this.

Over in the UK, their Donor Registration is pretty low. For ALL forms of transplantation. As is the case in Australia. Sri Lanka is now the TOP Eye Donor Bank in the world, thanks to most everyone there being an eye donor. They even ship donor eyes to other countries (primarily third world) due to having such an abundance of eye donations.

If only we, the USA could be like this. And not just with our eyes. But with our lungs, hearts, livers and other areas of the body. Can you imagine how many lives we could save? How many people could regain their sight? And how many lives would be enhanced and their quality of live being one of worth living.

And the most wonderful thing about eye/cornea donation? Most (as in about 98%) people from ALL walks of life can become an eye donor! There are very, very few restrictions to be disqualified as an Eye/Cornea Donor. And of course, only the surgeon that is performing the removal of the organs and eyes can indeed make that decision at the time.

The eyes are the most available. But only if you become a Registered Donor with your local chapter of Donate Life America , LifeNet, or an Organ/Eye/Tissue Donation organization near you in your country (if outside of the USA). And of course, let your family and your close friends know of your wishes, so it won’t be too hard on them. And if you become a Hero, be sure to also have it stated in your medical and hospital records, as well.

YOU are the difference. And it is true what they say, in my mind, that the eyes are the windows to the soul. And my soul, along with my heart, made room for another person that I will NEVER meet in this lifetime, but who is with me always. Not only as a physical part of me, but as a piece of my heart as well. My Donor still sees. Through me. And I can see again because they gave the ultimate gift of love. A love to humanity and the will to fight and to live.

This is what Eye Donation, and all other Donations are about. Love. For others, more so than for yourself. To want to help the helpless. To save others.

Please, become an Eye Donor today. Register at Donate Life, LifeNet or at your local DMV office. It’s quick, easy and free. And it’s one of the greatest things you will ever do with your life.

 

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Have A Heart For Donation!

I was considered a “fast healer” . For having such damage and low chance of the graft taking, let alone surviving was deemed by all the medical professionals within my case as a “miracle”. And it indeed WAS a miracle. I could be writing this and only able to see it through one eyeball. Because I would have only had one eye left in my head.

But for me, that fast healing came with a small price (nerve damage, dry eye and infection). But for every stitch removed, I was reminded just how far I still had to go and not to rush getting there. Still today I don’t think too far ahead, because tomorrow could be another problem with it. So I take each day that my gift lasts as an extra day to see again and know that it is always one small step away back to square one, again.

Because it IS a gift. My donor, and/or their family had thought of others and let pieces of themselves live on in others.

These next three months (February, March and April) are going to be busy months for me. Because each of these months, I’ll be promoting Organ/Tissue/Eye Donation in one way or another. For February, I am doing THIS post. For March, it’s going to be another post about Eye Donation Awareness Month (which is in March). Then for the “big one”. April is Donate Life America Month.

So, if you have NOT done so yet, no matter where in the world that you may be, please SIGN UP TO SAVE LIVES. Have a heart for Organ/Tissue/Eye Donation and be someone’s Hero and give the Gift of Sight and/or the Gift of Life when your time comes.