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 ‘organ donation’ Category

“Eye” See The Future

Really, I certainly do! No joke. Because where I’m going, everyone (so to speak, metaphorically) “knows” me, but I don’t know most of them. And this will be a trip to remember, I’m sure, in more ways than one.

In July, I’m taking the Amtrak Train with my three kids (alone) across the country from Virginia to Nevada. That’s a three day ride. My husband is flying out on the third day of our train trip and will be pulling in about eight hours after us coming in via the train.

It’s not the trip out that has me kind of already banging my head on a wall. Or the fact that I know for certain that every security person in ALL the casinos I may roam in to will be requesting my ID and asking if I am over 21. Blame that on my Dad’s genes of holding on to youth for way longer than seems conceptually possible.

It is the fact that everyone that knows Dad, knows me, and in turn knows about my having a transplant. And in affect, I will very likely be stared at, asked questions (even of the obscenely stupid kind), and will be having conversation after conversation of how it feels to have “someone else’s eyeball” (insert the eye-roll here).

No, I don’t mind my father updating friends that I know of in the complex. They too are kind of like an extension of his family and of mine. But gee! I’ll be getting “I have heard A LOT about you” from people at his bank, at the grocery stores that he frequents and whatnot. Makes me a bit jittery just thinking about how many strangers “know” me and of my life.

I’m going across the country to “get away from it all” on vacation. To see friends. To see my Dad and let him have time with his grandchildren. To meet up and reunite with cousins I haven’t seen in over twenty years. To take my kids and husband to see all the sights like Lake Tahoe and Virginia City. To have fun.

But I don’t want to have to re-explain myself and feel like a broken record. Especially to the lady at the teller area of the Bank, or the guy behind the store’s Customer Service Counter. Or even to my father’s doctors (if I happen to go to appointments with him while there). I’m there for enjoyment, not to give a live presentation of my biopic.

Yes, I went through a lot. It was a major ordeal. But it’s over with, and I deal with setbacks as they come, then move on. I don’t want to be placed back to square one with my operation when I go home. It’s one thing for me to explain things or answer questions in regards to close friends and my family. But I wish to not deal with strangers. Not when I’m aiming for a good time, filled with basically being left alone about my new “eyeball”. But going home means facing all of this quite potentially. Because my Dad tells his friends (not just in the neighborhood) at the store, and a few at his banking institution about what happenings are going on with me and the kids. And of course, being the proud Grandpa that he is, he shows the latest pictures he gets (as I can get them to him) to everyone he knows. That’s cool. But I’ll be honest. I’m tired of having my entire life laid out to all of Carson City, Minden and Gardnerville.

Does this make me out to be a bitch? Maybe. Am I getting too “closed off” when it comes to my Dad telling about my life, seeing as I DO blog about many things concerning me, my life and even my family? Maybe. Am I over-analyzing? I bet that’s a yes, but with good reason, I feel. But I think for me, it’s a humongous difference in MY telling of MY life and of MY story, than having my father telling every Tom, Deloris and Jim about my life and of my medical issues as they arise.

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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.

Mixed Feelings

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.

R.I.P. Sarah Burke

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.