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

Posts tagged ‘life’

“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.

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.

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…

“Normal”, I have arrived! *Update post!*… With great news.

Cornea transplant rejection has been reversed. NO needle injection to place medication in to the eye (thank God!). Down to four times a day on my steroid drops. Adding another drop once a day, starting next week.

I won’t go for another recheck for another four weeks.

Also, I was told that I am now on my Doxycycline pills for the rest of my life…. But the BIGGEST news of the whole day?

I can NOW WEAR MAKEUP again, after almost three YEARS of not being allowed to do so by the doctor’s orders. And that eye, even with a cataract and a small, partial flat area of cornea, is now seeing 20/20… He said that it is RARE for those like me that have had such a tight and flattened cornea sewn in that way, and especially with all the problems it has had in the past.

Now to teach my oldest child, my daughter, who is twelve (going on 25, haha!!), “Makeup Facts 101” where Mom is concerned. Which means NO SHARING of *anything*. As in NO TAKING MAKEUP FROM MOM. Ever. Or the application brushes/sponges.

With my condition(s), I cannot afford, nor do I want to chance cross-contamination. It can hurt the cornea graft. If not even make it so infected, it rejects.

Plus, I will have to get the tad-bit “pricier” makeups. Especially eyeshadow. Allergen-free (Almay) and in the Mineral Makeup type (light weight, less ‘crap’ ingredients).

NO eyeliner or mascara. Fine by me. At least I can have some color on my lids now.

It’s really funny how the tiniest of things can seemingly add up to be the biggest thing in your life. Especially when it was taken for granted, and you were banished from it for so long, wishing you could have it back.

Over the last two and a half years, I have gone out so many times on “dates” with my husband, and SO badly just wanted to “pretty up” and hide the red splotches when my Rosacea flares up (and zits that come with it at times). I don’t wear it a lot. Only during special occasions and “date” outings.

It has been my LAST goal to reach to get back to “normal” since my transplant. And now, it FINALLY has arrived and I can say that it’s ALL over (for the most part) and my life can be completely as it once was, only with a few minor tweaks and adjustments.

Normal Life, it’s nice to have you back and nice to know that we can once again live in harmony. Because, Normal Life, you have been away for WAY too long.

And thank you to my Donor, for they are my PERFECT match. We have been through a lot together. In a “spiritual” way of course. But physically as well. Because without them and their gift, this day of COMPLETE “normalcy” would never have been possible.