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 ‘transplant’ 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.

We Ran To Save Lives!

The morning could not have been more perfect this past Saturday. A tad chilly, but not so much so, that it was horrible to have to stand it. Believe me, it wasn’t long before I removed my light jacket and tied it around my waist from overheating.

The last two days, I have been pretty sore. But that’s because I didn’t have time to train and build myself up for the race and that long three mile course.

In the end, every ache and pain, every muscle strain, and every Advil popped (or muscle relaxant rubbed in) was well worth it.

Because my oldest daughter, who’s twelve, and I helped promote a wonderful thing. Organ/Tissue/Eye Donation. And all of the proceeds pulled in from registration, and from private donations went to Donate Life (Virginia chapter), to LifeNet, and to other programs that educate and bring awareness to the need for Organ Donors. And also some is set aside to help aid financially, the patients that have little to no health insurance to help pay some of their transplant surgery bill.

When all was said and done, my daughter came in at 276 out of 330 runners. She clocked in at just under forty minutes. As for the old lady (me!) I came in at 321 of 330 runners, with a clocked time of just under fifty-one minutes. I haven’t done something like this in over twenty years, so getting in within under an hour, for me was a HUGE feat. Especially when you consider, I have a lung that barely works, thanks to birth defects, and the left lung carries most of the work of two.

Now, it is looking like NEXT April, it’s not just going to be myself and my daughter. But also my husband and our son. My youngest will have to be watched by someone and then me or Dad will take her for a Youth Mini-Mile run that they place for the kids ages one through like 12.

As I got to the turnaround/halfway point, I admit it, I cried. But not because I was hurting. It was because I was half way through accomplishing my goals. Of honoring my mom, my Donor and their family. And I was secretly wishing my Mom was still here to see it all.

Then I cried as I was nearing the finish line. Because I caught a glimpse of the time clock and noticed I came in UNDER my personally-appointed time limit. And because I pushed against EVERY limitation I was given (to my parents) as a baby and a young kid. I pushed through feeling like my lung was about to drop to my stomach on that last part of the home stretch. I accomplished what I said I would. And that was to see the whole course through. And I did just that.

Here’s pictures from the race that a photographer had taken throughout the entire run. Thanks to him, I was able to see really how my daughter had done.

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.

I’m Keeping An Eye Out! (Pictures)

To mark the upcoming date of two years and five months post-transplant, I decided it was time (and very long overdue) to give a few pictures of how my eye (and overall skin problem) is doing.

Thankfully, at this time (as of posting) my eye is looking good and my skin has actually cleared up a bit more since the shots below were taken (a week or so ago, but no more than 2 weeks ago).

All of my stitches are gone. And I will always have a “mark” near the top of the area of where my hazel color is. It also runs in to the sclera a bit (white part of the eye). The blood vessels are less now then they were at the time of taking the photos, also.

 

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.