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 ‘medical condition’ Category

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.

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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.

 

“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.

Rosacea….

Dying Girl Denied A Transplant Based Completely On Mental Disability

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.

Corneal Itch relief…. A Video Tutorial.

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.

Cataracts

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.