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 ‘life’ Category

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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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.

Emotional Times… Tissues Have Them, Too.

When everything had happened and my cornea perforated, thanks to my own stupidity in the end of it all (knuckle slipped from my brow and BAM!), all I felt was fear and anxiety.

I didn’t know what was going to happen next. Was surgery going to be needed? Will I have an eyeball? What happened next?… Those questions haunted me daily all the way up through my transplant surgery.

Then, the anger started. I was mad at myself. I played the “should haves” and the “what ifs”. And they all were aimed at myself. If only I had gotten the skin condition treated sooner. If only I had gone to a better doctor in the first place over the reoccurring eye infections.

There were SO many things I should have, and could have, done different. Then maybe, I would not be where I ended up.

After the surgery, and about a month of recuperation, I started having bouts of depression. It was nearing Thanksgiving (my surgery was 2 days before Halloween and is an entirely different entry altogether) and I had to go in to see my Corneal Specialist for a check-up.

Out of the blue, I started to bawl. I cried so bad, I think that the poor guy was scared I’d pop a stitch and raise my optic pressure through the roof.

Finally, I had blurted it out… Something I had kept silent until that point. I felt guilty. Like I had stolen something. Like because of MY carelessness, someone else had to “pay” to let me make it all right.

I was suffering from Survivor’s Guilt. And a nasty case of it, too.

When my first (and only to date) bout of rejection came in January of 2010, I felt that anger boil up inside of me all over again. I was doing EVERYTHING right. My drops, my pills, my shield. No bending or lifting. Still though, I was rejecting.

I was scared to lose this precious gift. And I was scared that I was letting my donor and their family down.

These days, two years and almost two months later, when things (like the popped stitch that infected and abscessed) go wrong, I get scared. And yes, I get angry. Again. But only at myself and my eye.

I AM SCARED all of the time, but try to keep it in the back of my mind, within the deepest depths. I could reject today. Or tomorrow. Maybe not for another 20 years. Or (hope to God) never. But the POSSIBILITY is always there.

Most people that have never had to go through this type of transplant just view it as “just an operation” and “just eye tissue” that happens to be the “most transplanted thing on the body” with the “most success rate”.

But it does NOT mean that we are any less vulnerable to our emotions as TRANSPLANT Recipients. It does NOT mean that we are ANY less grateful or appreciative, or mindful of our gift, or of our Donor and their family.

A friend of mine over on FaceBook, that I had met through a Transplant group and has had a Liver Transplant had brought up something that I have never thought of. But after “listening” (AKA reading) about it, it made complete sense.

We all (from corneas to hearts, to lungs to skin grafts) suffer quite possibly from some form/amount of PTSD (Post Traumatic Stress Disorder)… What we went through BEFORE our transplants, going through the transplants knowing that (for most of us) someone had to DIE in order to help us live, and the side effects from post-surgery.

That all combined really takes a toll on the Recipient. Emotionally, mentally and physically. Transplants, even in the most simplest of forms, can honestly take their toll on the patient. And in turn, on their family and caregivers (another post for a later time).

So, know my fellow Corneal Graft brothers and sisters, you are NOT alone in your thoughts and feelings. We are not weak. We are strong. And what WE went through is just as much of a “big deal” as those that get a heart, a liver or a lung. Our sight was saved. And our lives were made better.

Because our Donors and their families gave the ultimate gift one can ever receive. The Gift of Sight, and of a better life.