Emily M. DeArdo

writer

organ donation

Thirteen

CF, family, essays, organ donation, transplantEmily DeArdoComment

The annual transplant anniversary post tends to change, in form and shape, every year. This year, a lot has happened: 

Catholic 101 was published in November (buy it here--on sale until Friday!) 

My brother got married

(c) Erica Kay Photography , http://ericakayphotography.com/home

(c) Erica Kay Photography , http://ericakayphotography.com/home

 

My sister got engaged

Melanie and Jason (her fiance) leaving Bryan and Sarah's wedding (c) Erica Kay Photography, http://ericakayphotography.com/home

Melanie and Jason (her fiance) leaving Bryan and Sarah's wedding (c) Erica Kay Photography, http://ericakayphotography.com/home

I saw the Stanley Cup with my parents

I went back to Williamsburg and Duck 

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I started writing and editing for Take Up & Read. 

I celebrated my grandma's 88th birthday with my family

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I knit my first shawl. 

 

None of these things would've happened without my donor. 

It can be tempting to look at life in terms of productivity, what we do,  and I'm not trying to list my productivity. Look at what I've done! Rather, it's more like, these are things I never would've done, enjoyed, even conceived of, thirteen years ago. These are things that never would've happened. 

I would've missed my brother's wedding. 

I never would've met my new future brother-in-law and sister-in-law. 

13 birthdays, Christmases, holidays....all those things would've passed without me. 

In general, women post-transplant don't do as well as men. There isn't a lot of data, period, on women who have survived a transplant longer than 10 years. I'm in new territory here. 

I try not to think about that. 

Instead, these things I get to do are gifts, even when life is sort of sucky, because life is never totally perfect. I mean, things are overcome, yes--but just because something is overcome doesn't mean that everything is suddenly perfect. It doesn't work that way. 

Someone said, life is full of suffering, but it is also full of the overcoming of it. 

And that about sums it up. 

Thirteen years of overcoming is pretty good. 

With the cousins on my mom's side at my brother's wedding. This is not all of them, btw! 

With the cousins on my mom's side at my brother's wedding. This is not all of them, btw! 

To be an organ donor, go to donatelife.net/register

Save Lives--Be an Organ and Tissue Donor!

organ donation, transplantEmily DeArdoComment
donation.jpeg

So, just about all of you here know that I am alive because of a double-lung transplant.  Obviously, organ transplantation is something I feel very strongly about. 

Today is National Blue and Green Day, a day within Donate Life Month (which April is) where we really focus on bringing awareness and attention to the need for organ donors. And there is great, great need. 

There are 115,000 people currently on the waiting list for an organ or tissue transplant. When I was listed in 2005, that number was in the high 90Ks. In 13 years, it has ballooned. To give you a visual: 

the Shoe .jpg

This is "The Shoe"--Ohio Stadium at OSU. It holds about 104,000 people. 

The national registry has about 10,000 more people on it than are seen in this photo. 

Imagine that for a second. 

That's more than the entire town of Burbank, CA; Cambridge, Mass.; or Charleston, SC. 

Now--of these people, twenty-two of them die every day, waiting for a donor that never comes. 

Imagine those people are your parents; your siblings; your cousins or aunts or uncles or grandparents. Your best friend. Your pastor or favorite teacher. 

And we can do something about that: by getting more people to be organ donors. 

Being a donor is totally free. It costs nothing to you or your family. It's very easy to sign up. 

You can do it here!

I'm alive because a woman named Suzanne decided to donate her organs. She helped me and at least two other people. She saved my life. 

Please register, so you can save someone else's life. 

 

Let's Clarify a Few Things

organ donationEmily DeArdo1 Comment

In reading one of my favorite blogs this morning, there was a post on how brain death isn't "death", and thus, how organ donation is basically people killing other people for parts.  The blog post linked to an "article" (which is really a charitable term for what it was), where the comment box was full of uneducated, conspiracy-theorist things about organ donation and how it's all a government plot to help SKYNET! Oh, and only rich people get organs because they bribe doctors. 

Also, transplants are "glamorous."

Yes. They so are. Let me tell you how glamorous it is to be cut in half and not able to take a real bath for a month. Let me tell you how glamorous it was for me to almost lose my right arm due to IV infiltrate. Let me tell you how glamorous it is to walk up and down hallways and have X-rays at 6 AM and to be in so much pain that just sitting up is difficult. Yes, that sounds super glamorous!

And it was so glamorous for my doctors and nurses and the rest of the staff, too. Because nothing says glamor like a twelve-hour surgery for my surgeon, where he's doing NOTHING but surgery. And it's also super glamorous to stay at a hospital for days on end making sure your patient doesn't die, and not be able to go home until you're certain she's stable. That is also super glamorous. 

And of course my family and I are just loaded. We live in Downton Abbey, didn't you know that? We have a private jet and everything. My parents don't have two other kids, or bills, or a mortgage. Nah. We're just dripping in extra money that we can use to bribe hospitals in two states to kill people so I can grab their organs. Yup. That's how it goes over here. 

(If you're sarcasm-impaired: the above is all sarcasm.)

Can we be real, please? If it really worked the way these people thought it worked, then 21 people wouldn't die every day waiting for organs that don't come. 130,000+ people wouldn't be on the transplant waiting list. Every hospital would do them, instead of only the relative handful that do. And everyone who needed one would get one, regardless of whether or not they're a good transplant candidate. 

Money, power, position....none of those things have anything to do with organ donation. Sorry. I hate to burst the conspiracy theorist's bubble. 

And also--guys. Brain death isn't some magical thing that we cooked up as part of a big racket. Again, see stats above. People aren't prowling hospitals looking for people to kill off for their organs. If that happened, people would lose their jobs. Centers would shut down. There would be an enormous public outcry and no one, understandably, would be an organ donor! 

All major religions support organ donation. St. Pope John Paul II and Pope Emeritus Benedict XVI supported/support organ donation. The Catechism of the Catholic Church says it's "Meritorious." 

You want to see how glamorous it is? How awful the surgeons and hospitals are? OK. Here you go. 



Organ Donation and Catholicism

Catholicism, organ donationEmily DeArdoComment

Just a quick blurb here, guys: 

Some people have it in their minds that the Catholic Church does not support organ donation. It does. 

Just to clarify: the church supports organ donation. Pope Emeritus Benedict XVI was/is an organ donor (I'm not sure if he still is, but age doesn't matter for organ donors--as long as the organs are good, they're good!). 

The people who think this seem to be from a super-traditional sect of the church, and they think that only living organ ovations are OK. That's not what the church says, and that's not how most organ donations occur. You can't give someone part of a heart. My organ donor had to give me both lungs--and obviously, she had to be dead for that to happen! (This isn't true for all lung transplant, by the way--some are possible with living donors. They're called living lobar transplants, but that's another kettle of fish.) 

As long as the donor has expressed the desire to donate organs (as in, be a registered organ donor, people!), or the family OKs it, organ donation is perfectly kosher. You cannot kill people for their organs, and that's not what happens in the United States or European countries. Some countries, yes, this happens, and that's not ethical. But that doesn't happen here. Doctors take care of you and give you the best care, whether or not you're an organ donor.

All major religions support organ donation as a selfless and charitable act of love for another person. 

So if you ever hear someone say the church doesn't support organ donation, whoever is saying that is incorrect. 

Starting the Ten Year Party

organ donationEmily DeArdo1 Comment

So far, the "official" markings of my 10 year transplant anniversary have been good. My tests all came back beautifully from clinic, so that's excellent news. We test not just the lungs, but all my vitamin levels, kidney function, bone density, and things like that, to make sure that the meds aren't causing problems in other areas of my body, and I'm glad to report that they are not. So that's fantastic. Yesterday, I went to Lifeline of Ohio's monthly staff meeting to talk briefly about my transplant experience. Lifeline of Ohio is my local organ procurement agency, and they're the people that do the "grunt" work, so to speak, of organ donation, for my area of Ohio. They promote and coordinate the donation of organs, and I've done a lot of volunteering with them since my transplant. Normally, I connect with the communications and education people, who organize talks and volunteer opportunities, but the meeting was for everyone who works for lifeline--about 60+ people, and includes nurses and medical staff and a host of people in other areas.

I didn't talk long--about five minutes or so--but it was great to share my story with them. They have a new person come in every month to talk about their experience and I think that's a great idea. It shows the staff the results of all their hard work! There were a few questions after:

Do I still have CF? Yes, I do. I'm very fortunate in that I don't have a lot of other CF problems. I don't have diabetes, my kidneys behave, and my sinuses are good. I am pancreatically sufficient, so I don't take enzymes and I'm not malnourished (hahaha, malnourished. Ha. Right. So far from that now.) Other people aren't quite that lucky, but for me, my CF problems were mostly confined to my lungs. But since CF is a genetic disease, I still have it--the transplant didn't change my genetic code. But my version (so to speak) of CF was helped enormously by the transplant.

How long was the wait and what was it like? The wait was about 40 days, give or take. It was hard to do everyday things like brush my teeth. Think about that. Brushing your teeth isn't exactly hard. But I couldn't do it and breathe at the same time. After, of course, totally different story.

I also talked about the advantage of having a center so close to me. In central Ohio, we're blessed to have two lung transplant centers within a few miles of each other! If I'd had gone to Cleveland, Pittsburgh, or St. Louis (the other centers that my CF team sent people for transplant), my mom and I would've had to relocate, for months, leaving my dad and my two siblings (who were both still in school at the time) to fend for themselves. It wouldn't have been pretty. It was so much easier to be twelve miles away from the center and to be able to go home right after my discharge, and not stay in an apartment or Ronald McDonald house sort of thing for months on end.

The anniversary, officially, is in about two weeks. We'll be in Charleston the day of, and I'm so excited for that!

If you're not an organ donor, please be one? Please please? You can find information and sign up here.