Emily M. DeArdo

writer

transplant

Doing The Best You Can With What You Have

CF, health, transplantEmily DeArdo1 Comment
Under the Wave off Kanagawa (Kanagawa oki nami ura), also known as the Great Wave, from the series “Thirty-six Views of Mount Fuji (Fugaku sanjurokkei)”

Under the Wave off Kanagawa (Kanagawa oki nami ura), also known as the Great Wave, from the series “Thirty-six Views of Mount Fuji (Fugaku sanjurokkei)”

I was talking to a friend of mine the other day, who, like me, has had some health problems. And we were talking about how the things you do to save your life can later come back and have unplanned consequences.

“I’m dealing with that right now,” I said. We talked a bit more about how frustrating this is—but then we asked, Would we have changed anything?

And the answer is, probably not.

So I thought I’d write about this.

*

After my clinic visits, we always have to wait for blood test results. One of them that we’ve been watching lately is called the A1c, which I talked about in the last post. Basically, it’s a batting average for your blood sugar. And ever since I entered menopause it’s been going up….and up….and up.

This is not good. The more sugar is in your blood, the more that can lead to lots of problems. Problems that I don’t want.

This isn’t CF related diabetes, because my pancreas still works. (I don’t take enzymes to digest my food, so that’s how we know….) But at the same time, my body is clearly becoming insulin resistant.

I’ve been on steroids for 14 years. So the thought is that steroids + menopause=unhappy A1c.

Now, I can’t go off steroids. I’m on a low dose—5 mg a day. There is a 2.5 mg dose. And I might try that. But the problem is, my body has adjusted to them, and my joints, especially like prednisone. A lot. I had CF related arthritis before my transplant and that is helped a lot by the prednisone. I notice when I miss a dose. So when I tried to go off prednisone a few years ago, my body said, “nope.”

Why am I on prednisone? Because I had a transplant.

Which saved my life.

But we know that prednisone has a lot of side effects.

*

Another area where side effects come to play? Cancers. We’ve talked about that a lot here.

And, not pred related, but med related—my hearing loss.

So, these are all things that have happened as a result of staying alive.

But—what were my choices?

Well, to take the meds, or die. Really. It was that stark, in a lot of cases.

So I decided to take the meds. And live with the side effects.

And that can be sort of sucky, to be honest. Because you do things to save your life, but then…there are consequences, and you have to be ready to deal with those. It’s a long-term gamble.

But, and I said this to my friend, we do the best we can with the information we have. We can’t think about 5, 10, 15 years down the road when we’re looking down the barrel of the gun right now.

If you’re in that situation, I know how you feel. I know it’s hard not to google and think about the future. But really, in my opinion, the best thing to do is to talk to your doctors, see what the options are, and then go with what is best—for you, for the situation, for what needs to happen to achieve a good outcome.

Does that mean you’ll be thrilled with what you have to do? Well, no. I’m not thrilled that I’m injecting myself with five units of insulin every night. But it could be worse.

This is what I have to do to stay alive—to see year 15, year 16, year 17….post-transplant.

Now, are there things I won’t do? Yeah. I’ve always said I wouldn’t go for a third transplant. That, to me, is a bridge too far.

But right now, I take the insulin, I adjust my diet, and I do the best I can with what I have.

Trust, Courage, Faith, and Transplants

Catholicism, essays, transplantEmily DeArdo1 Comment
Courage, daughter! Your faith has saved you. --Matthew 9_22.png

I had a holy hour last week before Mass, and as I was paging through my Magnificat, I noticed a few things.

Do you see them, too?


Matthew 9:1-8

The Healing of a Paralytic. He entered a boat, made the crossing, and came into his own town. And there people brought to him a paralytic lying on a stretcher. When Jesus saw their faith, he said to the paralytic, “Courage, child, your sins are forgiven.” At that, some of the scribes said to themselves, “This man is blaspheming.” Jesus knew what they were thinking, and said, “Why do you harbor evil thoughts? Which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk’? But that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic, “Rise, pick up your stretcher, and go home.” He rose and went home. When the crowds saw this they were struck with awe and glorified God who had given such authority to human beings.


And here….

Matthew 9:18-26

The Official’s Daughter and the Woman with a Hemorrhage. While he was saying these things to them, an official came forward, knelt down before him, and said, “My daughter has just died. But come, lay your hand on her, and she will live.” Jesus rose and followed him, and so did his disciples.  A woman suffering hemorrhages for twelve years came up behind him and touched the tassel on his cloak.  She said to herself, “If only I can touch his cloak, I shall be cured.”  Jesus turned around and saw her, and said, “Courage, daughter! Your faith has saved you.” And from that hour the woman was cured.

 When Jesus arrived at the official’s house and saw the flute players and the crowd who were making a commotion,  he said, “Go away! The girl is not dead but sleeping.” And they ridiculed him. When the crowd was put out, he came and took her by the hand, and the little girl arose.  And news of this spread throughout all that land.


Do you see it?

Before Jesus heals these people, he tells them to have courage.

A lot of people tell me I am brave.

I am not brave.

Doing what you have to do to keep on breathing is not brave. It’s necessary. Now, granted, I had to make the choice to go for transplant. If I hadn’t done that, then I wouldn’t be sitting here, writing this, precisely fourteen years later. In fact, as I write this (at 10:47 a.m.), fourteen years ago, I was in the OR. My surgery began around 6:45 in the morning (at least that’s when the epidural started, I think). So, yes, I made the decision to go for transplant. Was that brave? I don’t know. I don’t personally think so.

Really, though, a lot of the time, I did not feel brave. I did not have the courage Jesus is telling these people to have.

But as I looked at these verses, I thought, this is right. They need courage for what’s about to happen. Because it’s scary, to be suddenly plunged into a world you didn’t think was possible, something you had hoped for, but didn’t think would actually happen. It’s sort of terrifying.

These people had faith that Jesus could cure them. And I had faith, too. I’ve always had it. I’ve never doubted my faith. But did I have courage? Did I trust Jesus?

Ah. That’s the slow growing bloom of faith. Faith is the seed. But courage and trust? That’s later. That’s a result. It’s the result of a lot of dark nights and lots of tears and feelings of this is never going to happen.

And I can say that even if I hadn’t been transplanted. Remember, God is always good. I would’ve been cured, either in heaven, or here on earth. And I was lucky that I got my miracle here. Some people aren’t as lucky as I was. That’s the sobering fact.

Throughout, though, Jesus tells us to have courage, because something is happening. And it might be something great. But in the moment, there is fear. There is death, as we see with the little girl. But then…

life.

Even if it’s life on the other side of death. We know how this story ends. We know that death is not the winner.

Trust in Jesus sounds great, and it is great, but until you’ve really had to surrender your will, to say I have no control over this—that’s when you need the courage. It takes courage to trust in God.

Jesus knew that. And I think that’s why he tells these people to have it, to grasp it, to be strong in the moment. Because in the moment when the miracle happens, you might feel like you’re going to drown—save me, Lord, I’m perishing!

If I look brave, it’s really because Jesus gives me the courage to take the steps forward. It’s not my courage at all. It’s his.

My Dominican saint is Bl. Lucy of Narni—and yes, she’s the one C.S. Lewis used as inspiration for both the name “Narnia” and Lucy Pevensie. I’ve always loved Lucy. But remember, Aslan tells Lucy, “Courage, dear heart.”

We need to be reminded to have courage, to keep trusting.


Thomas More.png





Day In the Life: Yearly Transplant Testing

CF, health, transplantEmily DeArdo1 Comment
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I thought that I’d give you a little glimpse into a day at clinic, but in order to get the most bang for your reading buck, I chose do chronicle a day where I do yearly testing—as in, clinic, blood draws, X-rays, CT scan, and a DEXA (bone density) screening. So come along with me on Monday’s trip….

6:30 am: Alarm goes off.

7:20 am: Out the door, to the hospital!

It’s not raining! Yay!

It’s not raining! Yay!


The hospital is only 12 miles away form my place, so that makes it easy to get there, but morning rush hour can be a beast. Fortunately, it’s not bad, and I get to the parking garage at 7:45, after being asked for the nth time if I’m a visitor. No, I am a patient. Deep sigh.

Excellent parking!

Excellent parking!

The hospital has a nature theme, so there are lots of animals and other nature-ish things around. In case you can’t tell, those big green things are acorns.

7:50: Heading to Crossroads Registration

dooooown the long hallways.

dooooown the long hallways.

I passed this bunny on the way in:

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Registration is in the middle of the hospital complex and sometimes it can be a pain. But there was a nice lady behind the desk, the kiosks worked, I had my wrist band, and was on my way to infusion for my first appointment….




Up we go!

Up we go!

The tower building used to be the main hospital—I’ve spent a lot of time here. :) The fourth floor (4AE) where infusion is is where the adult CF floor used to be. It’s where I almost died and it’s where I waited the night my transplant came.

The 4th floor is also home—or was—to the PICU. So yeah, the fourth floor has lots of great memories. (Seriously, some are good. Most are….not.)

It does, however, have a good vending machine.

Anyway!

8:00 Infusion

In the waiting room—Muppet Babies on TV.

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Great view, huh?

Great view, huh?

Since I was early, I got taken back early—yay!—into one of the rooms. Like I said, these used to be patient rooms. Now they’re smaller. Most of infusion is separated by walls and curtained off areas, but since I’m a transplant patient I go into an actual room.

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Sometimes infusions last for hours. Really, the reason I go to infusion isn’t to get meds, it’s to get my port accessed for blood draws. So the room has a bed, and the other areas have recliners, if you’re staying. I’m not. This is an in and out thing.

My great nurse comes in and sets things up….


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Fortunately no vitamin levels today, so only three tubes. We could not get that out of my veins. So—port!

The blurry part is the strips that have my ID number on them and get attached to various things when the blood goes to the lab.

And yes, everyone must wear PPE—personal protective equipment—when they access the port. Gowns, gloves, masks, and hair nets. It’s like we’re doing surgery here.

So, we’re running ahead of the game, but then my port decides to be dumb, so we have to wrestle with it for ten minutes, but finally it cooperates and we get the blood. Then we flush the line with saline and heparin, and de-access me. Yay!

I am free to go back down to the main floor!

Hallway out to the waiting room.

Hallway out to the waiting room.


Doooown we go.

Doooown we go.

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This used to be part of the old ER—the parking lot to the right is where we dropped me off the night of my transplant.

(Bunnies ahead!)

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This used to be “main” radiology, and the little hallway you see above used to run between radiology and the ER. This also used to be the main hospital through way—if you went to the end of this hallway you’d reach the main lobby. But I digress!

I’ve been coming to this part of the hospital for twenty-six years. It’s very familiar.

As is this hallway, but now they’re changing it! I don’t know what to do ! :-p




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8:40 AM: Chest X-ray

So I have my probably five millionth chest x-ray (that’s a conservative estimate), before which I ran into my post-transplant buddy Amber, who is also going to clinic. It’s always fun to see friends!

So, out of radiology, heading toward clinic, and passing the fish tank and the satellite gift shop.

(Yes. There are two gift shops)

Sharkbait!

Sharkbait!

Past the coffee bar….


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To the elevators, and up to good old fifth floor CF clinic! :) Also been coming through this door for 35 years. :)

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9:00 AM: Clinic

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This is where I spent the bulk of my time. On a “yearly” clinic day, everyone comes in: the doctors, the dietician, the social workers—and things get a little more in-depth. (Not so much on the doctor end, since I see him every three months.)

*The dietician asks me to talk about what I normally eat: meals and snacks. She’ll then give suggestions. Right now, we’re dealing with weight loss and the silly A1c levels (more on that in a bit), so we want to make sure I’m eating the right combination of things. She made some suggestions, I asked some questions, and it took about a half hour, probably. I really like the dietician so that helps. :)

*My Doctor. I see one of the two docs on the team every three months. This time, he was happy with how I was doing, and we talked about the A1c thing.

Basically, the A1c is a test that looks at how your blood processes sugar all the time—it’s like a batting average. It’s how much sugar “sticks” to your red blood cells. For normal people, you want it to be under 6% For post transplant people, you want it to be in the low 6%, because the prednisone we’re one messes with how our bodies process sugar. So we aren’t aiming for normal people normal, but abnormal normal. :)

I had been testing my blood glucose levels (BGLs) for a few months, and my doctor didn’t think my numbers were really all that bad. (Again, we’re looking at abnormal normal here. Not normal people. ) He did say that if my A1c was up, then we’d probably have to start me on a low-dose, long-acting form of insulin. It wasn’t really because I hadn’t done what they asked—I lost weight, I’m being more active, and I’m checking my BGLs—but because I’ve been on prednisone for 14 years, and I’m in menopause, which, as we know, messes with hormones like nuts.

But my Chest X-ray looked good, and my PFTs were up a point, so lung wise, things are great. Sinus wise, things are great. I’m seeing all my specialists like I’m supposed to and I keep clinic informed of things there.

My doctor wanted me to do some other PFTs so I had to go back to the lab, but we’ll get there in a second. :)

*Social Work: Normally, they just come in and ask how I’m doing and give me a parking token. Since I’m working with some insurance insanity right now, we had more to talk about and they are going to look into some things for me which is massively helpful. So I was happy!

Finally, Pulmonary Function Tests, aka, PFTs.

Normally, when I say I’m doing PFTs, what I mean is I’m doing spirometry. Aka, the thing where you sit down, put clamps on your nose, and breathe in through a tube connected to a computer. You breathe easily for a few breaths (for me it’s two) and then on the third you take in a huge breath, like you’re about to go underwater, then blow it out fast and hard.

You then get results that look like this:

swirly bit is blocked out personal info. :)

swirly bit is blocked out personal info. :)

Now, this is in liters, and I generally look at percentages. As of yesterday I had about 54% lung function, which is good for me, and that’s the “moderate restrictive defect” part. It’s not anything to worry about, it just says that at the bottom.

I also did two other kinds of tests which check how gases are diffused in my blood and other breathing related things. Those were also fine. So yay there.

11:00 Finished clinic, back to radiology!

I finished in clinic, said goodbye, and my nurse said she’d email me with follow-up things. I then headed back down the elevators,

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past the fish….



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And back to radiology.

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This was a bone density scan that did scans of everything—we did hip focus and lumbar focus, and then the whole body. This is important because prednisone (don’t we love it?!) also causes issues with bone density and causes osteoporosis. Fortunately my bones are AWESOME. I hope they continue to be awesome—I haven’t gotten these results back yet.

FINALLY, the LAST TEST!

11:45 am: Chest CT

so heading back through the center of the hospital, to the Magic Forest!

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And into the CT room:


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This is just a regular old CT scan of my lungs to make sure we’re not missing any small things that might be happening that regular X-rays don’t pick up. Easy peasy.


So I was free, and said goodbye to the bunny, at around 12:15!

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I was really hungry at this point, because I’d only had a little breakfast—you’re not supposed to eat a lot before clinic visits in case something scary shows up in testing and you have to have a bronchoscopy that day. (Yes, that has happened to me before.)

So I was hungry and had walked about a mile and a half, not kidding, in the halls of the hospital. I hit my move goal for the day at 3 PM, so I knew that I’d get a decent workout on this day, lol.

This used to be a longer day—there used to be more tests. So I’m fortunate that this was a pretty quick day and everything went well, except for the silly port being stupid! :)

Joy In the Morning (OR: How I get up every day and do life)

CF, essays, transplantEmily DeArdo2 Comments
My siblings and I on my brother’s wedding day.

My siblings and I on my brother’s wedding day.

Warning: This might be a sort of rambly post. Settle in.

I was visiting my therapist last week. Yes, I see a therapist. I have since I was 17. A lot of people with CF do (not all, but a lot). I have no shame in telling you that.

So anyway, I was at an appointment with my therapist, and we were talking about how I was a bit maxed out on doctor visits. I mean, in almost thirty-seven years of life, I think my quota’s been hit, right?

And that doesn’t even count the other “stuff” we do—Mom accessing my port every month, the meds I take (which are vastly less than pre-transplant, btw), the blood glucose tests I’m doing twice a day now, etc. It’s a lot. It’s less than pre-transplant in some ways, and more in others. I have a colonoscopy every five years, which means one next year. I have a mammogram in April, because my mom had breast cancer and so my sister and I have to start our mammograms at age 37 (ten years before Mom was diagnosed). And then there’s dentists and eye doctors and the things normal people do.

So, yeah, it’s a lot.

This led to talking about compliance, which means, doing what the doctors tell you to do. And I told a story that I thought was illustrative.

When I was about seventeen, I was having a regular clinic visit, an I saw a sign on the wall of the exam room, saying that if you were 95% compliant with taking pulmozyme (one of the CF meds), you’d get a prize at your next clinic visit, see your nurse for a chart to win! Stuff like that.

Now, I never did these, because, generally, I was too old. This stuff was generally for the smaller kids, to get them in the habit. But what I thought was interesting was that the center wasn’t pushing perfect compliance.

Because that doesn’t exist.

Now, look, I’m not saying I was a slacker. Because I wasn’t. My mom, for one, wouldn’t let me be, even if I was disposed that way. I take my meds. I did my treatments. But yes, sometimes there were times where I put in a few minutes of precious sleep over a “perfect” Vest treatment, when I was in college. Sometimes I just went to bed. Not often, but sometimes. I wasn’t “perfect”, and I’m not perfect now. To be “perfect” now, I’d be a MESS. I’d be taking meds all day long, worrying about timings and if this was going to interact with that and how does this work and oh my gosh my brain is going to explode!

I take all my meds, and I take them twice a day. Is that perfect? Well, no. It’s not optimal. If can affect absorptions. *

But here’s the thing—I want a life. I don’t want to live in a glass bubble.

I went to school. I did activities. I rode bikes with my friends and went to the pool in the summer with them and then we went to the coffee shop and played board games. I had sleep overs, where I didn’t bring my equipment! I went on choir tour! (And yes, I brought the mini nebulizer!) I went to college.

Honestly, if my parents had tried to wrap me up in the bubble, I would’ve had a fit. I always wanted to be like everyone else, as much as possible. As Erin once said in a Home Town episode, I’m like a wild pony, and I need freedom!

(Not too much freedom. But enough freedom.)

So anyway, talking about all the things I had to do every day, my therapist then said, well, how do you do it? I mean, what gets you up in the morning?

And then I said, “well, that’s sort of what my book is about.” (Because it sort of is. Sort of. The book is sort of about a lot of things! )

But here’s what it comes down to:

Yes, there are a lot of things I have to do in my life. More than the average bear, that’s for sure, so when people say “well, you just have to suck it up and do X,” I want to roll my eyes, because that’s a big chunk of my day. (I’d wager it’s a large part of everyone’s day. As my grandfather used to say, “that’s why they call it work!”) But yeah, for me, and for other people like me, we have a lot of stuff on a daily basis that isn’t fun but must be done, and you just do it and don’t whine about it.

But what gets me up in the morning? Well, a lot of things. I’m very in touch with my inner child and I get excited about really little things. When I was working in the Senate, a lunch date with my Dad was enough to make me excited for the day. Today, it’s stuff like, a package is coming in the mail! It’s a hockey night in Pittsburgh! I get to write today! Oh, this book comes out! My book is in at the library! Chuy’s with Mary!

I’m very easily amused. And that helps me, I think, because it overrides a lot of other things that are not so fun. (Like making myself go to the gym. And poking my fingers. And doing doctor paperwork.)

But a big part of this, and this is what I’d say to anyone facing a chronic illness, is this:

Go live your life!

You really, really, really cannot hole up in your house and be all sheltered. You can’t. GO LIVE YOUR LIFE. Go outside! Do things! Be free! Have fun! Go to the park! Go swimming! Pet a dog! Whatever!

Yes, treatments are vital. YES, compliance is important—if I hadn’t been a compliant patient I NEVER would’ve been listed for transplant! But if you’re caught up in PERFECT, then…..you’re going to miss things and your life will be so small.

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Seriously. Do what the sign says.

Live your life. Take your brain with you.

*: As far as absorptions: the only meds I take that NEED to be taken around the same time every day are my immunosuppressants (the prograf). That’s important. However, I am also far enough out that if I’m off by a few hours in a dose, the world will not end. When I traveled to LA, my nurses told me to just take the meds on LA time and not worry about being exact. I used to take my meds exactly at 8 AM and 8 PM (even rushing to the lobby of the Ohio Theater to take meds before a symphony concert started). Now, it’s generally around those times. I’m not quite as OCD.

The meds I’m talking about here are things like my nexium and magnesium supplements. You’re not, really, supposed to take them together. But if I didn’t, then I’d be carrying around meds all day and thinking about when to take them, as opposed to thinking about things more worthy of my brain space! It’s not a huge deal to take them together. But yes, some meds do have to be taken at certain times, and when I do those (like home IVs) then, yes, it’s on the dot as much as possible. You usually have about an hour leeway on either side of the dose time (for example, if the dose is due at 6 PM, you can do it at 5 or 7, but not 4 or 8.)








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: 

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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. 

 

Stop waiting around

CF, essays, transplantEmily DeArdoComment
Trivia night victors! 

Trivia night victors! 

Guys. Stop waiting to do things. 
I see this a lot with transplant people--or people with CF--but also with people who are just nice, normal people. 
"Oh, I'll wait until later to do that."
"Oh, someday...."
"Oh, it's just not right right now."
Guys. 
If you want to go to school, go. 
If you want to learn something, learn it.
If you want to bake cookies all day, do it at least once.
If you want to learn Spanish, sign up for Duolingo. 
STOP WAITING.
Stop saying, Oh, when this happens. 
Nuh uh. 
DO IT NOW.
Yeah, sometimes it's not plausible. I get that. Sometimes you have to save money. I get that too. 
But then DO IT. Save the money. Make it happen. Dedicate yourself to it. 
Don't wait. 
Don't use your body as an excuse not to do things. "Oh, I have crappy lung function, I can't go to school, I can't work, I can't do anything by lie here and watch Netflix."
I've been there. Before my transplant, I slept for 13 hours a day. Seriously. If not more. When I was "awake", I was sort of zombie-fied. And that's what happens when you're close to death. 
But EVEN THEN--I went to work. I went out. I saw my family and friends.
Yes, when life changes, more opportunities can open up. 
But you will lose your life waiting around for things to happen. 
So STOP IT. 
Learn the things. Do the things. LIVE YOUR LIFE. Even if you're almost dead, you can STILL LIVE YOUR LIFE while you have it.

I am not brave

essays, health, transplant, CFEmily DeArdo2 Comments
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Let's just get this out of the way. 

I am not brave. 

I am not courageous. 

I am definitely not a saint. 

Yet, people call me, and people like me, these things. 

This makes me really uncomfortable. 

Having CF, and having a transplant, do not make me brave. 

Are you brave when you get up, get dressed, have your breakfast, and go to work? When you do the dishes and get the mail and pay the bills? No. You're living your life and being responsible. 

When I did my treatments, took my enzymes, went to clinic, did IV meds...that was my life. When I take my meds in the morning, when I go to clinic now, that's my life. That's completely normal to me. It's not brave. It's not courageous. 

Deciding to have a transplant? It was just deciding to live my life, to do what I needed to do to extend it. I wasn't afraid of dying on the table, because I knew without the surgery, I'd die anyway. So, choosing transplant wasn't brave. It was pragmatic. 

Going to college? Getting my degree? Working? Again, no brave. Not courageous. Living my life. That's all.

When I see stories about how "Brave" people like me are, because we live with illness, I want to scream. It's not brave. It's just doing what you have to do with the hand you're dealt. What would you do? Curl up in a ball and refuse to leave your room? Refuse to do treatments? I guess. I knew CF people who did. 

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Bravery and courage are not what I have. I hated selling Girl Scout cookies. I'm not brave. I won't sky dive or even do a high-ropes course. I'm NOT A SAINT. I just am. I live my life the way all the rest of you do. This morning, I took my pills with my coffee. I've been taking pills with my breakfast since I was about two years old. It's not out of the ordinary. It's not brave. I'm not brave when I "let" people stick me multiple times to get an IV in. That's not bravery. That's what I have to do. What's my other option? 

My parents are brave. They hold it together when everything is threatening to fly apart. I am not brave. I'm just doggedly stubborn. 

Brave people are the people who rushed into the World Trade Centers on 9/11 to save the people inside, knowing they would probably die.  Navy SEALs are brave people. Soldiers, firemen, nurses, first responders--they're brave. I don't put my life on the line. I don't do anything to save other people. 

So please don't call me brave. I'm not. 

********************************************

(Catholic 101 is now available! Pick up your copy here: https://gum.co/RMkqu

 

Twelve Years, and a Celebratory Pork Chop

food, health, transplantEmily DeArdo3 Comments
Me as an intrepid toddler. 

Me as an intrepid toddler. 

Twelve years is a substantial amount of time, if you think about it. It's your entire education from first to twelfth grades. It's an entire pro sports career, if the player is lucky. Ad it's how long I've been alive with another person's lungs inside me. 

It's insanely lucky. It really is. When I consider the people who don't get listed, who don't get the call, and then who don't survive past five years (which more than half of female lung recipients don't)....it's amazing to be so gosh-darn lucky. It's miraculous, really. 

So I thought it would be appropriate to share a good bit of food with you. Before transplant, I hated food. I liked cooking and baking, but I really didn't like eating much of it. Post, I loved it. The entire world of food opened up to me. 

Just recently I've been working on tempering the two--eating what's good for me, in good portions, and not going overboard on the stuff that's delicious but not so healthy. I'm seeing results on a lot of levels, which is exciting, but I'm also learning how to embrace cooking really great food that's also not terrible for me. Thus, this pork chop recipe. 

You can eat it just as it is, or serve it with some buttered leeks

Here's to more celebratory pork chops. 

Celebratory Pork Chop

This is the best pork chop you will ever have. I guarantee it. 

Start with two thick pork chops, about an inch. Don't trim the fat off. Season with with kosher salt and fresh ground pepper. 

Preheat the oven to 375. Drag out your oven proof skillet (cast iron is great). Heat it over medium high heat, and add olive oil to it. When the pan is hot, add the chops. Cook for three minutes on each side, then throw the whole thing, pan and chops, into the preheated oven for 30 minutes. Remove the pan and put the chops on a plate to rest for four minutes. 

Make a pan sauce--in the hot pan, add 1/2 cup water or stock, let it reduce a bit. Add 2 teaspoons dijon mustard and a good knob of butter--about a tablespoon, but whatever odd pieces you have in the fridge. Whisk together. Serve the chop with the pan sauce. 

Enjoy deliciousness. 

(Also, are you an organ donor? Please be one. When I was first listed, 18 people died every day waiting. That number is now 22 people, and the national list stands at 118,000 people who are waiting for new organs.  Sign up here. ) 

Giveaway: A copy of "Cultivate"!

books, goal setting, give aways, transplantEmily DeArdo6 Comments

In honor of my twelve year transplant anniversary, which is tomorrow (holy cow, that sounds amazing to write--incredible to believe), I'm giving away a copy of Lara Casey's new book, Cultivate, which you've all heard me babble on about for months now. It's so good, folks. I'm so excited to share it with you! 

(You can read my review here, and my preview here)

What do you want to cultivate in your life? Share it in the comments! It can be anything, big or small! 

Transplant side effects: Skin Cancer

health, transplantEmily DeArdoComment

I generally don't worry about statistics. 

Before transplant, I caught bugs that very few people caught. Non-infectious Tb? 4% of the CF population gets that. The bug that almost killed me in college? One other person in the world. Seriously. Not kidding. At least, documented, one other person

Post-transplant, my stats are flipped. I'm still in the small percentages, but it's good. I'm one of the 55% of women who made it to five years post-transplant. There isn't even data for 10 year survival rates on the UNOS (United Network for Organ Sharing) website--and I'm looking at hitting 12 years in July. 

So when my transplant coordinator, way back in that first July, talked about skin cancer and sun protection, I just sort of nodded. Our ("our" being transplant recipients here) risk of getting skin cancer is 10x higher than the general population. But, I've always been really good about sun protection. I've burned maybe three times in my life. I keep lots of sunscreen around. I seek shade. I go to the dermatologist every six months to get checked out. I am fair, but I'm also Italian, so that probably helps a little bit--but I am generally quite protective of my skin. I'm very familiar with SPF and its iterations in products. 

But. All that being said--eventually, the statistics might catch up with you. 

And so it was that, when I visited the dermatologist last week for my yearly skin exam (I see her more often than that, but this was the annual full body check), she biopsied three suspicious spots. 

And all three of them came back as types of skin cancer. Squamous Cell Carcinoma, (SCC) to be exact. 

So tomorrow I'm having mohs surgery to have these spots removed. We're not doing all three at one go; we're breaking it up into two sessions, one this week, and one next. Mohs surgery involves the surgeon (which my dermatologist is) taking very very very thin slices of skin, examining them under a microscope, and checking for cancer cells. She removes these layers of skin until the microscope shows no more cancer. And voila! No more cancer! So I don't even want to call it cancer, because seriously, this is like, minor leagues. I go in, I get some skin cut off, and we move on. Easy. 

Now, that being said, SCC can be fatal. 8,000 people die of it in the U.S. every year. And of course now I even have to be more careful about sun protection. All my v-neck t-shirts? Gone. I'm going to be adding to my hat collection. There are going to be multiple SPF products in my purse at all times. 

But I can get this fixed and keep it in check with regular dermatologist appointments, and possibly some immunosuppression tweaking. Because that's the big part of the issue. 

Some of the meds I'm on  make the skin photosensitive--really sensitive to light, and can cause it to burn much faster than a normal person's. Hence, the good sun protection strategies I had in place. 

But the immunosuppression drugs also keep the immune system from functioning properly, as we know. And that includes hampering its ability to kill potential cancer cells. 

I've gotten rid of one med that made my skin photosensitive--good! And now we're trying to see what we can do with the immunosuppression. We might not be able to do much, because there's not a wealth of pharmaceutical products we can choose from, here. But we'll see what can happen. Obviously, we want to keep my lungs in tact! And if push comes to shove, that's what I'm choosing. I can wear more sun screen and have my skin checked more often, but it's really hard to find a new pair of lungs, as we know. 

I'm also using this post to implore you to protect your skin, especially if you're fair like I am. Seriously. I know I'm a a much higher risk for these things than the general population, but skin cancer, in general, is skyrocketing in the U.S. Tans are not cool, people. Don't go to tanning beds. Don't "lay out" for hours to get toasty brown. That's not a good look.

  • Wear hats (big sun hats when you're at the beach--baseball caps don't cut it. If you do wear a baseball cap, put sunscreen on your ears!).
  • Wear sunscreen all the time. You can get sunburned on a cloudy day. 
  • Get sunglasses with UV protection in the lenses.
  • If you really need the extra protection, do what I do and get face cream with SPF in it. (This is my favorite. And if you get the big one, it will last you almost a year. Seriously. Mine has. So it works out, budget-wise, because it's cheaper than the drug store bottles of moisturizer that you keep buying. And it's very hard to find SPF 30 in a moisturizer!) And it's worth it to get SPF protection anyway, even if you just want to minimize/delay signs of aging.There's also Clinique City Block.
  •  Fresh's Sugar Lip treatments are what I wear during the day now instead of lipstick, because SPF 15! I really don't want to get part of my lip cut off, guys. And neither do you, I bet. Or grab a regular lip balm with SPF in it. Those aren't hard to find. Foundations and BB/CC creams also have SPF in them. (Bobbi Brown, Supergoop, and Smashbox are three brands to check out.) 
  • This is a revelation to me--hand cream with SPF 40. Seriously? Awesome. 
  • And finally, get clothes--or at the very least, swimwear--with UPF, which is like SPF for clothes. I started wearing one of these last year, and I'm getting another one for our trip to the beach this year. Yes, I can go to the beach, and I'm going to be there with an umbrella, lots of sunscreen, this coverup, and hats! Other companies that have UPF items include Lands End and Duluth Trading Company. It's becoming more and more common, thankfully. 

Anything you do to protect your skin is better than nothing. So even if you're not nearly as high risk as I am, do yourself a favor and learn how to protect your skin--and do it. Be smart. 

 

Thoughts on Health Care/ACA/Etc Part One: Some background

healthEmily DeArdo1 Comment

I realize that's not the sexiest title, but I thought that it might be worth sharing some of my thoughts on health care, as someone who both uses the health care system extensively, and someone who worked in government. And since, if I tried to make this one post, the post would be approximately the length of Moby-Dick (and about as fun to read), it's going to be several posts. 

Today: My background in health care and using the American Health Care System 

Tomorrow: Working in Government and Seeing How Things Work (ie, nothing is free!) 

Day Three: Suggestions

I wasn't diagnosed with CF at birth. I was diagnosed when I was 11. However, I had epilepsy before that, and my first hospital admit was at the age of 9 months, so I've been using the health care system intimately for a long time. I always had insurance under my dad's work plan. Sometimes the plan would change and we'd have to deal with companies that weren't quite as good as others (Cigna, I'm looking at you), but I always had insurance. And it was insurance that worked, meaning it paid for the big things, like a two-week ICU stint my sophomore year of college, and lots of not-so-big things, like IV antibiotics at home. 

 I always knew that I had to have a job that would provide good health insurance. Salary wasn't as much of a priority as that was. Working for the government was ideal, because, while the pay was less, the benefits were good. I had three choices of health insurance plans. I chose the most expensive because I knew that my doctors at Children's liked them (meaning, they didn't have to argue with them too much), and they were what I'd had with my parents, so we were familiar with their coverage and co-pays and all that jazz. We knew how they worked. Like I said, this was the most expensive plan and took the most out of my paycheck, but that was secondary to having insurance that was good and would cover things, like the transplant I knew I was going to have soon.  

At that point--2004--I knew I had to have a job, because I couldn't stay on my parents' plan. Back then, you could only stay on your parents' plan through college. The details are sort of fuzzy now, but I think there was a way I could've stayed on their plan, or something, because of all my issues. 

The other option for health care coverage, if I didn't get a job or didn't want to get a job, was Social Security Disability Insurance (SSDI), but I never even considered that, because 1) I wanted to work, 2) I didn't consider myself disabled. Yeah, OK, so my lungs were crap and I spent a lot of time in hospitals. But I could work. I had a brain that worked, I was intelligent, and I was going to use my fancy degree, dang it! I never considered not working, or not going to college.  

So, I had a job, I had health insurance. My  plan paid for my transplant--the surgery, the hospitalization after, the rehab, the drugs. It was good. It did what it was supposed to do, in short. I went back to work and continued to have health coverage. And I still, today, have health coverage (although not as good). 

Obviously, I am a person who requires lots of health care stuff. I require multiple medications to survive (although not as many as I did pre-transplant. Yay!). I wear contacts. I have a cochlear implant. I see a pulmonologist, a cardiologist, an ENT, a dermatologist (because my skin cancer risk is about 10X as high as the general population), a dentist, and an optometrist. In other times during my life, I've seen a rheumatologist, a neurologist, a plastic surgeon, doctors who treat burns, a dental surgeon, orthopedists (two broken bones), and a general surgeon (for when my port was implanted). It's easier to list the departments I haven't been seen in at Children's than the ones I've seen.  I am expensive to keep alive. 

And even with insurance, my family and I have to pay for things. A cochlear implant upgrade? $10,000. Visits to the infusion lab at Children's for blood draws? A few hundred. Pulmonary Function Tests, chest X-rays, CT scans, and EKGs? Yet more money. 

Now, that's the insurance side of it. How about the waiting side of it? Do I ever have to wait for care?

No. 

That's the quick answer. The longer answer is, sort of. My ENT, for example, works at various hospitals. When I need sinus surgery, we do it at Children's because they are so familiar with me, and that's where my lung transplant team is. So if I need surgery, I might have to "wait" if he doesn't have an immediate open slot on a Children's Surgery Day.  Even then, though, it's maybe a month or two month wait, and that's because my sinus surgeries are generally not urgent deals. They need done , but it's not like I'll die if they're not done quickly. 

I have never had to wait for any sort of testing or treatment. That's excellent. And it's almost always been like that, with any insurance I've had throughout my life. 

I obviously have a stake in how health care is "done" in this country. However, that doesn't mean that I fell to my knees in gratitude when the ACA was passed. But that's for tomorrow, when we talk about what I learned when it comes to government and health care. 

 

 

 

Reviewing the Situation

transplant, healthEmily DeArdo1 Comment

(If you're not a musical theater nerd, the title is from a song in Oliver!) 

So, being off prednisone is fun. Kind of. 

In case you missed it, at my last clinic visit on Halloween, my doctor gave me the go-ahead to go off prednisone for a month. Then I'd do PFTs (pulmonary function tests) again. If things were stable, I could stay off. If they were terrible, then I'd have to go back on. 

I knew that, even though I was only taking 5 mg of prednisone once a day, that being on it for 11+ years would mean a fairly rough adjustment period. I knew there would be joint pain, for one, because my joints are like that. 

So I said I'd give myself a week to adjust. 

Now I figure I better give myself the month. 

Prednisone affect so many things. It affects hormones, which is really the biggest issue. But what that means for the body is that, when you remove it, all or some of the following can happen while your body adjusts back: 

  1. headaches
  2. joint pain
  3. muscle pain
  4. low blood pressure
  5. low blood sugar
  6. dizziness
  7. trembles in your hand and feet
  8. extreme tiredness
  9. nausea
  10. vomiting
  11. low energy levels
  12. Increased anxiety
  13. Weight loss (YAY!) 
  14. dehydration 

That's just some of them. Mine have mostly been physical, and they keep changing. At first it was just the joint stuff. Then the low blood sugar set in, which means I need to have sugar/candy/juice/carbs around the house, to prevent my blood sugar from going too low. I can't say I'm sad to have to have these things around.....but yeah. I was Christmas shopping today and at the checkout counter I was hit with a I have to eat now or I'm going to faint and /or throw up all over this guy while we were talking about gift receipts. Fortunately I held it together until I could get to Jimmy John's and have myself some sandwich and Diet Coke. (I'm still main-lining the Diet Coke as I do this, because I'm still trembly, which is a sign of low blood sugar for me.) To keep the blood pressure up, more salt is recommended, too, but that's sort of always recommended when you have CF, because your salt levels are so wacky anyway.

I tend to have spurts of energy in the morning and then around 12:30-1:00 have the urge to just nap, or curl up and read, which doesn't require a ton from me. Then I get another spurt of energy from about 5:30-10:00. Let's just say my housekeeping is sort of...all over the place right now. I'm trying to keep up with it during the spurts of energy. I'll nap, and then go to bed around 10, because I'm tired again. 

I have lost weight from last week--yay!--and I've noticed that my appetite has decreased measurably. Also yay. Two good things. 

There's also a little bit of brain fog. I'm working on countering that with writing lots of lists and trying to get enough sleep. 

So if you know me in real life, and I seem like I'm cancelling more often, or I'm saying no to things, or you come to my house and it's like, wow, that's a lot of dishes in the sink: I'm working at about half power right now. :) 

In the end, I have no doubt that it'll work out fine. I mean, to be off prednisone is a good thing. It means my bones will be stronger. My blood sugar will be more normal, as will my blood pressure (although it was already pretty normal). I'll lose weight! My appetite will go back to normal!

But right now, it's sort of like, OK, body, you're getting what you want. Hopefully on the other side of this is happiness!! Prednisone-free life!! That's the goal that I'm working toward. 

But if I fall asleep on you, it's not you. (At least, I don't think so. :-P)

 

 

 

 

 

 

Seven Quick Takes No. 128

7 Quick Takes, health, transplant, writing, fictionEmily DeArdo2 Comments

I. 

ICYMI: I wrote other things than the 30 Days series this week! Here's a post on the Four Last Things--in time for Halloween. (Or it was when I posted it!) And part II of my Houston Postcards.

II.

I had clinic on Monday. The X-ray is good, the PFTs are in their normal range, so that's all happy. The biggest happy, though? I got to go off prednisone! Yayyyy!

Prednisone is a steroid that does some nasty things to your body. It keeps inflammation down, and it's widely used in the transplant world. In other types of transplant, people can go off this drug after a few years. In lung transplant, that's much less common. So I knew that there was a good chance my doctors wouldn't let me go off it. But I'm 11 years out, I'm stable....I might as well ask!

"These lungs are basically yours," my doctor told me, so he didn't see a problem with me trying it. I have to go back for lung function tests (PFTs) in December, to make sure that nothing evil is happening in my lungs. But right now, I am off prednisone. 

III. 

I'm not going to lie: the first few days of this have been rough. After only seven days, your body adapts to prednisone and makes changes in a lot of ways. I've been on it for eleven years. Tuesday, Wednesday, and yesterday were a bit tough as my body adjusted to being off it, especially in the muscle/joint department. They liked steroids. I'm hoping that now that I have good lungs that are not full of Evil Bacteria, my joints will be happy without the prednisone. (CF people often have a sort of quasi-arthritis--it's not "real" arthritis, but joint pain, stiffness, etc. happens.) I really didn't miss all that insanity, so I'm hoping that they're going to be happy without the pred. 

IV. 

On Wednesday I got to see one of my favorite singers, Canadian artist Loreena McKennit. If you're not familiar with her music, here's a few tastes: 

 

 

She's hard to categorize; sometimes she's labeled "Celtic", sometimes "new age", and sometimes "world", but I just say she's great. She rarely tours, and very rarely tours in the U.S., so when tickets went on sale for her one concert in town, my friend Suellen and I jumped on them.

Our AP English teacher, Mrs. Low, had introduced us to Loreena's Music, with "Lady of Shalott" and "The Highwayman"--so we've been fans for a long time now. (Yikes, 17 years!) Hearing her sing "The Lady of Shalott" in person has vastly added to my lifetime happiness. 

V. 

I'm also doing NaNoWriMo! This is my fifth year. I'm writing a story about a girl who enters a monastery. I've been wanting to write a novel about nuns for awhile, but having seen a lot of recently released novels that paint nuns in a less than flattering light made me move this story forward over other NaNo ideas. It also has a strong ballet component, so I'm writing about two pretty rarefied worlds in one novel. (And no, it's not like the ballet in Trouble With Angels. Ha!) I'm going to hit the 10K mark today. 

(If you're not familiar with NaNo: The objective is to write a 50,000 words novel from start to finish during the month of November.) 

VI. 

As soon as I hit 10K today, I'm watching The Crown on Netflix. Seriously. I love Claire Foy, I love the Royals, I love Netflix....it all works together for pure binge watching enjoyment! (And there's going to be a second season! WOOOOO!) The goal is to have 60 episodes over 6 seasons. So Claire Foy is playing Queen Elizabeth II in the early part of her reign. I'm so excited. Seriously. Royal geek, right here. 

(And Stephen Daldry is directing episodes! He directed one of my favorite movies, The Hours.) 

VII. 

OK, wow, that's enough fan-girling for one post. Sorry guys. :) Have a great weekend! 

Next week--my October reading wrap post. It's long! It's fun! 

Why "powering through" illness is a bad idea

health, transplant, essaysEmily DeArdo1 Comment
Not a good idea when you're sick 

Not a good idea when you're sick 

Hillary Clinton is in the news, not because of her presidential campaign, but because she has pneumonia. Apparently, she's been sick for awhile, but the official diagnosis came from her doctors/her campaign yesterday. 

There was a lot of talk on Twitter (and I presume elsewhere on social media) about how women just "power through" illness. "We do lots of things when we're sick!" women were saying. "We're awesome like that!" 

Well, actually, no, ladies. It's not awesome. Trust me. 

I did a fair amount of "powering through" for the first 23 years of my life. And no, I wasn't running for president. I was trying to be as "normal" as possible. That meant school, extracurriculars, summer jobs. I went to school when I had a noncontagious form of TB and was falling asleep in my first period class because I was so tired. I had a summer job the summer after I almost died and spent two weeks in the ICU. I was so desperate to sing in my college choir's big Christmas Festival that I went from the hospital, to class, and then back to the hospital because I finally realized that, yes, I was way too sick to be in class, much less perform in a three-hour concert. 

There were times my college boyfriends had to almost hold me down to keep me from going to sorority meetings, or Student Government events. 

Some of this pigheaded Irish determination was a good thing. It kept me involved, it kept me active, and I had a great time in college. But some of it was really bad. I didn't know when to stop. I worked up until the weekend before my transplant. Seriously. I had to drag myself out of bed every single day, but I was there at my office. The only time I wasn't was when I was in the hospital. I might have come in a little later in the morning, but I was there

After my transplant, this all changed. Partially because I was much more susceptible to illness, including getting illnesses from other people. I had to learn to say No to going to things when sick people were there. I told my friends that if someone was at a party and that person was sick, I wasn't going to go. 

I had to make sure I got enough sleep. This is huge for me. I realized that I needed 8-9 hours of sleep every night. I definitely had not been getting that. And when I was sick, I needed to be sick--and not "power through." Because powering through only made it worse

I had pneumonia this past winter. I was in the hospital for almost a week, and it took me more than a month to recover when I was back home. Pneumonia kills millions of people a year. It's a nasty, nasty bug. And yes, I'm more susceptible to it, and always have been. But people over 65 are in the high-risk group, too--and Hillary Clinton is 68.  

Pneumonia isn't something that you can "power through." There is "walking" pneumonia--a milder case of it. But it's something that requires rest, and lots of it. You feel like you've been run over by a truck. It's Not Fun at all. And if you don't rest appropriately, then guess what? It lasts longer

Ladies, we have to stop "powering through." The world isn't going to end if we're sick. (OK, this might be different if you're the President. Or, even, Secretary of State.) But that's two people in the world. Listen to your body, and give it what it needs! Let yourself heal! Don't put yourself--and others--at risk for being sick. Do the counter-cultural thing, and take care of yourself. 

It's not easy. I know that. I spent 23 years resisting this entire idea. "I can rest when I'm dead!" 

Well, if you don't take care of yourself, you're going to be doing that sooner rather than later. 

 

 

Amazing Grace

essays, transplantEmily DeArdoComment

Amazing grace.

That's really all that can be said about eleven extra years on the planet. 

That's more than 4,000 extra days. 

That's sort of staggering, if you think about it. 4,000 days. 

Extravagant grace. 

Extravagant gift

Some people, post-transplant, talk about bucket lists. About climbing Machu Picchu or going around the world and seeing the great sights. And I've done some traveling, post-transplant. I've done some things that I never thought I'd do, and met people I never thought I'd meet. 

But the most delightful things are the small things. 

Getting to see my godson graduate from high school. 

Holding a four year old on my lap during a fireworks display. 

Sharing root beer floats with friends. 

Deeply diving into God's life in me, deepening His life within me and my relationship with Him. 

Feeling the ocean waves wash over my bare feet. 

Of course, all of this is only possible because Suzanne was an organ donor. When she died 11 years ago, her family decided to honor her wishes and donate her organs. And since she died due to a brain aneurysm, her organs were in great shape. She saved a lot of lives that day, including mine. 

If you're not an organ donor, please be one. 
If you are, tell your family that you are one. 

Some people, when faced with health issues or other problems, wonder "why God has done this to them." And I've never thought that way. I'm not a saint. But I've never wondered why all of this happened to me. 

God gives everyone their cross--and it's a cross that fits them. This is the one that fits me.  My salvation only comes this way. And if I can drag a few more people to heaven with me, then that suits me just fine. :) 

I'm writing this in a coffee shop on a sunny summer day. It's a totally ordinary day in July. But it's a day that I never would've had, without Suzanne's generosity, and without the incredible skill and dedication of a whole team of medical people. 

Eleven years later, their skill, and their work, still live on.

I am so thankful for them. I'm thankful for Suzanne, of course, and her family. And even on the bad days, I am so thankful for every moment of ordinary joy. 

Amazing grace. 

The Fight for Joy

essays, health, transplantEmily DeArdo4 Comments

The tagline of this site is "Celebrating Ordinary Joy." And that's what I try to do on a daily basis--to remember that this life is so incredible, such a miracle, that everything is Joy. The brown bananas in the freezer awaiting their transformation into muffins; the roses and sunflowers in a vase on the counter; even the trash bags that need taken out. Everything is a gift. 

But that doesn't mean it's easy. I never wanted a Pollyanna tag line, where we play the glad game, and blithely ignore realities. Sometimes, reality is hard. 

Last week, I felt as low as I've ever been. I tried all my normal things--journaling, napping, bubble baths, talking to friends, a holy hour, a weekday Mass. When I go to Mass, no matter how crappy I might feel, usually the consecration floods me with peace. Not on Friday. On Friday I was totally just at Mass. I didn't feel a thing. It was like robot-me. 

I talked to my therapist (Most people, post-transplant, see a therapist. It's par for the course.) I basically didn't talk--I sort of fell apart. I was a mess. I wasn't sleeping, I wasn't eating right, I was forgetting conversations I'd had two days ago--and I don't do that--and I had no idea why. 

Joy was really far away. Incredibly far away. I thought about the tagline and I laughed. Joy? Really? JOY right now? 

No Joy. 

On Saturday, I was very gentle with myself. I read a book suggested by Elizabeth--The Awakening of Miss Prim--and I re-read the Restore workshop pieces. I went to Mass. I made dinner. I slept when I could. 

Today, I had a doctor's appointment. It was my normal clinic visit, but I was anxious because I didn't know what was going on with me. I wanted to find out. So I spilled out all my symptoms in a flood of words. 

The doctor and the nurse listened, and we figured out what it is. It's nothing major--it's just my body adapting to different drugs, and readjusting hormone levels and all those delightful things that happen when you're taking very powerful medicine. 

So my body has to readjust--and this will happen both physically and mentally. As it readjusts, things will go back to baseline. But until then, it's measures to fix the symptoms--sleeping when I can, getting good food and exercise, having the A/C set just about arctic. :) 

I'm so happy that I'm not crazy. 

But during those foggish days, days when joy seemed so far....it was hard to remember to look for the ordinary joy. 

But it's there. It's always there, even when I couldn't see it, or couldn't feel it. 

When it's elusive, hang on. Keep looking. Find that one thing. It's there. And that one thing can be a crack of light that you need to keep looking, keep seeing....what keeps faith. 

 

 

 

Sugarcoating Suicide: Me Before You (Or: Why you should not read this book or see this movie)

life issues, transplantEmily DeArdo27 Comments

I get really, really tired of defending my existence.

If it isn't people telling me that my transplant was immoral, it's people who think that assisted suicide for disabled people is a good idea, and a sign of love. 

Yes. Because, you know, nothing says I love you like KILLING YOU. 

Let's look at the cognitive dissonance, here: When someone--say, Robin Williams--commits suicide, social media is flooded with messages like, "suicide isn't the answer", "please get help-- don't be afraid of getting it", "I wish people knew that they could talk to me if they're ever feeling like this." Etcetera. You all know how this goes. People are sad, as they should be. People continually say that suicide is NOT a good option. And it's not. 

But: when it's a disabled person who kills himself, oh, well, that's love

And that's exactly what happens in the new movie Me Before You, based on the novel of the same name by JoJo Moyes. In it, a woman falls in love with a quadriplegic man she's taking care of--but, oh, he wants to kill himself. Because, you know, life in a wheelchair isn't worth living. And if she REALLY loved him, she'd go with him to Switzerland and be there when he kills himself. Because that's love: supporting you in all your bad choices! 

No. You know what love is? Love is what Mary Lenaburg and her family did for her daughter, Courtney. Love is what Kelly Mantoan and countless other parents do every day for their kids who need their help. Love is my mom washing my hair when I'm nineteen years old and her back hurts, or my dad staying up during countless ER runs with me, or my siblings learning how to reconstitute and push IV drugs. THAT is love. 

My life isn't perfect. Show me someone who says his life is perfect, and I'll say that this person is a liar. Did it suck, being twenty-three years old and not being able to brush my teeth without sitting down after? Does it suck now, when I have to ask people to repeat things because I don't always understand them, or when my CI malfunctions? Yeah. But I would never, ever say that that was worth being dead. Obviously, I like my life just fine, since I've been to the edge of death and come back from it five times. I must think that something is worth living for. 

When we start sugarcoating assisted suicide--like in The Sea Inside, Million Dollar Baby, and The English Patient--we are trying to make it morally acceptable. We're trying to tell people that suffering is bad and we should avoid it at all costs, even by killing people who are suffering. Guys. That's not love. That's not living boldly, as the movie's tagline execrably proclaims. 

Living boldly is living the way my friend Sage does, while she waits for a lung transplant.  It's what Andi's kids do every day, whether they're running crazily at a T-ball game or singing in show choir. Living boldly is embracing life in all its highs and lows and living anyway.  

I've had people tell me that they would've aborted me, if they'd been my mom. 

To my face, people. 

* * * 

In The Giver, a dystopian novel by Lois Lowry, Jonah, the main character, discovers that what everyone calls "release" is actually euthanasia. In his community, old people are killed, people who break the rules three times are killed, even one of a set of twins is killed. Babies that don't sleep through the night when they're a year old are killed. Why? Because they are inconvenient. Because they make life difficult for the community. Jonah can't live in a system like that, and runs away with Gabriel, a baby that is slated for "release." He risks his own life to save the baby's--because if you try to escape from the community and are caught, you are "released." 

The community's highest value is ease of life. No one experiences pain. No one, actually, experiences any emotions. People take a pill every day so that they don't have emotions. Parents don't have children--they are "given" children, who are born via artificial insemination. When Jonas asks his parents if they love him, they laugh at him and say it's a meaningless word. And thus, the community medicates away their humanity--and kills what is inconvenient. 

Yeah, it's a book--but are we that far off from that? Where do we stop? 

The abortion rate for Down Syndrome kids in the U.S. is 67% In Europe, it's 92%. We are killing babies because they are imperfect. Because they are inconvenient.  This Atlantic headline pretty much says it all--why on EARTH would you keep an imperfect baby? 

People sue for "wrongful birth"--saying that they wish their babies had never been born. Not all cases of CF are detectable in utero, because there are thousands of possible mutations. So if a kid with CF is born, and his parents don't like it, they sue. They can pretty it up all they want and say they need the money for the kid's care--but it's not about money. It's about having a kid who isn't perfect, and someone needs to pay for that. Someone made "a mistake."

Jesus had something to say about this: 

 

You know who made the "mistake", here? It was God. And no, it's not a mistake. God did all this for a purpose, and for a reason. My crazy genetic code exists to bring Glory to God. That's why I'm here.  

Suicide is not an answer for anyone, at any time. It's not romantic and it's not brave. In the case of assisted suicide, it's reprehensible. 

Life has value beyond its utility. We are not cogs in a machine. We are human beings created in the image and likeness of God. And to purposefully commit suicide is not brave. It's cowardly. It flies in the face of bravery. 

I'm not a hero. I'm not a saint. I screw up. But the answer to challenges isn't to give up. The answer is to live the best you can, in the circumstances you are in. Love is helping people find a way to live--not by helping them die. 

 

Yarn Along No. 45

books, health, yarn along, knittingEmily DeArdoComment

So, here we are, back to the Wednesday Yarn Along!

I'm on the second book of the Mitford series, and I'm really liking them. They remind me of Alexander McCall Smith's books--everyday happenings, people living lives in their small towns, but you can't stop reading about them and immersing yourself in their world. Mitford is the American version of the Gabarone or Edinburgh of McCall Smith's stories. 

IMG_3057.JPG

 

 (And yes....using up that washcloth yarn!) 

"Well, I'm Back"

transplantEmily DeArdoComment

the pertinent question then being from where, right? 

That breakfast tray should clue you in. :) 

For the first time in many moons, I spent a week at the resort, having things seen to. It's been since 2008, I think, that I've been in wth lung issues, and so I was totally over due, but it was a totally unexpected happening, as most things with me are. (Do I ever really expect anything when it comes to what my body does, anymore? Well, No. But.) 

Last week I had a col, which I really don't deign to write about, because everyone gets them, and even mine aren't all that interesting. I "finished" with the cold, meaning I was past needing cold meds, on Thursday, but I was steel feeling under the weather and was wondering if it was just really mean cold an I needed some more time to get things together, or if it was  a sort of virus that I really couldn't do anything about, other than ride it out. 

I had chosen the later and was re-watching Season Five of Downton at my place, thinking that I was definitely not going to be up for CCD the next morning. 

And somewhere around episode six, I noticed severe, brand-new chest pain--the sort that makes you think paying attention is a good idea. I sort of pondered for the next hour as the pain got worse, and then finally decided that the choices were calling my parents, or calling a squad, since I didn't think I was capable of driving myself anyway. Lady Edith and Marigold were just going to have to hang out in London for a bit. 

Describing pain is a difficult thing, but I refer you to this Magnificient Chart:. I have had pancreatitis eight times. That's a lot. It's very painful, sort of like knife-toothed gremlins eating away your abdominal muscles and drawing you tightly into a small ball of Awfulness.

This was worse than that. 

So that meant that we were going to have pain meds and, oh, Emily's heart rate was also around 135, when it should be about 90, since all I was doing was siting on a gurney while the end of Armageddon played out on TNT at the new Urgent Care Place (which was legitimately urgent. They had the goods, here.) 

The reason we went to New Urgent Care Place and Not The Resort (hereafter TR) is because I wasn't precisely sure what was happening and ought I'd should be somewhere, you know, close and emergency qualified, as opposed t0 12 miles down the road where the "emergency care" on Saturday night can be sort of scary. (TR does a good job. Won't say they don't. But sometimes you have to wait and when you feel like Death is at the Door, you are not feeling waiting, people.) 

So here we were, at NUCP, and they accessed my port (MIRACLE OF MIRACLES), and we did tests. We did a chest x-ray. We did a CT scan with contrast. We did lots of pain meds and I think we tried EKGs and stuff. My oxygen stauration, which should be somewhere between 95-100, was between 80-100, and supplemental oxygen was being called into use. So, yeah, stuff was Going Down that Wasn't What I Had Planned for My Weekend. 

(Some of the supplemental O2 stuff is from IV pain meds--it depresses respiration. It's a nasty cycle, it is.) 

 

So at some point it was decided that we'd transfer me to TR, which has all the lovely things I need, and I ended up there Sunday morning. My doctor popped in, and popped out, and other people popped in, and out, and we were sort of not getting the pain under control, which was making me unhappy, and was making my body unhappy, because it cannot stop freaking out if it is still in pain. 

I ended up on the transplant floor Sunday night. We played around with meds, but over all it was sort of a rough night, made rougher by a rough Monday morning, and by the time that by now, my heart rate and breathing had been labored and fast and not pleasant for 36 + hours. 

On top of all this, we were seeing things that looked like pneumonia on my chest x-rays, and I still couldn't take in a deep breath, which means I couldn't really do PFTs, which determine how well my lungs are functioning. However, I was made to do a crappy set, which basically indicated I was alive, but not much else. I was very lucky that I got to speak to the excellent resident, who decided we are going to get Pain Under Control (which we did, magically, without IV drugs yay!), and that there was a a lot of fluid sitting in my chest on the left side. We're going to get rid of that. 

Getting rid of that meant going down to see my Old Friends in Interventional Radiology (I do love them. When I say 'old friends', I mean it. They do good work.) A local anesthetic numbs the area an then a lot of gross, bright yellow fluid comes out. When I say a lot, we're talking liters. We're talking pounds, we're talking big amounts of fluid that should never been in your body, but yet is, and now is magically gone! A lot of it was whisked off for testing, to see what could be dwelling inside, but I was definitely a lot lighter. 

I had a lot of the textbook symptoms of pneumonia, including things I didn't think were textbook symptoms: dehydration, swollen throat, elevated heart rate, on top of things like chest pain, cough, and wheezing. 

I'd been doing IV antibiotics and steroids in case the problem turned out to be rejection (which it's not), and by the end of the week we'd gotten the pain under control, my HR was much more normal, I didn't need supplemental oxygen, and by Thursday my test results were already looking better, so that was a relief. Chest x-rays often take the longest to change, even after you feel better, so to already see changes was a big, positive sign, and my PFTs were rebounding (although that didn't really tell us much, in the long run, since the first set I'd done in house was so awful.) 

Yesterday I was thrown out--yay!--but I'll be back next Monday (not this coming on, the one after) for follow-up and not just from the hospitalization, but also to see how things are doing with the "generic" med I've just started. 

So I won't have much of an "update", I hope, until I'm back at much closer to baseline. Essentially, I've been reading, lusting after Emma Bridgewater's New Spring line, ,and I'm going to be playing with my watercolors and my Rosemary and Co. brushes (the brushes have arrived, and I almost have my palette filled!). 

New Rosemary and Co. brushes--a 2 and an 8. 

New Rosemary and Co. brushes--a 2 and an 8.