Transplant side effects: Skin Cancer

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. 

Reviewing the Situation

(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

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

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

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. 

Other transplant posts:

Starting the Ten Year Party

Catholics and Organ Donation

Sugarcoating suicide

The Fight for Joy

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)

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. 

Seven Quick Takes No. 107

I. 

So this week has been interesting from a medical perspective. Not terribly bad interesting, but Interesting, Capital "I". 

I have a port (an implantofix) implanted under my collarbone. I got this before transplant, so I've had it now for more than 11 years. A port is a place where, with a special needle, nurses and other Medical People can draw blood and give meds without having to hunt for a vein. Since my veins suck, my port has been a good and valiant friend for all these years. It means that when I need things--blood draws, fluids, meds--we know we're going to have access. 

Until Monday, when it decided not to. 

II.

Every month, the port has to be flushed with saline and heparin, to keep it from clotting. Since the port is placed in a big vein near my heart, this is important--we don't want any clots flying around and causing trouble, or clogging up the line. And for 11 years, it has worked splendidly. Sometimes we have to finesse the needle, but normally, we get blood return. 

(The "We" in this case, is me and mom. Mom does the port accessing. Yes, she's awesome like that. She wields Huber needles with aplomb, and she's better at it than a lot of nurses I've had.)

This time, no blood return. And I'd also had problems with it in the ER a few weeks ago....so I'm wondering....

III. 

Ports aren't permanent--the silicone cover that you actually poke can only take so many pokes. It's a few thousand. So I'm thinking it's died and gone to port heaven. 

But when we call clinic, oh, no! This might not be the case. Apparently there are many Magical Things we can do to see if the port just has a glitch. 

IV. 

So on Monday, we get to try the first of the Magical Things--a special drug that "sits" in the line and can remove any clots that might be at the tip of the line. The drug sits there for two hours. I sit in clinic for two hours. And then we see if we can draw it off the port and get blood return. 

If so--yay! If not--dye test! 

(I don't really know what the dye test entails.)

V. 

The benefit to this is that I'm going to get new books....so that's something, right? 

VI. 

In other news, though: SPRING!

And yes, that orange barrel also equals Spring in Ohio. 

VII. 

During the March Madness kick off yesterday I managed to wind two hanks of yarn and clean. And I have pink tulips!

Pretty Little Heads: Women, Health Care, and Anxiety

Why is there so much....anxiety?

--Former Clinton Cabinet Member Robert Reich

One of the things that always gets my goat in the health care setting is when doctors--usually male--ask this patient (a female) lots of questions about anxiety. 

Now, this is a legit question. I've been on anti-anxiety medication since I was about sixteen years old and I was diagnosed with a type of tuberculosis (TB). I would think that most 16 year olds, after having a near-death experience (and that's not an exaggeration--if we hadn't caught it when we did, I probably wouldn't have seen Christmas that year), would be a bit anxious. My doctor, who is Godlike in All Things, tactfully and gently suggested that perhaps I would feel better with some medication, and also a therapist. 

She was right on both counts. I love my therapist, and I've seen her since I was 16.Other than family and a few friends, that's the longest continuous relationship in my life. Not only is she extremely good at her job, but she's also a very nice person, and I have found her invaluable. 

So, it does make sense, when doing a differential diagnosis on me, to ask about anxiety. There's a history, there. I may be on a low dose of an anti-anxiety med, but I  am on one. I've tried to go off it a few times, but thus far it just hasn't worked. So I keep it, and life is better. 

But. 

(You knew that was coming, right?)

Sometimes, this note in my chart becomes something that doctors use as a crutch to dismiss my concerns. This isn't relegated to just doctors, and it isn't relegated to just men. A memorable incident was back in 2011, when I was on beta blockers in an attempt to stop my atrial flutter. It wasn't working, and my HR was doing its merry near 200 BPM dance. In the ER triage area, the nurse taking my vitals asked me if I was "nervous about anything." She asked the question like I was a very small, very silly girl-child that needed to be soothed and pacified. 

Trying very valiantly not to roll my eyes, I said, "I'm on beta-blockers. I physically cannot get nervous."

"Oh. OK!" 

 I have been asked this questions, repeatedly, many times over the years, in a tone of voice that suggests I am either: 1) not-too-bright, 2) five years old, or 3) both. This is insupportable. Yes, ask me if there's any stress triggers or anxiety-inducing events coming up. That's fine. But don't make it sound like you think it's the reason I'm here, and not because of any physical issues that might require your attention. 

Like I said, it's men who primarily do this, and I wonder--do they do this to other men? I can't imagine the condescending mask covering their faces, the simpering smiles, if they were talking to a 33 year old man. But they see me, and they see anxiety, and they go, oh, she's a little touched. 

This is especially true when it comes to pain. Guys. I know pain. I've had pancreatitis eight times. That's generally considered to be really painful. I've had collapsed lungs (although the Queen of Collapsed Lung heroism is my friend Sage, who has had chest tubes put in without sedation--a feat I cannot even imagine. She is the Toughest Person I Know, Bar None.) I have basically been cut in half and put back together! 

I don't write this to be all I AM AWESOME, but to show you that I know what pain is. When I say my pain is a seven or higher, it's legit. It's not Tylenol pain. IT IS PAIN. I'm not making it up. It's not in my head. My pain is real, and it deserves to be treated as such. 

This last time, this was a consideration. Pain halts healing. After transplant, a certain amount of pain is expected, but if it's too much, you can't get better. That's not good. It has to be managed appropriately. There's a reason there's a whole branch of medicine devoted to pain care! I had a doctor tell me that pain isn't something that happens with pneumonia. (Read: It's in my head!)

It's not? Actually, it is. Google it, people. 

Just because I am a girl, and I am on anti-anxiety meds, does not mean I am "drug seeking." It doesn't mean that it's in my head. I have a very good imagination, but come on. Pain is real. Pain is a symptom of a problem. It deserves to be treated, not just brushed off. There are many ways to treat pain, but the point is to treat it. 

This is where my psychologist rises above the rest. Not only does she treat CF and post-transplant folk, but she also does a lot of work with people with sickle cell trait, which is exceedingly painful (so I'm told. I don't know, although I do have thalessimia, which is sort of related to sickle cell disease as a genetic level). She--and her other patients--deal with this all the time. Over the years we've done lots of non-med relaxation techniques--tapes, visualization, even hypnosis once (that didn't work. I threw up all over myself.) We've tried bio-feedback, yoga (which does work, for some things), and other methods. It's very all -inclusive. But sometimes--we need the medication. 

What I do not need to be told is that it's in my head. 

"Well, I'm Back"

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. 

Happy New Year! Love, The Insurance Company

I generally like the new year. What I don't like is when it's an occasion for my insurance companies to hose me. 

Before you think this is a "I hate insurance companies, I want socialized medicine!" rant, it's not. I'm a conservative, generally. I do think that health care needed reformed, because I think it's silly that people like me could only get insurance if we were working. That's really silly, guys, because sometimes we can't work and we need insurance. 

Anyway. 

This year, my insurance company has decided that they aren't going to cover one of my immunosuppression drugs anymore. Yeah. You read that correctly. One of the two main drugs that keeps me alive on a general basis--we're not going to pay for that anymore. A nice, bright red "we're sorry" is all I see on the insurance company page when I go to check on this. They don't tell me this is going to be a problem ahead of time--not until I try to get a new prescription. 

"yeah, they don't cover that anymore, so $1,000, please. Per month." 

Each pill is basically $33. $1,000 a month is more than I make all month. 

I'm not complaining about the cost, so much. I know why these drugs are so expensive. A small percentage of the population uses them, and these drugs are hard to produce. I am grateful they exist. But that's something the company should have maybe warned me about well ahead of time, so I would've have time to talk to my doctors, try another med, and then do what I needed to do to keep my immunosuppression regimen at optimal levels. 

So now, I'm going to switch to a generic brand, that may or may not work. The generic version of Prograf (the other immunosuppression med I take) doesn't work for me. How do we find out if these drugs are at a therapeutic level? Blood tests. 

So, I'm going to be getting more blood tests--oh joy, oh rapture, me of the crappy veins--and I'm also going to be at the hospital more often to get this done. All of which the insurance company will be billed for. 

If it works, great--we pay $100 a month, instead of $1000. If it doesn't, then I have to switch back to the "real" med, and apply for financial aid from the drug company, which I'll get, because my paycheck is "a disgrace to paychecks", to quote from The Family Man.

Thanks, dear insurance company, for giving me so much advance notice that one of the drugs I take to stay alive isn't covered anymore. I'm so glad that you care about your subscribers and their health. 

(Not.) 

{P,F,H,R} 4--Fall is here!

Linking up with Like Mother, Like Daughter!

Pretty

The pumpkin display outside one of the local Whole Foods stores. How many pies do you think we'd get out of all these? I also love the little basket of squash. 

I really love fall. I'm not a huge pumpkin fan, though, but these were just so pretty, all arranged together outside the store on a lovely First Day of Fall! 

Funny

Guys, this is just SO funny, and since I'm distantly related to Cardinal Wuerl, I can use this for my funny, right? I geek out whenever a pope comes to D.C. now because it's total Distant Cousin Mania time!

Happy

This is our CCD classroom door this year. Sr. Paulina, who came to the US from Poland a few months ago, has been helping in our class (partially to help improve her English), and she is greatly gifted with a laminator and some construction paper! I love what she did to our door. 

(I don't know why the little guy looks so oddly squished--but take my word for it, he doesn't look like that!)

This is one of my few fall decorations. While my mom is the Queen of All Household Decorating Things--you should see the house at Christmas!--I don't have as many decorations. I did, however, pick this guy up at Hallmark as part of their 12 months of ornaments series, along with this guy: 

See the little kitty? And I have my Seasonal Angel, too, who's out in her full glory. 

The next ornament in the series is a Turkey--they're all designed to look like cupcakes. The first one, for August, was a crab on sand, which was adorable. 

Real

This is part of the Radiology Department at "The Resort"--aka, my hospital. Since the new addition was built, there is a fancy new "imaging" department, which has taken over most of the traffic that used to come here, when this was Main Radiology for clinics, the ER, inpatients, you name it. I have spent a lot of time in these hallways--sometimes in a bed, sometimes in a wheelchair, sometimes under my own power. After transplant, I came down here every morning around 6 AM for a chest x-ray. It was hard to walk back then--I needed breaks. Can you imagine needing breaks to walk a few feet? It's sort of unbelievable now. 

The only things down here anymore are the regular radiology rooms, and the bone density scanner. The CT scans and nuclear medicine have been moved to the new digs. But this part of the hospital is still a part of my life, because this is where I go for my chest x-rays now before my transplant clinic appointments. 

So I'm probably never going to escape these walls, or that tile pattern--but at least when I'm down here now, it's not an emergency. It's routine. 

Making the Country Accessible: Thoughts on the Americans With Disability Act

President George H.W. Bush signs the Americans with Disabilities Act in 1990. 

Although I don't generally call myself this, I'm a disabled American. (And no, I don't use a wheelchair.) The Americans with Disabilities Act (ADA) made my life a lot easier before transplant--but post-transplant, I see a lot of places where it needs some work.  The Act is 25 years old, so it's a good time to think about this. 

I'm inspired to write about this because most people, when they think about the ADA, think about people who are mobility-impaired--mostly, people in wheelchairs, or who use crutches or canes, or people who are blind. But let's think about people who are Deaf or hard-of-hearing, and people who have respiratory or heart problems. Let's broaden our scope. 

Pre-transplant, I used a handicapped placard for my car. I came upon it rightfully, because the amount of distances I could walk, especially after my stint in the ICU my sophomore year of college, was very limited. Walking around my college campus could be difficult, especially with my backpack full of books. But if you looked at me, I didn't "look" handicapped. I looked fine. I also had about 20-25% lung function. 

Lesson 1: Don't judge someone's handicapped status by the way they look. 

I was very grateful for elevators in my lecture halls, and in other places. There was no way I was going to be climbing lots of stairs (just ask my friend Chris, who had to carry me up the last few flights of the Empire State Building when we visited NYC during Christmas break our senior year. Yeah. Let's all be glad I only weighed about 95 pounds at that time.). My high school also had an elevator--which I never used, but it was good that it was there for students who broke legs or ankles. My elementary school wasn't accessible at all, and students who couldn't go up and down stairs had to be carried by their parents to their classrooms. Not great. 

Even post-transplant, I still used my placard. When I went back to work four months post-transplant, I was still working only half days. I still looked sort of sick--my skin was very pale, I was extremely thin, and my hair hadn't developed the healthy sheen it has now. If you cared to look at me closely, you'd have noticed that I was either sick with something, or recovering from something. Since I worked at the Statehouse, we had Highway Patrol officers that provided security for us, including patrolling the garage. I never paid them much attention to them until one stopped me as I went to my car, shortly after I had returned to work.

"Is this your car?" 

"Yes."

"Why is it parked in a handicapped spot? Are you handicapped?" The tone in the officer's voice indicated that he didn't think I was.

"I just had a double lung transplant."

There are few things more satisfying than watching people realize they've just had a major Foot in Mouth Moment. 

Now, I don't have one anymore. Now I walk across the parking lot with all the rest of you. But let's please remember that there are many invisible disabilities. Arthritis? Check. CF? Check. Autoimmune disease in general? Check. Epilepsy? Check. Diabetes? Check. Etc. 

(also, little side note: CF can cause arthritis. Yeah. That's a fun little holiday treat, as they say in Family Man. One of my friends has terrible CF related arthritis. Mine was not as bad as hers, and there were still days when my joints were so tender and so painful that the thought of putting any pressure on them--the though of even standing--was out of the question.) 

Let's talk about my life now. 

I have a cochlear implant.[ It is only by sheer dumb luck, or God prompting, that I took two years of American Sign Language in high school. I can use it if I have to. Normally, I don't. But I can.] There are so few accommodations for Deaf and hard-of-hearing people! 

Marcus Theatres is the only cinema chain around here--and I live in one of the largest cities in the U.S.--that provides captioning for every movie it shows. AMC doesn't (AMC is our other big local chain). When I want to see a movie, it has to be at the local theater, and if it's not showing there, I can't go, because I won't understand it. Apparently, AMC doesn't think that Deaf people or people like me might like movies. 

The system I use at Marcus is called Captiview. Marcus has about five of these systems and all I have to do is ask for one at the box office. It's easy to use and it's not distracting to others. They can't see the light from the captions (My friends and family have tried to read the captions when we're at the movies, and it's only if I turn it to face them that they can). Sure, it's a bit unwieldily to carry around in the multiplex, but it works. I love movies, and now I can go out and watch them in the cinema like everyone else. I get to see movies, movie theaters get my money! Yay! But if all movie theaters provided captioning, I could see a broader range of movies--and I'm lucky that the theater that is closest to me provides this service. And they're not a nationwide chain. They're Midwest-based and only in states like Ohio, Wisconsin, Illinois, and Indiana. So if you live somewhere else, then I hope your local theater has something similar, or you're out of luck. 

Some cable channels aren't captioned. YouTube videos, or online videos? No captions except "automatic" ones, which are about as useful as captions in Swahili to me. Warner Brothers, especially, incurs my wrath, because they do (Pardon my French, here) half-assed captioning. When I watch The Wizard of Oz and the captioning automatically comes on, it doesn't translate word-for-word. It gives a summary of what the character is saying. 

Lesson 2: Deaf and Hard of Hearing People Like TV and Movies. Please caption things for us--COMPLETELY! 

Seriously--the next time you watch anything from Warner Brothers, turn on the captioning, and you'll see what I mean. I know they're leaving words out, because I can hear the dialogue. (Not understand all the dialogue. There's a difference.) 

Some DVDs don't even have functioning captions. What is that about, guys?

Captioning like this isn't covered by the ADA. The only thing that must be captioned are channels that receive federal funding. Well, thanks. 

Normally, I'm a small government person. But this is ridiculous. Provide a basic service that is inexpensive (see the Captiview site I linked to--that's one of the selling points for their technology), easy to use, and not at all inconvenient to other patrons. 

Another area that needs work? The phone. People, not everyone who is Deaf or hard of hearing has a TTY. I don't have one. I don't know how to work one. But if a website provides chat services, I'm fine. We can communicate just great. I use email most of the time because if you call and talk to me, you will sound like Charlie Brown's teacher, unless I know your voice really well. (Meaning, you're my parent. And even then....)

AAA, for example: when I got a flat tire a few years back, I couldn't call them. I had to text my Dad to have HIM call them to come help me. It was ridiculous. Can't we come up with an app that will allow texting to contact services? This is the 21st century. We have apps for everything. Or not even an app--a number that could be reached via text message. 

This is especially true in health care. Oh my gosh. When I have a call with a case manager, my mom or dad has to sit and translate for me, because the case manager can't email me. It HAS TO BE over the phone. What? What sort of sense does that make? If you don't want to email, then set up a chat window on a website, like my bank has, or like many shopping sites have. If Bobbi Brown Cosmetics and the Disney Store can have a chat interface, then medical and insurance companies can, too.  Don't they ever think they might be working with a person who has a hearing disability? 

The law did a lot of good things, but there are plenty of things that still need work, especially in the realm of hearing, as I hope I've shown you. 

Tomorrow I'm going to write about accommodation in a place where you'd think it should be second nature--churches. 

Daybook No. 97

(it's back!)

Outside my window::

Sunny through thin white clouds. It's not going to be very warm today--well, warm for June--so swimming is probably out, but that's OK!

Wearing::

Jeans, a bright blue v-neck t-shirt, and flats.

Reading::

Working on Northanger Abbey. I finished Prodigal Summer yesterday, and man, I wish Barbara Kingsolver would write a sequel. It's that kind of novel where you want to stay with the characters for a long time, even after the book is finished. I'm reading The One Thing is Three for my spiritual reading. The rest of the fiction pile includes The Forsyte Saga and A God In Ruins, and then I've got What Matters In Jane Austen and Jane Austen's England. So a variety of things on the reading pile!

In the CD player::

The Light in the Piazza, celebrating Kelli O'Hara's Tony win.

Writing::

This week I'm doing something different with LA--I'm going back to doing the link-ups/weekly features that I've sort of been neglecting amidst the new writing plan. So tomorrow is the Yarn Along, Thursday I'm talking about Sketchbook Skool, and then Friday we'll have Quick Takes. I'm also going to get some things pre-written because I'll be in Pittsburgh until Tuesday.

The Dominican section of the memoir continues apace. It's sort of a complex section to write but the goal here is to get it down into a physical form on "paper" (or, in a Pages document). Then I can revise it. I'm hoping to have the section done by the end of the month so that in July, when I'm back from Charleston, I can start sending out queries and book proposals. (EEEEEK)

Creativity::

You'll have to come back tomorrow and Thursday to read about that. :) But really, it's been really interesting in this area lately.

Health stuff::

So yesterday was my Annual Clinic Day of Testing for Transplant Guys. :) Basically, all the yearly tests we do, I did yesterday. That involved lots of blood-letting, full PFTs (Pulmonary Function Tests--"full" meaning more than just the basic test I do every visit. We checked gas diffusions in my lungs and some other fun things), a CT scan of my lungs, bone density scan, and an abdominal ultrasound, which looks at my spleen, liver, kidneys, all that sort of stuff.

I lost five pounds "officially" in clinic (I told the dietician that I had lost 10 lbs at one point, but the loss doesn't want to stay there, sadly), and the PFTs went up four points. So win to that correlation. Everyone's happy with that. I haven't gotten the results back yet from the other tests. (Other than things like my regular chest X-ray, which looked fine and dandy--we saw that in clinic.)

Today I'm going to see my ENT so he can check out my sinuses. I see him about every six months, and about every two years, we do the sinus surgery. This is because even though my lungs don't have CF, the rest of my body does, so we still have to keep the sinuses happy. They tend to fill with the CF-quality mucus and that can be a huge breeding ground for infection. Fortunately, I don't have nearly as many sinus issues as some other CF folks I know.

Pondering::

I normally don't talk to many--if any--other patients when I'm at Children's. Part of that is because I don't really talk in waiting rooms, at all, and partially because a lot of the time, I'm alone. In clinic, I'm in my own room, and in radiology, the transplant/cancer patients sit in the radiology hallway itself, not in the general waiting room, because of concerns about sick people.

I'm really familiar with the radiology hallway. It used to be main radiology for the entire hospital, so I've come here as an ER patient, as a CF outpatient, and in the days after transplant, at 6 AM, before the hospital was really "up", so I the chances of me running into a sick person (or anyone else) were really slim. I know all the radiology techs really well, and know some of them by name.

There are three chairs set up outside the main waiting room door for transplant/oncology patients. Sometimes it's me and other transplant patients who are being seen that day (we all have the same routine--blood work, x-rays, clinic), but mostly it's just me.

Yesterday there was a small family: a boy, a girl, and the mother. The kids looked to be in high school. I knew the boy was a transplant patient because 1) he was wearing a Dash for Donation shirt (it's the annual Lifeline of Ohio race), and 2) he had a mask on. Most of us wear masks in the hospital. I hate wearing them so I generally don't. (yeah, I'm a rebel.)

But the boy looked so sick. I couldn't tell if he was pre or post-transplant. He was so thin I could see the ligaments in his legs around his knees, the tendons popping out. His shirt hung on his, and he was in a wheelchair. He didn't really look anywhere, other than vaguely at his lap. His sister was plugging away at Facebook on her phone, but he just sat there, vaguely thinking about something.

I knew that look. I'd been there. It's the look of not really having the brain power to do anything else but tend to the function of your body. Breathe, sit up. Breathe.

He went back for X-rays, and I talked briefly to his sister--small things, about the waiting area, her sparkly phone cover. Her brother came back quickly and they were gone, heading up to clinic.

The radiology technician called me to a room. "He's rejecting," she told me.

"How far out is he?"

"Five years."

Ah, five years. Five is a magical number. About half make it to five years--it's a little less than that, for girls. UNOS (United Network for Organ Sharing) doesn't even have 10 year stats on their website, yet, for lung transplant patients. At hitting 10 years, I'm sort of a statistical anomaly. Five years is becoming more common, but 10 is still out there, and the people I know who are 15+ years have had two transplants.

I am extremely, extremely lucky. And it could all change, but right now, the fact that I'm this far out, and that I'll be celebrating my 10 year mark in a month, is incredibly fortunate. I am incredibly fortunate.

Plans for the Week::

I have a Summa Theologica class at church on Wednesday--this just started last week--which means I have to read Question 2 of Part 1 today so I'm ready to talk about it tomorrow. :) On Friday I have another doctor appointment and then I leave for Pittsburgh on Saturday!

(note: that lovely photo of bluebells? Elizabeth Foss took that. :) I hope she doesn't mind that I borrowed it from her website! It's just so gorgeous.)

Seven Quick Takes No. 78

I.

mmmm. Summer Friday. Those are beautiful words in the English language, no? :)

II.

Since it's summer, more people read. You can, of course, join the Jane Re-Read (Sense and Sensibility is what we're talking right now). I'm still reading Prodigal Summer and Northanger Abbey. I just finished I Believe In Love, about St. Therese of Liseux and how she can lead us to a deeper spiritual life, and I really liked that one. There's a lot to ponder and I'll definitely be reading it again. (Who am I kidding. I read everything again....unless it's Moby Dick or Portrait of the Artist as a Young Man. Shudder!)

I keep debating if I should read Girl on a Train. Yes? No? Thoughts?

III.

My 10 year transplant testing appointment is on Monday. To put this in perspective: UNOS (the United Network for Organ Sharing, which "does" transplants in the U.S.) doesn't even have 10 year survival rates on their chart. The last one they have is 5 years out, and for women, that rate is 46.1%. I read somewhere that 10 year survival is around 30%, but I forget where. So, for ONCE, the odds have been playing nicely with me. I rejoice in this. The actual 10 year date is in July, but we do the testing in June, usually.

IV.

I've discovered that a lot of women don't know basic maintenance things. This sort of scares me, ladies. You should know to put gas in the car (and what kind of gas), how to jump a car battery, how to use tools, how to unclog a toilet. Even if you're married, your husband isn't aways around to fix things! I'm amazed at how many women I know who can't do any of these things and I want to be like, girls. Come on now!

V.

My brother's girlfriend sent me this photo of him at Disneyland, and I just love it:

As Br. H said, "How many Evil Empires can you fit in one picture?"

VI.

I've started swimming again--yay! But man, the muscles feel it when you swim hard for the first time in a season. They rebel the next day. But it's so good to be in swim season again, I do not mind at all.

VII.

Almost time for Edel 2015 in Charleston! I'm so excited!! I've never been to South Carolina and I can't wait to meet all the amazing women who will be there!