Scotland

Scotland was an amazing experience and once I’m over jet lag I will have so much to tell you but I’ll give you some teaser photos first!

One Year of Peloton

You might remember that are my yearly appointment in 2022, my team told me that I had to—definitely—start an exercise program.

Up until that point, I’d never really had one. I’d done some things sporadically, I’d done a 5K the year after my transplant, and I’d gone to barre, ballet, and yoga classes on and off. But I’d never really had a set program that I did consistently.

Now it was time to get one.

Today I’m going to walk you through my program, do some before and afters, and talk about general fitness-y things.

The first thing I did was sign up for the Peloton app. Two things, right off the bat:

• This post is in no way sponsored by Peloton. It’s what works for me so I’m talking about it, but I don’t get paid to say any of this.

• I do not have any of the Peloton equipment (the bike, the tread, the row). I use the app exclusively, and use the treadmill in my complex gym for my walks.

The “super goal” as it’s called in the goal setting world, is to be working out every day for 30 minutes, with one rest day (Sunday) per week.

I was starting at zero, so this goal is still in progress. I am working out almost every day, but not for 30 minutes, generally.

As I’ve talked about before, my body is weird. I have about 54% lung function, which is good for me, but it’s half of a normal person’s. I have a wonky right knee and right Achilles’ tendon, as well as tight hamstrings. I say this to lay out what I am dealing with and how my routine has helped me here.

So, all that aside, here’s how it goes:

I break my workouts down into several areas: cardio (swimming, yoga, walks), strength, stretching and mobility, and I use the peloton meditation classes. (I don’t meditate, per se. I use these to help with stress and relaxation before bed, because keeping stress low/manageable is a big part of keeping blood glucose levels in check.)

For cardio: I do the treadmill walks on the app—usually 20 minutes, but sometimes 15 if my day is packed and I need to get a workout in. I have done one 30 minute session so far.

When I first started—being totally honest here—I could barely hit 1.0 on the treadmill. Now I’m at 2. (On my treadmill. The app says I’m going about 2.5 on my speed, but speed varies on treadmills).

When I first started, I couldn’t follow any instructor cues (to go faster or to increase incline). Now, I do follow them (within reason—I’m not ready for 6 or 8% incline—yet), and I like them. The app also offers hikes, which I’m going to try for the first time this week! The highest incline I’ve hit so far is 4%.

I also swim in the complex pool, which is a little harder to do regularly, because I have to have room to swim, and in a shared pool, that can be hard to do. I don’t swim fast enough to feel comfortable at a Y or JCC pool doing laps. As you can see above I’ve started tracking my swims with my Apple Watch. I’m hoping the pool will be open for a few more weeks so I can get in more sessions, because swimming really is my favorite cardio. (It’s generally open May-September.)

I count yoga as cardio; I know some people don’t, but when you have the lung function I have, even slow flow classes count for getting the heart rate up. I’m trying to be more consistent here after doing a week long yoga program on the app earlier this summer. There are a wide variety of classes. I almost always do a restorative yoga class once a week because these are great for opening up my chest (very important in the pulmonary world), releasing tight areas, and also reducing stress. (There is actual science that backs up how yoga can help lots of health conditions, CF being one of them; check out the book Yoga as Medicine* for more on this.) Obviously restorative yoga is not cardio, but my body really likes it.

A look at the yoga classes I’ve taken.

For strength, I do the 10 minute arms and light weights on the app. For these you use 1-3 pound weights, with the objective being lower weights but higher reps. I’m currently using the 2 pound weights and I might be ready for the threes, so that’s a huge improvement from the no weights I used when I first started. I love these classes. I’ve dropped a shirt size since I’ve started doing these.

For leg and core exercises (which are also works in all the other things I do) I do things like wall sits, plies, pelvic tilts, etc.

Stretching and mobility is also really important to me. I always do a lower body stretch after a treadmill session and I stretch out my arms after weights. Sometimes I do a really focused 10 or 20 minute stretch like you see above with the “hip mobility”. My legs get very cranky if they do not get stretched out regularly.

Here’s what this looks like in a normal week:

Monday: Restorative Yoga

Tuesday: 10 minute arms and light weights

Wednesday: Treadmill session with stretch after

Thursday: 10 minute arms and light weights

Friday: Treadmill session, restorative yoga.

Saturday: 10 minute arms and light weights.

Stretching and swims are added in as possible.

I want to add in more dedicated yoga classes, possibly on T or Th, and I also want to experiment with some other strength classes on the app.

I am much stronger and fitter than I was a year ago, an I can’t wait to see what gains I can accomplish in the next year!

Yearly Transplant Appointment Recap!

A little petit déjeuner after the first part of the day!

The Yearly Transplant Appointment Day is a LONG day, so it’s always a good idea to have some treats sprinkled in. :)

The first part of the day is testing, and the second is my doctor appointment. The first part looks like this:

—CT scan, just to see how things are going inside.

—Pulmonary Function Tests (PFTs). I do “regular” PFTs, called spirometry, every three months. These measure my lung capacity, among other things. But annually we do what’s called “full” PFTs, which means there are two other tests added on to spirometry.

—A six minute walk; this test measures stamina and how your pulse and oxygen saturation do while being active. You pick your own speed and walk along a pre-set track (usually a hallway) for six minutes.

—Blood work (also done every month).

So after the first part was done, Dad and I (dad is a good sport who came with me) had a little French snack before a trip to the yarn store for therapeutic yarn shopping, and lunch at 11:30 at a local restaurant.

Dad’s very cute strawberry basil lemonade at lunch.

Finally we headed over to the hospital, where my appointment is, and waited…and waited….and waited….

BUT I was finally seen. Doctor is pleased with all things!

My PFTs went up four points which is really amazing, because my PFTs don’t generally go up—go my workout program, go (more on this in the next post) ! My six minute walk results were also right smack in the normal range. There’s a “low normal” and a “high normal” and I was right in the middle, which is great (this is for everyone, by the way—it’s not a special transplant range. It’s normal person range.). Labs also look very normal.

So all in all, a good appointment with good results! Yay!

July In The Garden

July in the garden was when I saw my tomatoes really get ripe! I had (barely) enough to make one of my favorite summer pasta salads (with some tweaks. I use fresh cherry or grape tomatoes, and lots of fresh basil, and no olives). The tomatoes have been so good—amazingly sweet and perfect.

Right now the tomatoes are struggling a bit. We’ve had a lot of rain and also my apartment complex (for some reason) has decided to turn on the sprinklers, so my tomatoes are getting lots more water than they need and that’s causing some problems. But I have four little green tomatoes on the vines right now, so I’ll get at least a few more this season.

The basil has done well, the mint has been OK—sort of straggly so I have to prune it back a fair bit. I had to really prune back the lavender, which did not do well with all the rain at all, but maybe it’ll revive with the pruning I’ve done. Growing lavender in a pot here is always a hit or miss proposition. It’s warm enough here for it to do well but it doesn’t like a lot of rain.

Next year I definitely want to get two tomato plants, two basil plants (two plants in one big pot), and possibly get a bigger pot for both the lavender and the mint, so they have more room to spread out. Growing the tomatoes has been really fun for me and I think with two plants I’ll get a more usable harvest, instead of having to wait to have barely enough for a meal. (Although don’t get me wrong, I love just eating them fresh off the vine!)

If you have good tips for storing/freezing/drying basil, please let me know. I don’t really like pesto so making it isn’t an option for me.

Yarn Along: The Summer of I-Cord

This summer I have been diving into the fabulous world of knitting I-cords.

What is an I-cord, you may ask? It’s the border and loop you see in the mini washcloths above (knit during Modern Daily Knitting Summer Camp, which was all about dishcloths that use I-cords!). They are delightful and pretty and sometimes functional, as we see here!

The I-Cord obsession began with the Sophie Scarf and Sophie Shawl—if you knit, you need to knit these patterns because they are truly delightful and adaptable. These projects use applied I-cord for the pretty edging. All this means is that you slip two stitches with the yarn in front at the end of every row, and voila! I-Cord!

The large Sophie shawl n Quince and Co. Phoebe—colorway Orion.

I’ve made three Sophie scarves (one as a gift, two for me), and one shawl. They make fabulous gifts!

Using La Bien Aimee’s merino boucle

I-Cord is also used in Andrea Mowry’s Everyday Cowl—both for edging and bind-off. I-cord bind off is sort of the equivalent of one step forward, two steps back, but it does look nice and tidy.

Close up of the I-cord bind off.

Then I decided to get really crazy, and learn how to do two color I-cord bind off for Andrea Mowry’s The Shift cowl!

This wasn’t in my plans. I’ve been trying to work down my Ravelry queue of patterns and use up stash, which is what happened with both the Sophie Scarf above and the Everyday Cowl. But when I saw that Andrea had designed this pattern for the Edinburgh yarn festival, and since I’m going to Edinburgh in September, and all the colors she used were named after places in Edinburgh, I not only had to make this, but I had to use the original colors. (They’re the bottom three colors here.)

From the bottom: The Meadows, Leith, and The Castle.

I also learned mosaic knitting with this project (Mosaic knitting is basically slipping stitches in various patterns.)

While on the needles. Check those gorgeous colors!

This is about to go in the bath and be blocked, then seamed, to create the finished object. Keep your eyes peeled for an update!

And then finally, I learned to knit a single I-cord during the Modern Daily Knitting (MDK) Summer Camp held last Friday. This was pretty amazing; if you’ve never taken a class with them, I highly recommend it! Lorilee Beltman taught us all sorts of tricks using her Sinkmates Suite dishcloths, which use I-cord and various stitch techniques to create beautiful dishcloths. I generally hate working with cotton yarn, but the Rowan Handknit Cotton we used for this class is great!

I’m addicted, I’m just going to admit it. So far I’ve knit one basic, one striped, and I’m about to start a mosaic one. The other great thing about these patterns is that they help me master a technique that’s stifled me—picking up stitches from a cast-off edge. I’m really bad at this! But I get lots of practice while I knit these dishcloths, and this will definitely come in handy for future projects, especially cardigans that have a shawl collar!

In the non I-cor world, I’m also working on a blanket for a friend’s little boy, and there’s another MDK online class coming up in August where I’ll be knitting a cowl that looks scrumptious.

Have you ever fallen in love with a certain type of technique, recipe, or music, and then just couldn’t stop doing it? :) Tell me about it!

ICYMI: Signed book sale!

In case you missed it here, my annual anniversary signed book sale is on!

For $15, you get: a signed copy of my book, Living Memento Mori; a specially created bookmark and prayer card, and free shipping! (Normally this package is $20.)

To order, email me with your address (or the address of the recipient, if it’s a gift) and I’ll send you a PayPal invoice from there! (We can also figure out other ways to pay if you’re not on PayPal).

The sale runs through July 20.

Eighteen

This is a photo of me and my godson, Ryan. (He’s also my cousin.)

I was fifteen when he was born. When I received my transplant, he was seven years old.

I loved him insanely. I kept his photos in my locker, and my friend Amilia remembers that we used to call him “baby.” (I still love him insanely, don’t get me wrong. The insanity of love does’t wane.)

He’s 25 now. He works in Pittsburgh and has a degree in economics. He’s learning Japanese.

When I was on the list, when I thought I might not get to see him grow up, one of the things I wrote during that time was a letter to him—things I wanted him to know.

Fortunately he never received that letter, because I did get to see him grow up. I saw him lose teeth, make his first communion, heard his voice break and his body shoot up in height, and I went to his high school graduation party and I know him as an adult.

Patty is three years old. When I had my transplant, her mother (my cousin) wasn’t even married. Neither were my siblings.

My nieces—sweet Madeleine and Hailey—weren’t even possibilities at that point.

Melanie and Madeleine (aka, Maddie, Baby Bear, Sweetheart, Baby Maddie….)

Bryan and Hailey (aka, Hails, Hailey Bug, Baby Bear, Munchkin, Baby Girl…)

Cheering on her favorite baseball player with Mommy!

There are so many gifts. So many things I didn’t even think of when I was twenty-three.

So many things I would have missed.

For some reason, I didn’t miss them. I got to experience them.

“I am, among all men, most richly blessed.”

---

Please consider becoming an organ donor, so that more families like mine can be blessed.

Also, my annual signed book sale is on! Get a signed copy of my book, a specially designed bookmark and prayer card, and free shipping, for $15! Email me with your address.

"When in the course of human events..."

If you’ve never read the Declaration of Independence, I highly recommend you do so—perhaps today, on the “Glorious Fourth”?

I’ve even pasted it all here for you! :) (And at the end, a clip from 1776—the final vote.)

In Congress, July 4, 1776

The unanimous Declaration of the thirteen united States of America, When in the Course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the Laws of Nature and of Nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.--That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed, --That whenever any Form of Government becomes destructive of these ends, it is the Right of the People to alter or to abolish it, and to institute new Government, laying its foundation on such principles and organizing its powers in such form, as to them shall seem most likely to effect their Safety and Happiness. Prudence, indeed, will dictate that Governments long established should not be changed for light and transient causes; and accordingly all experience hath shewn, that mankind are more disposed to suffer, while evils are sufferable, than to right themselves by abolishing the forms to which they are accustomed. But when a long train of abuses and usurpations, pursuing invariably the same Object evinces a design to reduce them under absolute Despotism, it is their right, it is their duty, to throw off such Government, and to provide new Guards for their future security.--Such has been the patient sufferance of these Colonies; and such is now the necessity which constrains them to alter their former Systems of Government. The history of the present King of Great Britain is a history of repeated injuries and usurpations, all having in direct object the establishment of an absolute Tyranny over these States. To prove this, let Facts be submitted to a candid world.

He has refused his Assent to Laws, the most wholesome and necessary for the public good.

He has forbidden his Governors to pass Laws of immediate and pressing importance, unless suspended in their operation till his Assent should be obtained; and when so suspended, he has utterly neglected to attend to them.

He has refused to pass other Laws for the accommodation of large districts of people, unless those people would relinquish the right of Representation in the Legislature, a right inestimable to them and formidable to tyrants only.

He has called together legislative bodies at places unusual, uncomfortable, and distant from the depository of their public Records, for the sole purpose of fatiguing them into compliance with his measures.

He has dissolved Representative Houses repeatedly, for opposing with manly firmness his invasions on the rights of the people.

He has refused for a long time, after such dissolutions, to cause others to be elected; whereby the Legislative powers, incapable of Annihilation, have returned to the People at large for their exercise; the State remaining in the mean time exposed to all the dangers of invasion from without, and convulsions within.

He has endeavoured to prevent the population of these States; for that purpose obstructing the Laws for Naturalization of Foreigners; refusing to pass others to encourage their migrations hither, and raising the conditions of new Appropriations of Lands.

He has obstructed the Administration of Justice, by refusing his Assent to Laws for establishing Judiciary powers.

He has made Judges dependent on his Will alone, for the tenure of their offices, and the amount and payment of their salaries.

He has erected a multitude of New Offices, and sent hither swarms of Officers to harrass our people, and eat out their substance.

He has kept among us, in times of peace, Standing Armies without the Consent of our legislatures.

He has affected to render the Military independent of and superior to the Civil power.

He has combined with others to subject us to a jurisdiction foreign to our constitution, and unacknowledged by our laws; giving his Assent to their Acts of pretended Legislation:

For Quartering large bodies of armed troops among us:

For protecting them, by a mock Trial, from punishment for any Murders which they should commit on the Inhabitants of these States:

For cutting off our Trade with all parts of the world:

For imposing Taxes on us without our Consent:

For depriving us in many cases, of the benefits of Trial by Jury:

For transporting us beyond Seas to be tried for pretended offences

For abolishing the free System of English Laws in a neighbouring Province, establishing therein an Arbitrary government, and enlarging its Boundaries so as to render it at once an example and fit instrument for introducing the same absolute rule into these Colonies:

For taking away our Charters, abolishing our most valuable Laws, and altering fundamentally the Forms of our Governments:

For suspending our own Legislatures, and declaring themselves invested with power to legislate for us in all cases whatsoever.

He has abdicated Government here, by declaring us out of his Protection and waging War against us.

He has plundered our seas, ravaged our Coasts, burnt our towns, and destroyed the lives of our people.

He is at this time transporting large Armies of foreign Mercenaries to compleat the works of death, desolation and tyranny, already begun with circumstances of Cruelty & perfidy scarcely paralleled in the most barbarous ages, and totally unworthy the Head of a civilized nation.

He has constrained our fellow Citizens taken Captive on the high Seas to bear Arms against their Country, to become the executioners of their friends and Brethren, or to fall themselves by their Hands.

He has excited domestic insurrections amongst us, and has endeavoured to bring on the inhabitants of our frontiers, the merciless Indian Savages, whose known rule of warfare, is an undistinguished destruction of all ages, sexes and conditions.

In every stage of these Oppressions We have Petitioned for Redress in the most humble terms: Our repeated Petitions have been answered only by repeated injury. A Prince whose character is thus marked by every act which may define a Tyrant, is unfit to be the ruler of a free people.

Nor have We been wanting in attentions to our Brittish brethren. We have warned them from time to time of attempts by their legislature to extend an unwarrantable jurisdiction over us. We have reminded them of the circumstances of our emigration and settlement here. We have appealed to their native justice and magnanimity, and we have conjured them by the ties of our common kindred to disavow these usurpations, which, would inevitably interrupt our connections and correspondence. They too have been deaf to the voice of justice and of consanguinity. We must, therefore, acquiesce in the necessity, which denounces our Separation, and hold them, as we hold the rest of mankind, Enemies in War, in Peace Friends.

We, therefore, the Representatives of the united States of America, in General Congress, Assembled, appealing to the Supreme Judge of the world for the rectitude of our intentions, do, in the Name, and by Authority of the good People of these Colonies, solemnly publish and declare, That these United Colonies are, and of Right ought to be Free and Independent States; that they are Absolved from all Allegiance to the British Crown, and that all political connection between them and the State of Great Britain, is and ought to be totally dissolved; and that as Free and Independent States, they have full Power to levy War, conclude Peace, contract Alliances, establish Commerce, and to do all other Acts and Things which Independent States may of right do. And for the support of this Declaration, with a firm reliance on the protection of divine Providence, we mutually pledge to each other our Lives, our Fortunes and our sacred Honor.

Georgia

Button Gwinnett

Lyman Hall

George Walton

North Carolina

William Hooper

Joseph Hewes

John Penn

South Carolina

Edward Rutledge

Thomas Heyward, Jr.

Thomas Lynch, Jr.

Arthur Middleton

Massachusetts

John Hancock

Maryland

Samuel Chase

William Paca

Thomas Stone

Charles Carroll of Carrollton

Virginia

George Wythe

Richard Henry Lee

Thomas Jefferson

Benjamin Harrison

Thomas Nelson, Jr.

Francis Lightfoot Lee

Carter Braxton

Pennsylvania

Robert Morris

Benjamin Rush

Benjamin Franklin

John Morton

George Clymer

James Smith

George Taylor

James Wilson

George Ross

Delaware

Caesar Rodney

George Read

Thomas McKean

New York

William Floyd

Philip Livingston

Francis Lewis

Lewis Morris

New Jersey

Richard Stockton

John Witherspoon

Francis Hopkinson

John Hart

Abraham Clark

New Hampshire

Josiah Bartlett

William Whipple

Massachusetts

Samuel Adams

John Adams

Robert Treat Paine

Elbridge Gerry

Rhode Island

Stephen Hopkins

William Ellery

Connecticut

Roger Sherman

Samuel Huntington

William Williams

Oliver Wolcott

New Hampshire

Matthew Thornton

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This Moment of June

I spent the weekend in Pittsburgh celebrating my grandma’s ninety-third birthday. I hadn’t seen her since 2021, and I’m missed her; one of my cousins got married last summer but there was COVID so I wasn’t able to attend the wedding. (Boo hiss) It was so nice to see her again and give her a big hug!

I also loved seeing my aunts and uncles and catching up with my cousins. My godson is learning Japanese!

On Sunday we went to Mass with my Aunt Chris (who is also my godmother) and Uncle Tom, and one of their grandchildren, who is adorable. We had brunch at Eat ‘n Park afterwards. It’s never a bad day when you an have Eat ‘n Park, in my estimation.

I came home to find the first perfect cherry tomato was ready on the vines, and it was delicious. I can’t wait for the rest of them to ripen. There are about 30 tomatoes in various stages of growth out there right now.

How’s your June been?

I'm In Public Discourse! (And a sale!)

I’m very excited to share that an essay of mine has been published in Public Discourse!

This is my first journal piece, and I’m very excited about it. In it I talk about how transplants work, the gift of more time, and (yes, of course) memento mori!

Let me know what you think!

And speaking of the book…

The Ave Maria Press Memorial Day sale is here! Through Monday, use the code REMEMBER23 for 25% off and free shipping. This is a great time to pick up a copy of Living Memento Mori (or get gifts for people!)

I hope you have a great Memorial Day weekend!

Putterings

My garden grows!

Long time no write! Time is just slipping by and I realized it’s been awhile since I’ve posted here. So here we go!

My garden, as you can see above, flourishes—I even have my first tomato!

It’s little but it’s there!

**In the garden this year I’m growing lavender, sweet basil, mint, and cherry tomatoes. I’ve never grown any vegetables before but when I saw that this type of cherry tomato grows well in containers I thought I’d give it a whirl. My grandpa grew tomatoes in his backyard, and I loved helping him take care of them and seeing the ripe tomatoes lined up on the kitchen windowsill. I didn’t really think they’d grow, but behold! So today I’m off to the hardware store to get a bigger planter, a tomato cage, and a trowel.

I’m hoping to dry a lot of the basil so I can have it on hand throughout the year. The mint is doing well, and the lavender is too, but I know the lavender is really going to be dependent on our weather. I tried to grow it a few years ago and the summer was so wet that it killed it. So I’m hoping we only have a moderately wet summer so it doesn’t drown. I had to really cut the mint back a few weeks ago because it had gone all leggy, but it’s doing better now.

**I’m going to have an essay published in The Public Discourse, probably at the beginning of June! It’s about transplants, gratitude, and memento mori (because I do think about that!) When the article is up I’ll post a link here and on my social media (you can find the links to all my accounts on the blog sidebar).

**Scotland trip planning continues! We’ve booked our tickets for Britannia, The Palace of Holyrood House, as well as some afternoon teas and meals. Can you tell I’m EXCITED?

Hive mind: Best tips for a long flight? I’ve never taken a trans-Atlantic flight! Tell me what I need to know/pack/do!

**In Knitting, I’m obsessed with the Sophie Scarf and the Sophie Shawl. So easy, so elegant, and so fun.

Here’s a completed Sophie Scarf in La Bien Aimee’s Merino Boucle “There Goes My Yarn Diet”

I’m currently knitting the Sophie Shawl in Quince and Co’s gorgeous Phoebe Yarn in the Orion color way. I’m doing the largest size, so you’d need two skeins of Phoebe to knit this up. These are perfect accessories for adding a little bit of flair to an outfit or for keeping the A/C chill off!

Phoebe in Orion

How’s your May going?

Transplant 101: How Transplants Work

One of the best parts of post-transplant life—having nieces!

It’s the end of Donate Life month, and I’ve realized that a lot of people don’t know how transplants actually work. As in, I think a lot of people think that you have the transplant and….that’s it! Poof! Magic!

As much as I wish it were Poof! Magic!, it’s not quite that simple.

The big barrier for transplant wasn’t the actual surgery; surgeons knew how to do that part. The issue was keeping the body from destroying a foreign object, ie, the donated organ (s).

Your immune system is exquisitely calibrated. It knows what’s “you” and what isn’t you, and that’s why it works—it fights things that aren’t you (ie, pathogens) so that you don’t get sick. It likes to kill things that don’t belong, and while that’s great when it’s germs it’s killing, it’s not so great when it’s a vital organ.

So transplants couldn’t happen until immunosuppressive drugs were found. These drugs do what their name says—they suppress the immune system, basically hacking it so that it doesn’t work as well, which means it doesn’t try to kill the thing that “isn’t you”, but is keeping “you” alive. When the body tries to kick out the transplanted part, that’s called rejection. (Rejection is complicated, and there are different types. I’m trying to keep this simple, so I’m just calling it all rejection.)

Your chances for rejection are highest immediately after transplant. At this point in my post-transplant life, rejection isn't really a huge concern. Bu right after, it definitely is the highest concern. So the immunosuppressive meds are at their highest doses immediately post-transplant, and in the years following. As you get father out, the meds decrease.

I’m on three types of medications, broadly:

• Prograf (tacrolimus), aka, “tac.” This is my immunosuppressant. I will take it the rest of my life. When I first had my transplant, I was on a higher dose than I am now, and I was also on another immunosuppressant, which we dropped many years ago now.

• Steroids, which are also immunosuppressive. I am on five milligrams of prednisone, and I will be on that for the rest of my life. Doctors are now starting to experiment with taking people off steroids a few years post-transplant. We tried that with me, but my body did not cooperate. (My body likes steroids, because I have CF related arthritis. Steroids make joints happy!)

• Prophylactic antibiotics, meaning, I’m taking these not because I’m sick, but so I don’t get sick. I take azithromycin (if you’e had a Z-pack, you’ve had this med) every day. I like to compare myself to a chlorinated pool.

• I also take a few other things that aren’t directly related to transplant/immunosuppression.

Now, keep in mind that we have to “hack” my immune system on a daily basis so that it won’t figure out that my lungs aren’t mine. That’s what these drugs do. I will take them forever and ever, amen.

It is a delicate dance—we want to keep my immune system in the dark, so to speak, but we also don’t want it to be so suppressed that I’m getting every single germ that’s out there. That’s not good.

At this point, what my team and I are worried about treating are the side effects of these medications. If you hack your immune system for seventeen plus years, as we’ve done for me, it’s going to….well, not work right! This puts me at a much higher risk of cancer, especially skin cancer, which is why I see my dermatologist for a full body check every six months, and why I check myself over regularly and am very aware of anything strange that pops up on my skin. (I’m going to my doctor on Friday, actually, to get a spot checked out. Better safe than sorry.) I am diabetic because of the meds. The meds cause other side effects, too, which vary from person to person.

But if you stop taking these meds, BAD THINGS WILL HAPPEN.

And this isn’t just transplant meds. I lost my hearing because of ototoxic (toxic to the ear) medications pre-transplant. We needed strong IV antibiotics to keep me alive, and that has the effect of me losing my hearing and needing my cochlear implant. But, that’s what I chose. (Now, CF doctors are working to be more cognizant of this, yay! I like!) Chemotherapy is probably the best known treatment that causes a lot of side effects that are not, to put it mildly, great.

But these are the choices we make to stay alive.

I’m on many fewer meds than I was at the beginning. At the beginning of my transplant life, I was on four antibiotics daily—now it’s one. I was on at least 40 milligrams of steroids—now it’s 5.

All of this is a big part of why finding the best possible donor match is so imperative. The closer the match is, the lower your dose of suppression can be, because we don’t have to “hack” it as much. I am very lucky that I have a very good match.

So, that’s how transplants work! If you have any questions, drop them below and I’ll try to answer them as best I can! :)

If there's a reason I'm still alive when so many have died

Miss Madeleine at Easter

It’s Donate Life month, so I thought it would be a propos to talk about something that seems simple, but is often not—gratitude post-transplant.

I will celebrate my eighteenth transplant anniversary in July. To me, that is mind blowing. I am eternally grateful that my donor, Suzanne, decided to donate her organs. Otherwise, I would be dead. I would’ve died at age 23, eighteen years ago.

I would’ve missed so many things, not the least of which is seeing my siblings get married, seeing my godson grow up, getting a new goddaughter in Patty, and meeting my two precious nieces.

Miss Hailey

Now, that being said, that doesn’t mean I don’t have bad days. If you’ve read my book, you know this. There are days when I am sick of doctors, sick of meds, sick of spending time in hospital waiting rooms. That’s normal. Med side effects can be really terrible.

But the thing is, I’m alive. I never come out of an appointment going, I wish I hadn’t had my transplant.

Post transplant life isn’t a life with no health problems. It’s different health problems, but I’ll take it because I am alive. The meds cause problems—we’ve been over this here. Diabetes, early menopause, weight gain, messed up joints—it’s happened to me. I deal with it, some days more gracefully than others. But I never wish away my life.

My friend Sage never got the chance I got. I think about her so often, and when I see people saying that they aren’t grateful for their transplant, I get really angry because I miss her so much.

To me, that dishonors your donor. That dishonors the gift.

Seventeen people die daily waiting for an organ that will never come. Every nine minutes, someone else is added to the national list.

I don’t understand how I got so lucky. I don’t know why I’m alive when so many have died. (If you don’t get that reference, here you go:

To not realize how lucky you are, to not be grateful that you are still alive every single day post transplant, is….unconscionable. (And most of the recipients I know are so grateful. We are.)

I could’ve been one of the 6,000 people who die every year waiting. I wasn’t. I don’t know why. But as long as this ride lasts, I will be eternally grateful for it, even on the days when I want to SCREAM at the incompetence of medical professionals and the insanity that is parking at the New Resort.

Because I’m here, when I could very well not be.

Easter birthday!

Happy Easter! He is Risen!

This year my birthday fell on Easter (for the first time!) and that was pretty exciting. I was born on Good Friday but my birthday has been all sorts of days—Holy Thursdays, Palm Sundays, days in the Octave, and once even the Annunciation! (Transferred because it fell during Holy Week.) And sometimes it’s just in “plain old” Easter or Lent.

This year mom and dad and I went to dinner at the Barn, where I had the ost delicious halibut with handmade lemon ricotta ravioli…

Followed by dessert at my brother and SIL’s house, where I got to snuggle Hailey (an excellent birthday gift!)

AND I got to talk to Melanie and Maddie!

Giggles everywhere.

So it was a very good birthday.

Holy Week: Binding Up Jesus' Wounds

“The greatest acts of fidelity are the silent ones. We must never allow ourselves to underestimate the value of those supposed small acts of fidelity…In our day Christ is suffering much, both from members of His Church and from those outside it. By humble, silent fidelity, we are in our measure trying to heal these wounds that Christ receives. He must not be wounded by us. Let us take this deeply into our hearts. Where are we going in Holy Week? To heal the wounds of Christ in His Mystical Body, the wounds we too have inflicted on Him. …

“May this week be, by our manner of living and our silent fidelity, a week of great renewal for the Church.”

—Mother Mary Francis, PCC

A REALLY big sale!

My book is currently on MASSIVE sale at Ave Maria Press—it’s $2.

That’s right, folks. TWO BUCKS. That’s it!

That makes it a great time to get not only a copy for you, if you haven’t done it yet, but also copies for other people. Early Christmas gifts! Easter baskets! Presents just-because!

This is only happening at the AMP website, so go shop. Do it!

Jinx

Man I hate it when I jinx myself…

So I write a post about how to live Lent when life is Lent-y, and I think, oh this hasn’t happened for awhile…

AND THEN IT HAPPENS.

Sigh. I bring these things upon myself!

Well, not really. It has been a very long time since I’ve had any sort of pulmonary infection issues so I was probably due, to be honest. But I’m doing a course of oral antibiotics and it’s working beautifully, so I feel much better. I’m still dealing with some lingering chest pain, but I know that will get better as the rest of my body heals. I have a week to go on the antibiotics and I’m being very intentional right now in giving my body what it wants (liquids, rest, stretches!) and adding back my Peloton workouts when it feels right to do it. I’m hoping to jump back in with yoga this week (short classes!) to help get some mobility back to my lower right chest, because that’s where the pain was, and I need to start opening that area back up with some good (gentle!) stretches.

I’ve also learned that I can have a lung infection and my blood glucose will be fine. That’s weird, but oh well, t least I know now. The more I learn about blood glucose the more I realize it really is a crazy thing!

So the reason it’s been quiet around here is because of all of the above. I’m very glad to be on the upswing!

Currently on the needles: a long shawl with an interesting construction, which is being knit up in silk! I’ve never knit with silk before and I’m really enjoying it.

Living Lent when your life is pretty Lent-y!

There have been a lot of times in my life when Lent rolls around, people ask me what I’m doing for Lent, and I’m thinking, “MY LIFE IS CURRENTLY LENT.” (Not the case this year.)

February and March used to be pretty “sick” times in my life—it was near the end of the school year so my body was getting tired of the early wakes and the heavy schedule. I’d be doing IV antibiotics, or I’d have TB (That was a fun Lent!), or I was in the hospital for some sort of other thing or another.

Life was pretty Lenty.

Pre-transplant, I was not allowed to fast. And I’m not allowed to fast now because I’m diabetic. There was a, oh, five year period where I could fast, and I tried it, and wow, I was so not good at it. Really, really bad.

But all this to say that some years, your Lent chooses you, and you really might not have to do much else.

If you’re in that position, don’t be hard on yourself. Remember what happened to St. Teresa of Avila: One Lent, she had all these great plans for the Lord. She was going to suffer ALL THE THINGS! She was going to do ALL THE PENANCES!

And then she got sick and was in bed for all of Lent. And she decided to complain to the Lord about this.

“Lord,” she said, “I had all these GREAT IDEAS FOR LENT and then you RUINED THEM. (I’m paraphrasing.)”

“That was your plan for Lent,” He said. “This is my plan for your Lent.”

Oh. Well then.

St. Teresa did not do all the things.

It’s OK if you can’t make it to stations every Friday or daily Mass or do whatever other penance you’ve come up with. Bodies can be super dumb. Or, sometimes, what the Lord wants from you is something else.

Either way, don’t beat yourself up if your life is super Lent-y at the moment and you cannot do ALL THE THINGS! Do what you can do, offer up what you can’t, and remember St. Teresa.

"Joy Depends on the Cross"

Botticelli, “Holy Trinity” , tempura on panel

The title for this post is the epigraph for my book. It took me. long time to find it—I wanted something perfect to encapsulate what I thought the book was about, and it had to have the right mix of seriousness and joy. Upon re-reading The Sign of Jonas while I was writing Living Memento Mori, this quote jumped out at me.

But a funny thing about different types of Christianity is how often we forget the truth of this statement.

I was recently reading Jinger Vuolo’s (nee Duggar) new memoir, and the “prosperity gospel” idea (aka, “God as Vending Machine”) is detailed throughout. The church she was raised in was huge on this (For context: Gothard was the founder/leader of her church):

“Gothard taught me that if I was suffering, there was a good chance it was because of some hidden or secret sin in my life. I was disobeying God in some way, and that was why I was experiencing pain and hardship. He even said that “most illnesses today are the result of bitterness, or guilt, or just lack of love.”…

“Just as problematic as Gothard’s opinions, however, was his guarantee of success for everyone who follows his rules. Gothard taught that the future I wanted—husband, kids, financial freedom, and health—would be mine if I followed everything he was teaching. He claimed his seminars were the key to success, and I was sure to get all those blessings if I obeyed. In other words, I was being taught a version of the health and wealth gospel.

“The health and wealth gospel is simply this: God wants to give His children money and physical health, but they must have faith that He will bless them. The size of someone’s financial success is proportional to the amount of that person’s faith and obedience. Here’s what Gothard said about money: “God uses riches to bless those who obey his commandments, and he removes money from those who violate his commandments.”…

“When I was a teenager, I would have said that I rejected the health and wealth gospel. Gothard himself would have criticized what prosperity preachers were teaching. But I did believe that obedience was the key to success in life. I was convinced that if I obeyed, God would reward me with the blessings. In other words, I believed the health and wealth gospel. ”

As I read, I kept thinking, but this isn’t the gospel at all.

The radical truth of the Incarnation is that it led to the cross. It led to extreme suffering. And it happened to the most perfect Man who ever lived.

To paraphrase St. Elizabeth Ann Seton, If Christ went to the cross, how do you think you’re going to get out of suffering?!

You’re not. There’s no way you’re going to avoid it. It doesn’t matter how good of a Christian you are, how perfect of a person you are—suffering is going to happen to you.

“Life is pain, highness,” says Westley in The Princess Bride, and it’s true. There’s no wonky interpretation of the gospel that’s going to change that. Almost all of the apostles died horrible deaths. St. Paul was beheaded. If you read the lies of the saints, you’ll see that a lot of them had severe trials to go through. That’s part of Christianity-—the part we don’t talk about very much, because we don’t want to be downbeat or negative.

But joy fully depends on the cross. We only get eternal joy, eternal happiness, because of the cross. There is no eternal bliss without death on a Friday afternoon.

Today (February 11) the Church celebrates the feast of Our Lady of Lourdes. Our Lady appeared to St. Bernadette Soubirous, a very poor, often ill girl whose family lived in a former jail. In one of the most poignant parts of the apparition, Mary told Bernadette, “I do not promise you happiness in this life, but in the next.”

Yes, we want to be happy here. We don’t want life to be an unending “valley of tears”. But at the same time, we need to remember, as St. Therese said, that “this world’s our ship and not our home.”

There are lots of “benefits”, if you want to put it that way, to following Christ. But He didn’t say it was going to be easy.

Lent-y goings on!

So, Lent is upon us, and that means it’s time for me to ramp up talking about MY BOOK.

You can get it everywhere ( here is the Amazon link, you can find more links to buy here) ! You can even get a signed book from me! Just contact me—signed books are $20 and that includes a prayer card and a bookmark, and shipping!

If you are in the Columbus area, I will be doing a book signing at the Columbus Catholic Women’s Conference next weekend (Feb. 18) at the Ohio Expo Center—details and tickets here.