Faith Through Hearing-- True Story

"But after you have suffered for a little while,

the God of all grace, who calls you to share his eternal glory in union with Christ,

will himself perfect you

and give you firmness,

strength, 

and a sure foundation."

1 Peter 5:10

Transplants and the Great Outdoors

During the wedding planning process, Ben and I set up three different registries.  We knew that most people probably wouldn't even go onto our registries and that they would just give cash or checks.  And most did.  But, just in case we had some "gift givers"--and by that I mean people who enjoy the registry process, going through the list, picking out the items--we selected some gifts from Macy's, Amazon, and a honeymoon registry.  Our Macy's registry was our "grown-up" registry, which is what we like to call it, because we asked for things that grown-ups need. Like drinking glasses and an awesome rice cooker.  We also asked for a Kitchen Aid Stand Mixer Ice Cream Attachment.  That counts as something grown-ups need, right?

Our Amazon registry was basically filled with stuff that we could buy to facilitate our hobbies.  Spending time outdoors is one of our favorite things to do, along with traveling.  How original!  A married couple who like traveling and going outside (OK I'll stop now. I know sarcasm doesn't always come across well in print).   So we asked for some camping equipment of our own. We got a lot of great gifts from our friends and family members and this past weekend we decided to break in some of our new gear. 

Before we left for the trip I was kind of nervous because this was the first major trip that I've done since I had the transplant.  We went camping in Virginia of course, so it's not like I went on an eight hour flight.  But when you have a transplant there are certain things that you try to avoid:  germs, germs, bacteria, bug bites, animal bites, oh and also bacteria and germs.  Spending the night outside, eating outside, sleeping outside proved to be my first big challenge since living on my own post-transplant.  So I came up with a short list (and added some pictures) for the bacteria-conscious and low-sodium diet campers out there.

Tip #1:  Un-can your beans.
 

Ben and I wanted to keep things easy for this trip. I know some people like to make gourmet meals with fancy stoves for their camping trips.  But Ben and I didn't actually request a fancy stove on our registry.  We decided to go with the free option of cooking things over the fire with sticks and a pan.  So baked beans and hot dogs were on the menu.  There's really no way to get around the processing of hot dogs.  Those are just one of the few things that really taste much better the way they're made...how ever they are made.  But I knew that I could cut out most of the sodium sodium, high fructose corn syrup, and other additives that come with canned baked beans.  So I made my own, basing much of what I used on this recipe.  I started a little late (like the day before we left for the trip) so I didn't have a two-hour block of time to just stand at the stove and stir, like the recipe says. So I put the beans in my slow-cooker for eight hours.  And I have to say, these beans were so good.  I put enough for Ben and I in a mason jar, and froze the rest.  

And yes, behind those beans you can see the box of my new RED Kitchen Aid Stand Mixer.  EEEEEEE!

Tip #2:  Also have wipes.
One of the first things they tell you as a transplant patient is that the drugs we take make us more susceptible to illness.  I take immunosuppressants to keep my body from attacking my dad's kidney.  So I have to wash my hands all the time, and when I can't get to a faucet I use hand sanitizer.  Touching the outside of a tent, then the car, then grass, then the dirty picnic table, then eating hotdogs with my hands was not gonna be the right way to go.  Ben and I bought roughly nine liters of water with us on the trip to use for drinking (I have medicine to take, so I drink a lot of water), washing, and whatever else comes up.  I also made sure to pick up three different types of wipes:

I picked these anti-bacterial wipes along with a travel pack of Clorox bleach wipes.  

Tip #3  Pack extra medicine.
 I made sure I had enough medicine to cover me for a while.  If I had forgot the wipes, oh well.  Forgot the tent, oh well.  Forgot my medicine?  That would have been an "oh sh$%" moment.  Another thing the doctors and nurses tell transplant patients:  always take your medicine.  Missing a dose, could mean rejection.  And that's something that seriously scares the crap out of me. I want to be able to go on trips and have fun like normal people do.  But I can only relax and have fun when I know my medicine has been taken or that I at least have extra in my purse.  People who don't take a daily pill for an illness don't necessarily get how missing a dose can just completely ruin your mood.  Even Ben, who's the most supportive husband and even reminds me before bed to take my medicine, has had moments where he's asking "Do your really need it?" to avoid having to turn the car around or stop whatever exciting thing we're doing or about to do.  The answer is always "yes, I really need it."  Camping or not, it's my responsibility to protect my body, and protect my dad's investment in my life.  Who cares about camping if your kidneys don't work?  Nobody, I hope.

Our first camping trip as married people was fun and just what we needed. We're looking forward to taking this show on the road/plane in just 3 1/2 weeks.  Not sure if I mentioned it yet, but we're going camping at the Grand Canyon!  And Sedona, Arizona which I've only heard great things about.  I've never been to either place so this will be my first big adventure, post-transplant.  Here's more pictures from our first trip with our wedding gifts:

We were pretty close to our campsite but we had to stop so that Ben could eat without veering off the road.  View's not bad, either.

Our site, and you can see our tent!  The weather was perfect so we set it up without the rain fly.  From inside the tent, we could stare up at the beautiful sky.  

And at night, we could look up at the stars, which we don't really get to see as much since we live in the city.  Below you'll see our chairs.

Now look at us actually using the chairs!

A good-bye view from Loft Mountain.  These memories come courtesy of all the people who gave us these awesome camping gifts and gift cards.  We couldn't have done it without you.  Thank-you cards are on the way.  It's just taking forever to write them. 

Pill Poppin Like a Boss

Two Months with the Kidney

When I was diagnosed with kidney disease 10 years ago, I had my first experience with taking medicine.  I'd never been one of the kids with severe allergies or asthma inhalers.    I think at most, any medicine I took was maybe children's Tylenol, or Nyquil. And that was enough for me because those liquid cough medicines do NOT taste like cherry. 

The very first pill I had to take to treat my disease was a blood pressure medicine called Lisinopril.  Courtesy of Mayo Clinic, Lisinopril is an ACE inhibitor drug used to treat high blood pressure, and most ACE inhibitors are freaky good at lowering blood pressure.  The story of my experience with Lisinopril is like a Shakespearean tragedy.  It was the first medicine I ever took. It was the first medicine that I got yelled at by my doctor or not taking it.  But she only did it out of love (thanks Dr. Yao!).  I didn't realize how important this was.  At 16 years old, my blood pressures were clocking in at 140/90 (that's not normal).  They were still trying to figure out what was wrong with me because my kidneys were still leaking protein into my urine.  I had to get my blood pressure under control to prevent further damage.  Lisinopril was a main part of my regimen for going into remission.  

After taking it for about six months, one day I realized that I had been taking the wrong dosage for at least two months.  Someone at the pharmacist screwed up (yeah, I'm not afraid to say it.  THEY SCREWED UP) and gave me a pill to take that was twice the amount that I was supposed to take.  I went into a minor panic but then I'd also noticed that once I started taking twice the amount of Lisinopril, the amount of protein in my urine decreased significantly.  That is a good thing.  Protein in the urine is bad, bad thing.  I don't know how, but the Lisinopril played a big part in my getting to remission (where I stopped experiencing any symptoms of kidney disease).  This is why it was a bit confusing to me when six years later I had an allergic reaction to the drug and had to be taken off of it.

In the very early stages of my disease, Lisinopril was paired with Prednisone, a corticosteroid.  Most people with asthma, arthritis, or allergies know about these types of drugs.  They can also help treat the symptoms of kidney disease by suppressing your immune system.  I was on taking about 1000 milligrams intravenously every other day for a while. I was also taking Cyclosporine.  Cyclosporine is an immunosuppressant.  These drugs work by lowering your body's immune system to prevent it from attacking your tissues or organs. These drugs can also make you more susceptible to other infections because your immune system isn't working 100 percent to prevent infections.  

That brings me to present day.  What am I ingesting these days?  

Nom nom nom

Top Left:  That's one of the awesome pill boxes that was given to me at the hospital.  The whole set is all of the days of the week, broken up into single days so that you can just grab a day and go.  Then separated by morning, noon, evening and bedtime.  

Bottom Left:  This is what my set of morning and evening pills kind of looks like now.  I say "right now" because depending on the results of my weekly labs, the amount of pills could increase, decrease, or stop.

• Prograf aka Tacrolimus:  just your basic anti-rejection drug.  They are the skinny white pills.  I have to take these because no matter what, my dad's kidney will never be mine.  And my body knows that. So if I stop taking this medicine, which tricks my body into thinking my dad's kidney is mine, then my immune system will try to "heal me" by attacking the organ.  That's just what immune systems do.  They keep out stuff that's not supposed to be there, like viruses and infections, and sometimes other people's kidneys.  At one time I was taking 20 Prograf pills a day.  Now I'm down to just six a day.
• Cellcept aka Mycophenolate: another anti-rejection drug. It's blue and orange. It performs the same function as Prograf.  But, when I started taking it I had to sign a form that said I would not get pregnant while taking this drug.  So when Ben and I decide we want kids, I have to tell my doctors so that I can take something else.
• Norvasc aka Amlodipine:  It's a round white pill and it helps control my blood pressure.
• Bactrim aka Sulfamethoxazole:  This is another round white pill and it's used to treat infections.  I don't have any infections that I know of, but I still have to take this.
• Ketoconazole:  I take half of these white tablets twice a day.  It's actually an antifungal medicine, but my doctors prescribed it to raise my Prograf levels, so that I wouldn't have to take 20 of those pills each day.

Top Right:  Iron Supplement

Middle Right:  These pink pills are Valcyte. I take it every evening to prevent an infection that transplant patients are more susceptible to.  

Bottom Right:  Aspirin. I wasn't allowed to take this before my transplant, but now I take it to prevent blood clots.  

I knew I'd have to take a bunch of pills every day after the transplant.  And it really does get easier.  Sometimes I get scared when I think about forgetting to take a medication, because I know the life of my transplant and my life, really depend on it.  But I know it will happen eventually.  Everyone forgets, at least once.  I'm really looking forward to the day where there's just one pill to take to help protect your transplanted organ. And I'm looking forward to the day when the cost of prescription drugs go down.  This is why I don't go shopping for clothes anymore.  These days, a weekend shopping trip consists of me at Whole Foods or Wegmans and CVS Pharmacy.  Next year, I might be able to add Home Depot to this list.  Because I'm married now.  That's where married people go.  Groceries, pills, mulch. There's no way I'm 26.

Fireworks, Family, Picnic

Ahh, the day before a holiday from work...so sweet.  Just knowing tomorrow is not "business as usual," and I don't have to wake up early, make phone calls, and type until my fingers bleed brings tears to my eyes.  Sooo looking forward to relaxing.  Look at me! I had a month off of work, plus a long weekend for my wedding and I'm still grabbing for days off.  And it's not the disease that's making me feel this way.  I'm guessing it's just laziness.

So what is the Fourth of July made of?  Besides fireworks--family, food, picnics, nice weather.  The way life should be.  Get excited for the holiday and take a look at the new flock of pictures added to my Rehearsal Dinner Recap!  Some of my favorites:

 

 See all the pictures here:  Rehearsal Dinner Recap

 Happy Independence Day! 

(new post Friday)

July 4 and Sodium-- Danny's Top Five

My sister Danyelle is here, with another top five! We've collaborated on some of the best ways to enjoy the upcoming holiday (you didn't forget did you?!) without going overboard on the salt and processed foods.  Here's to enjoying Independence Day, without the high blood pressure!

One of my favorite things to eat on the 4th of July is ribs. To me, these are a must have. We all know the fall-off-the-bone quality that we long for once summer barbecues roll around.  But what about flavor?  That’s just as important.  Most ribs are brined, rubbed, or marinated before being put to the fire.  Then they’re covered in one of the many varieties of delicious barbecue sauce.  For those of us following low-sodium diets, eating or cooking ribs can be a challenge!  If you’re cooking ribs this holiday, an easy way to cut out a bunch of sodium is to stay away from bottled or packaged marinades and rubs.  These types of condiments can be added to Jewel’s list of “processed foods.”  Sure they make infusing flavor into your food simpler, because all the mixing work is done for you.  But most of these premixed seasonings are LOADED with salt. 

Tip 1:  Make your own rub or marinade.  By doing this, you can control how much salt is in the seasoning.  You can even follow a recipe online for ribs, and if a recipe calls for a tablespoon of salt, try using just half a tablespoon.  It’s as easy as that! 

Tip 2:  Leave the barbecue sauce on the side. If you want to be friendly to your low-sodium friends, don’t slather barbecue sauce on the ribs when they come off the grill or out of the oven.  Mix up some sauce in a bowl and let people apply it for themselves.

No July 4^th celebration is complete without side dishes.  And my family is big on the sides.  You’ve got so many to choose from:  potato salad, macaroni and cheese, pasta salad, coleslaw.  But watch out for hidden sodium content in these dishes that usually have a ton of ingredients. 

Tip 3:  Serve more simple vegetables. Sides like potato salads usually have a ton of mayo or mustard or dressing stirred into them.  Try incorporating more sides that have vegetables and simple seasonings.  Like one of my favorite things to eat:  Corn on the Cob.  No salt needed there!  It's natural sweet taste is just enough.  Mix chilli powder and lime juice and zest into some unsalted butter for a great low-sodium and flavorful spread for the corn.  Or try grilling a few vegetables, flavoring with some balsamic vinegar and olive oil.  Speaking of vinegar….

Tip 4: Set aside the bottled dressings.  The best pasta salads usually have a thick coating of Italian dressing.  But you can make your own vinaigrettes and dressings to go over pastas and vegetables with just a few simple ingredients.  Most start with an acid (balsamic vinegar, red wine vinegar, or even lemon juice) and some olive oil.  Add in some garlic, herbs, and however much salt you like.  It tastes fresh with, of course, half the sodium!

Lastly, dessert! There are so many things to choose to go along with your 4th of July dinner, but there's nothing better than slicing some watermelon and lighting some fireworks. 

Tip 5:  Incorporate the red, the white, and the berries!  The best thing about the summer is the abundance of fresh fruit and berries.  For a low-sodium sweet trying making a dessert that includes some of the best summer fruits.  Or just eat the fruit by itself with some homemade whipped cream! You can’t go wrong with either option.

I hope these recipes help give you some ideas of what to cook.  Good luck and have a great 4th of July!!!!!