Zoe Belle

Have you seen this dog?!?!?

Answers to 'Zoe', 'Zobelle' and sometimes 'Sweet Girl'. She likes her belly rubbed and will flip out over yogurt. If you let her lick out your empty yogurt cup you get to be her new BFF for the day; after that the ADHD kicks in and she picks someone new. She likes to chase frisbees and bark at anyone that walks by her house. If you meet her she'll likely greet you by slobbering all over you and/or jumping on you (sorry, she's young, hyper and no matter how much we talk about it she just doesn't understand personal space).

That's all. Just wanted to show you my awesome dog. Have a great day.

Learning ‘Steer’

I do not remember my first bike very much. I know it was pink since every little girls bike was pink when I was a kid (I do remember I was disappointed over the lack of a yellow or blue bike for a girl). I also remember that it had the little 5-6 inch streamers off of the end of each handle, which promptly broke or fell off after one summer. I also remember that I was to ALWAYS wear a helmet which stems from safety rules on top of the fact that we lived in the mountains and anywhere I rode my bike was usually a steep incline or a gravel road. I may not remember much about my first bike, but I remember the first time I rode it around the yard.

I am not sure how old I was, but I know I learned to ride a bike fairly young because in the summer if it was not raining (and sometimes if it was) we were told to “go play outside” and we did. My parents took us out to buy me a new bicycle and my younger brother a new tricycle one summer evening after my dad got off work. I was so excited. Finally, I could ride a bike like a grown up instead of the tricycle I had out grown months before! After the installation of the training wheels my dad walked behind my bike holding on to back and pushing me just slightly to prevent me from falling over on my first ride. We were going through the backyard approaching the swing set, but were aimed at a large boulder that sticks out of the ground beside the swing set.

“Steer” my dad ordered.

“Okay” I said. Although I had NO idea what he meant. I was too young to have heard the word “steer” used in context enough to know the meaning. However, my dad can be stern when he is trying to teach you things and I was too focused on not falling over to bother to ask what he meant. So we kept on rolling toward the rock.

“Steer!” This time a little bit more frustrated.

“Okay” I once again replied, while the thought going through my head was “we are going to hit that rock. Why doesn’t Daddy just turn us?” Evidently the concentration level it took to not fall off made me obvious to the fact that I myself was the one that need to turn the bike in a different direction.

“Joy, STEER!”

“Okay” I feebly said. Now it had gone way too far for me to ask what he meant when he was saying ‘steer’; each time at a slightly louder volume. Still I was wondering why we were not turning away from the rock.

Well of course my front wheel smacked right into the rock. My dad stood up straight and looked down at me obviously confused and frustrated that I had just driven my bike into a rock. “Why didn’t you steer away from the rock? You saw we were going to hit it.”

Then it clicked: That is what ‘steer’ means!

Before and Now

Life before I had a transplant was different in some ways that can never be understood except by those that have also lived with CF and/or have been through end stage lung disease. However, there are plenty of little things in day to day life that are much different than before. Sometimes something as simple as a very cold day or picking up a child can stop me in my tracks as I remember how very different things were when my lungs were on their decline.

Before cold weather led to shivering, which led to coughing, which led to not being able to catch my breath for several minutes. Now cold weather just makes me shiver.

Before I had to plan my days around 2 hours of vest treatments. Sometimes adding lengthy breathing treatments and/or IV antibiotics into the mix. Now I plan my day around what I want to do (and work).

Before I was unable to lift more than 5lbs when I had a PICC line or much more than that when I had a port. I often scheduled my friends in shifts throughout the day to carry my things for me (this was much more complicated in college). Now the only time I ask other people to carry things for me is when I'm feeling lazy and/or need help lifting a heavy item.

Before I either had to take a bath or be creative in the shower so as not to get the sterile dressing covering my port wet. Now it doesn't matter, they pulled my port out during my transplant, too much risk of infection with a permanent IV line going into your heart.

Before I had to pause to catch my breath even when walking. Now if I lag behind when running (not walking) it is because my legs can't keep up with my lungs.

Before I would consume ridiculous amounts of food in an attempt to keep weight on. Well some things don't change.

Before travel was inconvenient due to the amount of medical equipment I had to transport with me. Even a weekend in the mountains to visit my family and friends was sometimes out of the question because the effort to pack and load up everything was too much. Now my only travel constraint is money and often I ignore that fact and go anyway.

Before I needed a minimum of 8-9 hours of sleep to be able to function and I often scheduled naps when I was having a stressful semester because it took more effort than I wanted to admit. Now if I want to stay out until 2am I am still fully functioning the next day (although, maybe a little slower than normal).

Before people would recognize me by cough and/or laugh when I was in another room. Now I don't cough every few breaths and my laugh, while still loud, is not always recognized by people that always knew it before. I have been told that the change in my voice was the first very obvious change people noticed.

Before I had never broken or cracked a bone or had stitches of any kind. A double lung transplant cracked my sternum, gave me stitches to hold a central line in my neck, stitches to hold 4 chest tubes in place and staples across my chest from one armpit to the other.

Before my main goals in life were to get a college degree, a good job, a house, a husband and 2.5 kids. The American Dream. Now my goals are to enjoy life and spend as much time as possible with the people I love, doing the things I love and make as much of a difference as I can.

Before I rarely mentioned anything involving having a chronic illness and usually was hesitant to discuss it with new friends until I thought they wouldn't change their treatment of me with that knowledge. Now I couldn't really couldn't care less. I have a great story and if you want to hear it I'll share and if you want to ask lots of nosy questions I'll answer them.

Before I wondered when my lung infections would land me in the hospital again. Now I wonder when I'll have to deal with chronic rejection and/or kidney failure.

Before you wouldn't be able to get me to eat a hotdog unless I was starving and it was the only thing being served. Now I love them; so weird.

Before I would never set an exercise routine because getting my heart rate up resulted in feeling like I was breathing with a plastic bag over my head. Now I don't set an exercise routine because I'm lazy.

Before I was thrilled when my oxygen saturation level was measured to be at 94%; it meant I was in good shape the lungs were doing great. Now I get annoyed if my oxygen saturation is anything below 99%.

Epstein-Barr Virus

Fifteen days after receiving two new lungs I was discharged from the hospital. My parents had found an apartment for my mom and me to stay at during my minimum of three months of rehab and had moved my things out of my apartment near campus so my roommate could sublet my room. I was thrilled. I was exhausted not only from almost dying and massive surgery, but from the schedule the hospital had me on, which involved waking me up a few times during the night and interrupting my naps. Plus, the food in the hospital is terrible.

My parents had picked up all my new prescriptions from my pharmacy and had scrubbed down the new place to make sure it was germ-free (or as close to germ-free as you can really get). It was great. I could sleep the night through, and my mom had snacks sitting everywhere and was making me my favorite meals every night (I lost a significant amount of weight leading up to and after transplant, and since I was underweight beforehand it was pretty pathetic how tiny I was). Every Saturday I would sort out my medicines for the week in the tray given to me before discharge. I worked hard at making sure I had the new regimen of pills down.

Getting the correct level of immunosuppression medicine is an experimental process right after transplant. Every week I went to clinic and had blood levels drawn to check my tach (tacrolimus) level. The immunosuppression approach has 3 main medicines. Right after transplant mine were: Prograf (tachrolimus), Imuran (azathioprine) and prednisone. I took my prescribed dose of Prograf and Imuran every 12 hours and prednisone at a high dose until I tapered off to once every other day.

One Saturday about a month after my transplant, while sorting my medicines out for the next week I looked down at the Imuran bottle and saw to my horror that the pills were only 50mg The prescription was for “two pills by mouth, twice daily”. I had thought they were 100mg, and had only been taking one pill twice a day. I almost panicked, but calmed myself because it would not do any good to freak out and also I did not want my parents to worry. I put two pills in all the morning and evening slots and let it be.

A couple of days later I began having stomach pain. I talked to my coordinator, who did not see any reason for panic and told me to take it easy and let her know if it got worse. The next day I was fine, but then later that night I woke up to extreme stomach pain. I called my coordinator and she said to go the emergency room and she would call ahead and let them know I was coming. I was given some pain meds and had plenty of tests run and was eventually admitted.

The following day my neck swelled so much so that I looked like I was sporting a turkey neck. That is when I was finally diagnosed with Epstein-Barr (EBV). Most people get EVB at some point in their life, and if any symptoms are present they are similar to a cold. Once a person has been infected, EBV lives dormant in the immune system with little to no worry about after effects for a healthy person.

EBV however is not so simple for immunosuppressed patients. The treatment involves 2-3 weeks of IV drugs that are as powerful as chemo. After a PICC was placed (since my port had been removed during my transplant) I was trained on administering the IV drugs and making sure none of them touched any skin or other surface accept the sterile pad I had to lay out. It was so comforting knowing I could not touch the stuff or I would get a rash or burned, but it was okay to pump it into my veins.

I learned that the reason I had been infected with EBV is because my immune system was over suppressed. My Imuran was stopped immediately once the EBV was discovered. I have not taken Imuran since.

The Hand That Feeds

When I reached my junior and senior year of high school I was a pretty busy teenager. I was enrolled in honors level classes, involved in a plethora of extracurricular activities that would look good on college applications, working a part-time job and staying actively involved in my church. I was doing all of this around scheduling daily treatments to keep my lungs as healthy as possible which took up to 2 hours out of every day. I also knew my limits and it was VERY rare to find me awake past 10:30 during the week. I was up by 6:00 and without enough sleep I was inviting a cold or virus to throw me into the hospital. So it is easy to see how I had to be careful to use my time wisely.

In the fall my brother was on the soccer team and my mom went to every game. In the mountains where schools are few and far between, due to the low population away games could be up to a 3 hour drive away. My mom was there, cheering on my brother and his teammates and ready to give him a ride home that did not involve a long bus ride back up the mountain. This provided for plenty of evenings at home with just me and my dad.

My dad usually came home and spent whatever day light hours were left doing any work that may have needed to be done outside. If not doing work outside he would fall asleep in front of the television. With my mom on the road I was in charge of dinner these nights. I was never asked if this was something I wanted to do and I really was not okay that the responsibility had been handed to me, but I did enjoy eating so I just did what I was told.

In truth I did not really mind being in charge of cooking dinner. Acts of service is mine and Daddy’s main love language and making him dinner was an easy way for me to show love and a great way for him to know that as much as we fought his teenage daughter really did love him. Plus making whatever Mama had left for me to cook was nice break from homework.

I was not the best trained cook in high school (these days I’m a great cook) and since I was busy Mama was considerate enough to leave simple meals. This meant that Hamburger Helper was a regular at our house during soccer season. Daddy was never a big fan, but it was a meal and he did not do any of the grocery shopping so he was pretty good about eating what was put in front of him; until the last time I cooked for him for a period of about 6 years.

It was beef stroganoff, Hamburger Helper style as prepared by me, with a side of green beans. I don’t know whether it was too much beef for the month or whether it was a bad day at work that was not helped with a meal he was getting sick of, but I set the table and told Daddy supper was ready and that was the end of my good day.

The first words out of his mouth were “It’s about time you learned to cook something else besides this junk.” You would think that since I’m basically a clone of my dad he would have known that those words would have dire consequences for him. When Mama got home I informed her I would no longer be making dinner on soccer nights except for making myself a sandwich or warming up leftovers for me.

The next away soccer game I was in the middle of doing calculus homework when Daddy asked “what are we having for dinner?”

I replied “I’m having a sandwich. You can have whatever you want to make for yourself.”

Don’t bite the hand that feeds you and definitely don’t yell at the teenager with limited time and limited cooking skills that made you dinner when you don’t like what is served. You might have to fend for yourself from now on if your wife isn’t home.

Love and Hate

I have been told that I am great writer and it has been suggested that I write a book. Well the likelihood of that ever happening is slim to none. So, I started a blog. I am not even going to pretend I will update this regularly, but I hope when there are new entries readers can enjoy what I have to say.

I have way too much to do on this icy Tuesday to be typing a blog entry so I made a couple of lists to share with you. Enjoy.

Things that I love:
Laughing until I cry
Things with my name on them

Things that are yellow
The 48 and Under Club
Lasagna, well Italian food in general
Really hot summer days
Really hot summer days at the beach
Warm summer days in the mountains
UNC Basketball
Watching UFC fights
Grilling out
Mario Kart
My incredibly-large-has-no-personal-space-very-hyper-puppy
The friends that didn't bow out when things got tough
Dark nail polish

Quoting movie, TV and song lines in everyday conversation
Dark humor

My roommates

Things that I hate:
Smoking

Hypocrites
Bad Grammar
Bad Cell Phone Etiquette
122a Ashley Forrest Rd
Wendy's
Ignorance
Too much attachment to material things

Migraines

Vomiting

Things I loath with an undying passion:

PICC lines