Half of My Life = Our Life

Today is my 26th wedding anniversary. K and I have now been married for over half my life.

When we first met, it was on vacation. I was in Virginia Beach with my college roommate L, and K was visiting his cousin who was in the navy at that time.

It was absolute fate that we met. L and I were in a souvenir shop, looking at hoodies and such, and K walks in. We spent the next 20 minutes making excuses to stay in the shop. I ended up buying a pair of plaid boxer shorts with embroidered “Virginia Beach” on the leg, and finally walked out.

About 10 seconds later, K hurried out the door and caught up to us, inviting us to a corner outdoor restaurant for lunch. Although we had just eaten, I elbowed L not-so-discreetly and a little too enthusiastically said “sure!”.

In front of us was a cute outdoor pub called “Abbey Road” and we grabbed a table for three.

It was the beginning of a conversation during which we discovered a lot of coincidences.

* The fact that both of us were there in VA Beach by accident.

* The fact that we both originally were supposed to be in DC.

* When K offered to order drinks, he asked for Long Island Iced Teas, which at the time was my favorite cocktail.

…And so many more little things that collectively should have otherwise been a giant neon sign with arrows pointing to our table.

I can’t tell you how long we were sitting there. Long enough to have a few drinks and pretend to eat the nachos we ordered. It was March, and the sun was still setting earlier than later.

As dusk approached, L and I finally decided to take our leave. K asked for our hotel phone number. I gave it to him, and we met up with him and his friends the following couple of nights to hit up a comedy club and various social establishments.

From a Different World

K was so different from anyone I had ever met before. First, he was from the south. He had an accent, and was a true southern gentleman.

I was from southern New England, and had only dated people from pretty much the CT/NY/NJ tri-state area. K’s family lived in Arkansas, and at the time, he attended school in Missouri. He grew up moving frequently before he graduated high school, whereas I had never lived out of my home state.

The day we met

The Next Steps

After saying goodbye a few days after meeting and hanging out, my roommate and I drove the back up the coast to CT. Imagine my surprise when my phone rang that evening and K was calling from the plane.

“I just had to talk to you” he said.

That phone call was the first of nightly calls for the next 6 weeks. This was back when long distance calls cost extra, but you got a discount after 9 or 10 pm. We typically spent a good 3-4 hours on the phone nightly.

After the first month, we tried to cut back because we both got hit with massive phone bills, but we couldn’t stay away. In the meantime, K had sent me a care package with some fun stuff from Arkansas and also a special gift.

Though it didn’t seem logical, we were falling in love over the phone and letters. Oh, the letters! I’d write them during class, in between my school newspaper assignments, homework, etc. Practically every day, my mailbox would contain an envelope from Missouri.

Fast forward from the day we met to sometime in May – K was moving to CT. He had already been looking to transfer to a school with a good program for his major, and my school happened to be on the short list, amazingly.

Life Was Moving Quickly

That summer, K moved, transferred his credits, and found a job and apartment. With school, work, and dealingg with a major abdominal surgery (for me), life was busy.

K proposed to me on Christmas eve, almost exactly 9 months after the day we met. he had driving in a blizzard to meet up with my dad to get his permission first.

My prince and I on our wedding day

We got married on a crisp autumn day in mid-October. The changing leaves were still on the trees and cascaded over our day like cherry blossoms in the spring.

K knew about my Cystic Fibrosis, and yet he still pursued our relationship. Contrary to my lifelong fear that I’d share with my mom that “nobody would want me because of my illness”, here was an incredible man with talent, ambition, and above all, love, standing in front of me, pledging his devotion.

Half of My Life

I have now been married half my life to the living embodiment of my perfect half. We have been through a lot, and we always manage to find the joys behind even the toughest moments. Love like that is more than I could have ever expected, and I am truly humbled to be called his wife.

I love you!

I am so thankful for the love we share, and for every moment that has led to today.

The Price of a Few Months’ “Life”

As if my body somehow can read a calendar, I am back in the hospital. I have been averaging an inpatient stay for IV antibiotics every six months or so, and I was last inpatient in December, so it’s about time.

Things Start Brewing

It was only two months after my last hospitalization when I started feeling sick again. It started as a sinus infection – the same mutli-resistant bugs that colonize in my lungs also live in my sinuses.

Three weeks of oral antibiotics didn’t work, so I ended up needing an antibiotic rinse for another few weeks. During that time, the bacteriae in my lungs started florishing, and over the next month or two, we exhausted all of our other options.

I visited my CF clinic several times in the past month to check my lung function, and each time, my numbers went lower and lower.

Decision Time

By the end of April, my FEV1 – a measurement of how much air I can blow out in one second – was down nearly 30% from December.
I was coughing more, had increased junk in my lungs, and got to the point where I was sleeping contantly.

I called my doctors on Monday and they decided to admit me the following day. I had to wait until nearly 8pm for a bed, but started IV antibiotics immediately.

A huge challenge lay ahead of me, however. My doctors usually prescribe three IV antibiotics – medications that are very toxic to the veins. Instead of “regular” IV lines, called “peripheral lines,” we need to use an IV that goes into a much larger vein.

Among the few options I had was a PICC line, an IV that is tunneled into the upper arm and threaded though a vein that empties near the heart. The kind that I use is stitched in place, and has two lumens (tubes).  Another benefit is that the nurses can draw blood from it – like a spigot, which would mean I wouldn’t have to get stuck several times a day.

A PICC line can last several months, which is useful because I am on these antibiotics for 2-3 weeks at a time. However, because of damage to my veins from previous blood clots, inserting a PICC line is more challenging.

It is inserted under x-ray, in the Interventional Radiology department. In addition, due to the amount of work and time involved, I receive “conscious sedation” – a combination of pain and anxiety medications – to make the process less painful and scary for me.

The biggest hurdle is getting on the schedule. I woke up Wednesday morning hoping to get it placed, but I got bumped.

Playing the waiting game.

The next hurdle is dealing with the delicate “regular” IVs and having blood drawn several times a day until I get my PICC line. The smaller veins in my hands/wrists were getting irritated and flimsy. I was running out of places to stick.

The aftermath of several blood draws and a blown IV .

On Thursday, they attempted to place the line, but couldn’t get the line in after nearly 3 hours of work.

Attempt #1 failed.

 

I was despondent.

I was told that they would try again on Friday, and I waited impatiently. I was miserable. Since Tuesday, each morning, I had to abstain from food and drink after midnight because of the sedation (aspiration of food and drink is possible when sedated).

Friday came around and I was starving, getting dehydrated (which makes it harder to place IVs and draw blood), and completely exhausted.

Was it ever going to happen?

As the day went on, I kept getting mixed reports that I was on the schedule. Finally, a note popped up on my calendar slating my PICC placement for 6:15pm. Six o’clock came and went. 7pm, too.

Interventional Radiology department (IR) rarely places PICC lines at night or on the weekend unless there are emergencies, so I was getting really worried that they’d bump me again.

Wasn’t this urgent?

I needed these medications and I was quickly losing access options!! I was at risk nutritionally and feeling really scared.

Around 8:15 pm, as I was frantically texting my husband and a few of my CF friends for support, there was a knock at my door.

A transport rep showed up at my door, ready to take me down to IR. I couldn’t believe it!

My chariot awaiteth.

I was wheeled downstairs, moved, and prepped.

For some reason, instead of trying to place a line in my right arm, they decided to try my left arm again, requiring the doctor to perform an angioplasty. They blasted and plowed their way through my clotted vein, finally achieving success after 2 1/2 hours.

Scary looking, but a success!

 

Despite medications and numbing shots, I was very uncomfortable and scared. I must have reactively winced a dozen times.

But it was finally done. No more pokes for the rest of my stay (as long as the PICC line remains functional)!!

Like the Heavens Opened

I slept like a log Friday night, and woke up Saturday morning finally able to eat breakfast for the first time since I had come into the hospital. Pancakes and bacon never tasted so good!

I am thrilled to finally have a PICC line, making it much easier to get my antibiotics and for the nurses to draw my blood twice a day.

Thank you, God for helping me hang onto the last drops of faith and patience I could find, my amazing nurse, my doctors who harassed IR, my hubby/family/CF friends who kept me sane and entertained.

The Blessings Keep Coming

Another bonus of this hospitalization is that from now on, CF patients will be cared for on a particular floor. That means continuity of nursing staff – the nurses will see us much more frequently, building more experience with CF patients, thus creating an all-around better patient experience.

The Nurse Manager even remembered me from a 3-week hospitalization from fall 2012. She gave me this cute little bear for the nurses to sign!

I have already seen and felt the positive changes taking place as a result. Today, I walked 5 laps around the unit – a total of 1,650 steps, and when I got back to my room, Father Jeff was waiting to give me Communion. I am feeling very loved and lucky today!

And by sheer coincidence, a fellow CF patient – a.k.a. a “Cyster” (a word we use to refer to other women with CF) – is in the room right next to me. I recognized her cough and sent a text message to her, asking if she was in the hospital and on this floor.

This is the third time we’ve been hospitalized at the same time, so it was a crazy coincidence!

And, yes, it’s possible to recognize someone by their cough!

Although we’re not allowed to hang out or be near each other due to contact precautions, we can wave to each other and have quick doorway conversations.

Thankfully, we can send text messages to one another!

It’s nice to have someone else in the trenches with me (although I hope she feels better ASAP!!).

Lastly, and most importantly, I am thrilled to notice overall improvement since the week began.

My cough has decreased, I am getting more junk out, I have more energy, and I feel like my lungs can hold more air. I am sure that my doctors will repeat my lung function tests sometime in the next week, so I really won’t know how far I’ve come until then.

Although the week was pretty brutal, I am glad that all of this work is beginning to pay off. I view this hospitalization as an investment – if I want to have a fun summer, I have to pay the cost. It sometimes doesn’t seem fair, but that’s the way my life works.

Faith Takes More than Just Believing

The second half of 2014 was rough. In addition to three hospitalizations in six months, we had what could have been the biggest life-changer to date.

“They Keep You Alive” – Emily Schaller

Earlier this week, as I was managing my YouTube channel, I came across a bunch of videos created about, for or by people with Cystic Fibrosis. One of the videos stood out to me, so I clicked on it. That led me to more videos created by the same person – Emily Schaller – and I clicked again.

Emily, who she admits that she resembles Ellen (yeah, that Ellen), is a bundle of jokes, insights, positive energy, determination and sheer brilliance. She has a characteristic and unmistakable laugh. I watch several videos, which led me to her website, “Rock CF”.

This image on her page caught my eye – the colors, the visual, the message. I identified with her message. I connected with her sparkling personality. She spoke to me.

Copyright Emily Schaller

A Spring in My Step

Ahhh…Spring. It’s here, no matter what the Groundhog had to say (or see!).

Even though we’re still dealing with snow storms – the meteorologists predicted another one next week – Spring is officially here! There’s so much to look forward to during Spring, which leads us right into the summer!