My Cystic Fibrosis Journey: 1995

Please note that I will continue to write my story, but I may not be able to finish it by the end of the month. So please bear with me should I need to take a day or two break between the remaining posts. Thanks for reading!

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I walked into 1995 with some major resolutions.

I wasn’t going to worry about anything but my life. I had reached a point in my health where I had to weigh every decision carefully. While growing up, we made decisions with fear in the back of our minds; now, I made them with my eyes wide open.

I didn’t care about dating anyone. I worked on my schoolwork, writing for the school newspaper, and enjoying sisterhood. I only took four classes that semester, to give myself  a bit of breathing room.

January – March

I continued to do my nebulizer treatments and airway clearance, the basics of Cystic Fibrosis care.

I used a nebulizer to deliver my bronchodilator medications. They opened my airways to help mucus get out, and to help me breathe better.

I used a Sonic Handheld Percussor – which was a loud, awkward machine – to do my airway clearance. There was a handle that had a cushioned drum at the end, attached to an air compressor which made the drum thump. I had to hold it over every lobe of each lung for a period of time, so that it vibrated the area with the goal of shaking the mucus off the walls of my airways. I don’t have any photos of my old one, but this is a modern one:

Screen Shot 2014-05-20 at 9.20.37 AM

It was really loud, which kind of pissed off the people in the apartment below me. I tried to do it on the bed to absorb some of the sound and vibration. It was difficult to get to each lobe without contorting my body, but it gave me some freedom – I didn’t need anyone to manually give me respiratory therapy.

I was able to purchase one though the generosity of a private foundation run by a family who lost their daughter “Laura” to CF a few years earlier. They were wonderful – covering the cost and delivery of the percussor, and included $200, with explicit instructions “to be used for FUN only!” Amazing people, I think about them often.

March

Thanks to the lovely family I mentioned above, for the first time, I was going away during “spring break”. My roommate, Lisa, and I, decided to drive down to Washington D.C. to visit a friend. On the way down, we would stop in Philadelphia (the suburbs known as “the main line”) to visit my sister for St. Patrick’s day.

So, with bags packed and map in hand, we set out in Lisa’s car.

Where to?

Where to?

Our stop in Philly was so much fun. It was St. Patrick’s day, and it was the opening rounds of the Men’s NCAA Tournament – Villanova (my sister’s alma mater) versus Old Dominion University. It ended up being one of the most exciting games in tournament history, ending in triple overtime with Old Dominion as the victor.

The next day, we got back on the road. As we neared DC, our friend had to change plans, so we decided to just drive until we got tired. We ended up in Virginia Beach.

It was lovely. It wasn’t quite “spring break weather” – the high 60s, but we sat at the pool on the beach anyway. On the second full day, it was a little chilly out, so we strolled along the boardwalk, ate at various beach-side restaurants, and just relaxed. After lunched, we stopped in a souvenir shop. We were looking for “VA Beacg” boxer shorts and a guy comes into the store and starts talking to the cashier. Half-listening to conversation, I looked up at Lisa and raised my eyebrow. Suddenly, the guy turned around and starts talking to us.

I paid for my boxer shorts and Lisa and I walked out of the store. The guy ran out and asked if he could walk with us, while he was waiting for his friends to meet him. It was like lightning – we hit it off so well. He asked if we were hungry – we weren’t, since we just had lunch, but my wingman Lisa gave me the “go ahead” sign and we stopped at a little place called Abbey Road. He asked if we wanted a drink. We nodded, and he called over the waitress and ordered three Long Island Iced Teas.

Lisa and I exchanged a look. At the time, that was my favorite “grown up beverage”. How did he know?

The more we chatted, the more weird coincidences came up – especially one huge one. We had come here only because our friend in DC had to change plans, and he was in VA Beach only because he was visiting a friend in DC whose availability changed, so he came down to stay with his cousin who was in the navy.

We came down from CT, he came out from Missouri. He was also scouting schools to transfer to, ones with good Graphic Design programs. He had a dreamy southern accent and was very much a southern gentleman – quite different from the guys in New England.

After chatting for two hours,  he said he had to go meet his friends. We parted with promises to “meet up again”, and asked if we wanted to join him and his friends at a comedy show the next night. That sounded like fun, and we said we’d see him tomorrow.

I could go on and on, but I knew there was something special going on. Something more than “he’s cute”. That day would forever be known as, “The Day Ken and I Met”.

March 23, 1995.

March 23, 1995.

April – May

Long story short – we called each other nightly and wrote long letters to each other. It was like an old-time courtship. Getting to know someone over the telephone and through writing is a really different experience. There’s something about writing letters that is intimate an exciting. He knew all about my Cystic Fibrosis and I tried to give him as real a picture as possible. It didn’t deter him.

Every day, I’d run to the mailbox to see if there was another letter from him, even though I knew I’d talk to him that night. One day, he sent me a box full of gifts – some stuff from school, a shirt from his home state, Arkansas, and an emerald ring.

We fell in love over those long six weeks. It freaked out my mom and my sisters, because they didn’t know him. But I knew. I just knew.

We tried to make plans to visit each other, but school came first.  After six weeks, he decided to come visit – he heard that my school had a great design program, and we were already falling in love. When he finally arrived and knocked on my door, everything made sense. I hugged him, and it  just felt “right”.

He made plans to transfer, found an apartment in my building, lined up a job, and drove back to Missouri to get his stuff and go to his sister’s wedding. WIthin 2 weeks, right after school ended, he was back in CT.

Ken’s arrival was like trial by fire. He had met my mother on his earlier visit, but he had yet to meet the rest of my family.

Coincidentally, my sister was getting married that following Saturday, and the next day, my other sister (who was 8 months pregnant) and her husband were moving into their new house.

Ken and me at my sister's wedding.

Ken and me at my sister’s wedding.

June – August

Life continued to bring its ups and downs.

My niece – the first baby among my siblings – was born. Ken and I got to the hospital just as Sarah came into the world.

My niece, Sarah!

My niece, Sarah!

However, Cystic Fibrosis was doing its best to try to de-rail everything good in my life.

I had planned to be an Orientation leader again, but had to quit halfway through because I had pneumonia again. I did everything possible to try to stay out of the hospital, but we know that it’s not always in my hands.

I had also been experiencing some pretty severe GI problems. I had some pretty terrible pain in my lower right side. Nothing helped. I was in and out of the ER a few times and had lots of tests, but nobody seemed to be able to pinpoint the cause. Ken and I spent a lot of time in doctor’s offices. It was crazy, because our relationship was so new but so many huge things were happening. It certainly put things in over-drive.

September – October

I started up school again, with the constant barrage of lung infections and stomach issues. I kept seeing my GI doctor and having to go to the ER. I tried to carry on, hunkering down on my coursework, covering campus news events for both my Journalism classes and the campus newspaper.

Once again, I was nominated for Homecoming Queen, and at the homecoming football game, I was crowned Homecoming Queen! Me!! Dorky, uncoordinated, be-speckled, shrimpy me, the one who would never be “beautiful” but forever labeled “cute” – beat out everyone else for the title.

Lisa and me at Homecoming.

Lisa and me at Homecoming.

November

It seems that with every joy we experienced, I had to pay, somehow, with health problems.

We planned to visit Ken’s family in Arkansas for Thanksgiving. Due to school obligations, we couldn’t get a flight until early Thanksgiving morning. We flew out there, and his parents met us at the airport. We went straight to their house and had a Southern style Thanksgiving dinner. I had never had cornbread, and it was out of this world. We spent the next few days out and about. We visited the historic town of Fayetteville, and took a carriage ride around the town square lit up for the holidays. We enjoyed famed “southern hospitality”. I giggled at Ken’s dad’s accent, and he, in turn, teased me by calling me the “Eye-talian girl” or “The Yankee”.

The following Sunday was Ken’s sister’s daughter’s baptism, and he was the Godfather. It was also my 24th birthday.

We flew back home that night and the next day, my stomach pain was getting worse and worse. We went to the GI doctor and insisted that we get exploratory surgery. He finally agreed and we scheduled it for December 5th.

December

When I went into surgery, we expected it last 45 minutes. I remember worrying that we’d go through this, and in the end still have no answer. Well, what happened next was life-changing.

My mother, father, and Ken were all there during my surgery. An hour turned into 2, 3, and even six. Nobody came out to give them updates. Finally, after all day in surgery, the doctor came out and said that initially went in laparoscopically – small incisions that allow a camera and a single instrument inside – but what they found required them to open me up. Apparently, my appendix had ruptured many months ago, and over time, it had necrotized my intestines on either side. The only thing that kept me alive was the high doses of antibiotics I had been taking for my lung infections.

I remember waking up in the most severe pain imaginable. I thought I was going to die. I remember them pulling my vent out, and doing so gave me the most intense body pain.

They brought me to a recovery room, where I remember hearing the guy next to me screaming – I’m cold, it hurt – and thinking, I feel everything you’re saying. But it hurt to do anything – talk, cough, move at all. I had no idea why. It was at that time that I began to wiggle my feet in response to pain and discomfort – a habit I still do today. I found that I could do it without using my major muscles or shaking the rest of my body.

They finally wheeled me into the ICU where my parents and Ken waited. I remember very little, except the pain, asking Ken if I was going to die, and throwing out my parents because they had an argument. I  was pretty sedated due to the work they had to do, so even though the doctor talked to me and told me what happened, it didn’t click. After several attempts to talk to Ken, I finally understood what happened, and the amount of work that they had to do.

Despite the fact that I was stapled from sternum to below my belly button, the nurses got me out of bed the very next day. Recovery starts now, she said. After a few days in ICU, I went to a regular room. I remember having to cough and because of the internal stitches and the external staples, I had to brace my abdomen so that I didn’t pop anything. IT also hurt like a b*tch to cough, but if I didn’t, I could clear my lungs out. So the nurse held a wrapped up towel to my belly, and Ken put his arms around me to help me brace for the pain – and I coughed and coughed. From laying down, and being flat and relatively immobile for days, I had a hard mucus ball that was about 2/3 the size of a golf ball. It took a good 20 minutes to work out of my lungs, into my throat, and finally cough out. I remember feeling the muscles and slowly moving it up. It was nasty and scary and I can still visualize it today.

After a total of six days in the hospital, I went home.

I had to put all of my classes on hold and take them as “Incomplete” and finish them over winter break. That was difficult, because I was in a lot of pain for the first several weeks and it was hard to concentrate. I had also lost about 20 pounds, putting me at the low end of my desired weight range. I had to work up to eating real food again. With Christmas coming around, I knew there would be lots of yummy food to eat!

Christmas Eve arrived, and we usually celebrate that night with my Dad. That night, Ken proposed to me in front of about 25 people. Of course, I said yes. The next day, we celebrated with my mom at my sister’s house in Massachusetts. I couldn’t believe where I was now, after the kind of year we had.

1995 was a year of the biggest ups and downs I’d ever had. It seems that this was how my life would go from now on – do my thing, get sick, get better,  and start all over again. Only, now I had someone to share my ups and downs with – someone who knew what he was getting into, but also knowing that there was going to be a lot of uncertainty.

It takes a special person to be able to do that. Nobody’s perfect, but he is perfect for me. And now, we were going to face life together, no matter what it brought our way.

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