My Cystic Fibrosis Journey: 2002

The Countdown

New Year’s Eve

We celebrated New Year’s Eve at a trendy wine bar in downtown Boston and after the party ended, popped into Chinatown for some Dim Sum. Chinese food anytime is great, but after a night of partying in my favorite city, it’s heavenly.

After eating, we made it back to our friend’s house where we had parked, and got home as the sun was rising. In the first hours of sunlight, I started having terrible stomach pain in the upper part of the right side of my belly. It was pain I’d had on and off before, but it was never steady enough to need treatment or concern. This time however, it felt like someone was sucker punching me in the ribs. I also felt really nauseated.

Was it the Dim Sum?

The pain was unrelenting, so by 8am, we were in the Emergency Room. Because my Cystic Fibrosis doctors are at a particular hospital, we drove the 25 minutes down there so that if admitted, I’d have the CF team around if I needed them.

When we got there, it was crowded – perhaps fifty people waiting, if I had cared to count. I knew it would be a long day, but after all of the failed opportunities to diagnose my previously exploded appendix, I was used to not only waiting hours, but waiting in severe pain.

Six Days in Waiting

When they finally saw me, the blood tests showed some abnormalities, so they admitted me. All of my scans showed that gallbladder didn’t look good, but they weren’t sure it was bad enough to put me through the process and risks of surgery.
For nearly a week, I laid in bed, in pain, not eating or drinking anything. Each day, they’d start planning for surgery, only to cancel it the next day.

On day six – Thursday morning – they finally scheduled the surgery. I had about an hour’s notice. I kept my mouth shut, but I once again feared that they’d find nothing. Not that I wanted anything to be wrong, but if I’m telling you I am sick, and you go looking inside and find nothing…well, there goes all of my credibility. I had flashbacks to the months spent in agony and frustration that led to a ruptured appendix and having to remove part of my intestines. So there was a lot at stake.

I went into surgery, and when I woke up, I felt the oddest sensation – a complete absence of pain. That unrelenting, nauseating pain was gone! I felt so happy that I barely noticed the surgical pain. I was just so thrilled to have that piece of junk out of my body. Plus, I was able to go right home, as its typically done as an outpatient surgery.

The pathology report came back: Chronic Cholecystitis (inflammation), fatty composition, and thickened walls. I felt validated. I also felt a thousand times better. No more pain. It was glorious.

Moving On, Up, Out, and In Circles

Moving Over

I was able to go back to work on January 14, and I was very ready. My company was re-organizing again and I was getting ready to move to a new department in the next building over.  I would keep my usual schedule of four 10-hour days, because it worked well with some of my duties as a liaison for our offices in in Australia and the EU. Because I came in earlier and left later than most, I was able to hold conference calls in the offices across many time zones.

However, although my surgery had taken away my pain, I was still having problems with my energy.

Moving Out and In

While all of this was happening, Ken and I were in the process of buying a home. We had begun the process two months earlier, and now we were just days away from signing on the dotted line.

So I had to leave work again – this time a planned 2 days off.

The actual closing and moving day was awful:

  • First, we had an ice storm, and the usual minute ride took over an hour. I had the cat in the car with me, and we followed behind Ken’s car with the most important stuff we didn’t want to put on the moving trucks.
  • Second, I was developing an infection – most likely pneumonia again, but there was so much that had to be done that unless I dropped at any given moment, we had to get through this.

I went back to work on the Wednesday the 30th, putting in a full day, but was miserable. I coughed so much that people around me complained; one even yelled out “shut up!” Since I had a 4-day schedule, I only had to last one more day (Thusday) before 3 days at home. That’s what I kept telling myself.

Halfway through Thursday , my cough was bad that my boss told me to go home. I did, and I got right into bed. I called my CF clinic and set up an appointment for Monday. I slept the most of the weekend, ignoring the moving boxes.

Sunday was the Super Bowl, and the Patriots were in it. We watched the television from the bed, where I was dozing on and off. I couldn’t keep my eyes open. All of the sudden, Ken shakes me awake.

“We’re gonna win!!! Look!” We held our breath as Adam Vinetieri kicked in the final field goal. I fell asleep with Queen’s “We are the Champions” running through my mind and a smile on my face.

Moving in Circles

The next morning, I knew that my doctors would admit me to the hospital for IV antibiotics, so I packed a bag. I also wore my Patriots jersey, even refused to take it off when I got into my hospital bed. Nobody complained – half the staff wore some sort of Patriot gear that day!

This time around, I didn’t have a lot of choices regarding managing work and the hospital. I had maxed out my sick and vacation time for my gallbladder, so I had to apply for short term disability. Although during previous hospitalizations, I had worked and dialed into my work computer to get stuff done, this time around, I was way too sick to do anything but just “be”. I felt too awful to even care about anything else.

It’s a strange feeling – when your body is so sick that all you can think about is what’s right there in front of you – those special red socks that indicate I am a fall risk, the PICC line in my arm and pieces of tape keeping the tube from flopping around, the stream of doctors, nurses, respiratory therapists, and various staff members who parade in and out of the room, the gross looking/smelling/tasting food they try to force you to eat, the gross shakes they try to entice you with to get some calories into you, all of the monitors, tests, blood draws, the medications, the treatments, the respiratory therapy.

My CF team was amazing, and the hospital was well-run. At the time, adult CF patients stayed on the Pediatric floor, where the nurses knew how to treat CF. That meant I always had a private room at the end of the hall. They also let me wander around the hospital as I got better, dragging my IV pole and donning a mask. I’d go to the cafeteria, the chapel, the courtyard, the gift store – anywhere to get out of the room and be active. It’s so important for patients to feel that they have some control, especially as their medical status gets worse.

I came home after 17 days, and I needed another week to gain my strength. When I returned to work at the end of February, I had a lot to catch up on. I was the only person who did my job, and they had to figure out who was going to do all of the stuff I did. It was both a curse and a blessing, because I didn’t want to leave them in the lurch, but yet if they could get along without me, why would they keep me around? I’d survived seven rounds of layoffs, so I had every reason to fear for my job security.

Moving Down

After all this happened, Ken and I Decided that I should go down to a 3-day, part-time schedule. I’d do three 10-hour days., subject to my supervisor and the HR department’s approval. Nobody worked PT unless they had already worked there for a while (I had almost 5 years with the company) and it was a medical or family need.

It seemed to worked for a while, but I was still dragging. I just didn’t seem to bounce back like I usually did. I did a part-time schedule for 2 1/2 months, but it didn’t change how I felt on a daily basis, or give me enough of an added boost in time to get the rest I needed. The only thing I did in my life now was work and sleep. It took every ounce of my energy just to get to work and put in my day. Everything else fell by the wayside – housecleaning, my gym membership (I used to be a gym rat), social life.

Moving On

Some time in April, Ken and I decided that working, even part-time, was getting impossible. We met with the HR Rep and made an exit plan. I don’t know if I thought I would ever return, because CF generally doesn’t “get better” in the long run, but the HR rep told me that I would always have a place there. Even if it was just a nicety, it certain meant a lot to me.

It was an agonizing decision, partly because of the financial risks, and also because I loved working. I loved my job. It wasn’t perfect, but I really enjoyed what I did and the people I worked with. I loved the paycheck and the benefits. I loved being so productive. I was really proud of myself. But in a world whee you are valued for “what you do” for a job and not for “who you are,” I was losing the one major thing that put me in the “normal” category.

Changing Directions

IT was only a few days later that Ken found out that  his office was closing, that the company was discontinuing the software product that his office created and updated.

What do we do?

I had just left my job, and although I received Long Term Disability benefits, it was a fraction of my part-time income.

Thankfully, Ken has a great work history and always lands on his feet. His skills, experience, wide network, and leadership ability landed him in a good job with the salary he requested, and great medical benefits. Those were the two things that had to matter most – keeping us safe, secure, comfortable, and insured.

Leaving Myself Behind 

The first few months I was at home, I felt lost. It was hard not having somewhere to go every day, not seeing people, and rattling around the house while Ken was in the city. I was constantly reassessing the situation.

Was I being selfish?

Is this the right decision?

What will people think of me?

I had to constantly refer to my list of Pros and Cons to reassure myself that we did the right thing.

Pros and Cons of leaving work.

Pros and Cons of leaving work.

 

Then the Light Began to Shine…

I was learning, through experience, that things happen for a reason, and that I was pretty dang lucky that we were able to bring me home to take care of myself.

The Opportunity

The first time I got sick after leaving work, I realized what a blessing it was to be able to take care of myself without the burden of a job, a commute, the stress, the fear of missing work for doctor appointments or hospital stays. It was a huge relief. I could do all my treatments, take my medications, rest, and eat on my schedule.

So when I had two additional medical interventions that year, for the first time, I didn’t have to worry about deadlines or schedules or finding someone to get my work done. I could focus on my health.

  • In June, I had to have another gynecological surgery to remove polyps, fibroids and an Endometrial Ablation. I had been found severely anemic and it was due to very heavy, very frequent periods. Recovery was very painful and uncomfortable, and took about 6 weeks to feel normal again. I could not imagine having to go back to work in the middle of that recovery – let’s just say it was pretty gross and uncomfortable.
  • In November,Iwas hospitalized for a bowel obstruction. These are rather common in CF patients due to the thick mucus present in our intestines, as well at the amount of undigested food that passes through. When I first got to the ER, they couldn’t see it on scans, but began the typical treatment. One of themoretraumatizing procedures I’d hate to date was the insertion on an NG tube. Its purpose but to both relieve the pressure in my stomach, and administer high-powered laxatives to help push through whatever was blocking my intestines.The strong laxatives administered via NG tube didn’t do anything – in fact, I vomited it all up. They kept x-raying me, and still couldn’t find anything, but I could feel it – under my left rib. They brought me up to the internal medicine floor where they had to administer severalheavy-dutyenemas. Once the obstruction dislodged, it was like a faucet. They nurses could not believe the volume of stool in me. Halfway through, another x-ray showed all the stool from the top to the end of my intestines, making its way down.It took three days to clean me out, and I vowed that I would never, ever, let this happen again. My doctors placed me on medication to help keep things moving. The medication – Lactulose – is different from typical laxatives. It works by drawing water into the intestines to prevent hard buildups of stool.Since I have frequent partial obstructions and now 2 total obstructions, my doctor diagnosed me with Chronic Distal Intestinal Syndrome – which basically means that I am prone to blockages. I remember seeing the final diagnoses written on my discharge papers – it said “Patient FOS”.

“Full of Sh*t?” I asked the nurse.

“No,” she laughed, “full of stool.”

I Could See the Good in My Life

Someone New to Love

My third nephew and second Godson, Andrew, was born that May.

My little Andrew!!

My little Andrew!!

I often say that I live vicariously through my sisters as mothers. My nieces and nephews light up my world. I am so blessed to be part of their lives, and it’s such a joy to watch them grow up and experience life.

We Enjoyed Southern Hospitality

That year, we had Thanksgiving at Ken’s Uncle’s Ranch in Arkansas. There were over 40 people there, and I had never seen such a huge food spread – 8 turkeys!!

I had wanted to contribute, and had planned to make one of my own “Toni” recipes – sautéed chicken and peppers, with tortellini in a white sauce. I brought all of the ingredients there, and made it as Ken’s mom and aunties stood behind me, watching writing down every step (and measuring all of the ingredients because I usually just toss things into the pot). It was so much fun, and I got to share an Italian dish with his family. I had made so much that it took a huge pan the size of a lobster pot to make it all. I remember all of the guys in the family – many cousins and uncles – had several servings each.

I grew up learning that cooking is a way to show people you love them, and it was so much fun to see everyone enjoying something that I made for them.

We Got Out of Dodge a Few Times

We were actually able to make a few fun trips during the year – five days in Montreal, and my friend’s wedding in upstate New York. With our new plan to build in recovery time, we were able to get in some quality fun time. We made the most of the bursts of energy I did have, and scheduled rest time right along with our planned activities.

We Christened our Home for the Holidays

 

Christmas, 2002.

Christmas, 2002.

We also hosted our first Christmas in our new home. I loved cooking and hosting, and we carefully planned all of the pre-holiday preparations such as cleaning, shopping, and setting up the dining tables.

I Created a Place for Women with CF to Gather

I also joined a popular women’s website and created and led a weekly CF-related chatroom. It was a lot of fun bringing people together and facilitating the chat events. I ran the chat for about six months before the website changed the way they run their programs, but it was very satisfying and made me feel like I was making a difference. For once, I used my CF for good. It was the first step of many that I would take to raise awareness for Cystic Fibrosis.

Lessons…Lots of Lessons

The entire year played havoc on my personal identity. I was officially a “sick person,” versus someone who gets sick often. Cystic Fibrosis had finally tipped the scales in terms of how much it affected my life. When people ask me who I am, I still didn’t have a good answer. I struggled with that for years.

But despite the way that the year began, and the number of health crises we endured, the year also brought a lot of good into our lives. We did as much as possible to keep the scales balanced, and even though at times, CF seemed heavier and more intrusive, we knew that in time, things would even out, even if just for a little while. We did the best we could with a lot of junk thrown our way, but we continued to learn lessons with each step.

Isn’t that what really matters? Learning, growing, evolving. Bad things happen to everyone, but most important is how you handle them. I think we were getting the hang of things, and that was the key to not just surviving, but living.

 

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