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.