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MY MEDICAL ROUTINE: A LIFE-OR-DEATH NEW YEAR'S RESOLUTION

Margaret Lapsanski


margaret lapsanski'Tis the season! Or shall I say, 'Tis the season that just passed: the season of holiday parties, presents, time spent with family, and the joy of it all. It is also the season of eating too much, stress, gaining weight, and falling out of our normal everyday routines. It is no surprise that after two months of holidays, a majority of people make New Year's Resolutions. Maybe you promise to go to the gym more, change your routine, eat healthier, or get in shape! Did you ever notice that for the month of January the gym is packed? There are more people in the class you want to take, and the vegetable aisle in the supermarket seems extra crowded. But what if you had to make a resolution or come up with a routine that you could not give up? What if failure was not an option? What if you had a chronic illness, like cystic fibrosis (CF), and your routine was the matter of life or death? Would you be able to stick with it?

My medical routine has been ingrained in me from a very early age. In fact, my routine and medical regimen is what made me realize for the first time that I was different from my peers. I distinctly remember one summer day playing kickball with my friends in the front yard. From the front door, my mother called out for me to come inside to do my treatments. It made me wonder ... why did I have to go inside—when everyone else was playing—and sit down for a half hour inhaling nebulizers with my parents pounding on my back? Did anyone else my age have to do this? My parents took these opportunities to explain to me how important it was to my lungs and my overall health that I always maintain the medical routine they taught me throughout the years.

My medical routine evolved over the years and fluctuated with the state of my health. Usually I did chest physical therapy (CPT) twice a day. This encompassed doing 30 minutes of inhaled medications to open my airways, followed by "pounding" on the lobes of my lungs to loosen the thick and sticky mucus clogging my airways. This was usually done before school in the morning and before bed after I completed my homework or activities for the day. As I grew older and more inhaled medications came to the market for treatment of CF, my CPT routine became even longer. With the addition of TOBI and DNase, my inhaled medications could take from 45 minutes to an hour to complete. Eventually my parents no longer needed to physically pound on my lobes as I started using "The Vest". I would wear this contraption for another thirty minutes while it vibrated, shaking my whole body, and in turn shaking the mucus loose from my lungs.

That was only just one very important part of my CF medical routine. I had my own personal pharmacy in my bathroom—pills that I needed to remember to take every day. Vitamins, minerals, calcium, and nasal sprays all helped to keep infection at bay and replace all of the nutrients my CF body did not absorb. I also needed to remember to take pills with every meal, even little snacks. Once CF began to progress and I was no longer gaining weight on my own, my routine evolved once again. A feeding tube was placed which meant that now, every night before I went to bed, I had to fill up the feeding tube bag and prepare the night's feeding. The formula made me nauseous, but this part of my medical regimen was essential for me to gain weight. As much as I hated the feeding tube, I did this religiously every night since I knew I was getting extra nutrients and was better able to fight off infections.

Shortly after I started the feeding tube, I was tested for Cystic Fibrosis Related Diabetes (CFRD). It was determined that I was borderline CFRD so yet again, my routine evolved. Now, before I made the nightly feeding, I had to check my blood sugar and cover for the overload of carbohydrates during the night.

Exercise was also an important part of my medical routine and should be for every CF patient. Exercise was never my strength as I hated coughing in front of people that I didn't know. I felt as if everyone was always wondering what type of horrible cold I had. After I stopped playing soccer, my exercise routine was definitely lacking. I also needed to eat extra food in order to keep weight on my already small frame. My body did not absorb calories and nutrients correctly so I needed to eat extra calories to gain weight. During the day I tried to make my food as fattening as possible and even fit in a high calorie shake when I could.

On top of my daily routine, I also had doctor appointments every three months. There were blood tests, growth charts, and pulmonary function tests galore. Most of the time my routine doctor appointments were stable, but sometimes they returned bad news. If my pulmonary function tests were declining, it usually meant checking into the hospital for a "clean out". A "clean out" is CF-speak for two weeks of IV antibiotics. Usually the IV clean out started in the hospital and finished with home care. So now, on top of the normal medical routine, IV medications were administered in evenly spaced eight hour intervals.

After this full day of my medical routine, as well as all of the visits to the doctor's office, I still needed eight hours of sleep in order to just make it through my day. Everything that was added to my routine over the years pushed my bedtime later and later and made my wake-up call even earlier in the morning. It was no wonder that sometimes I fell asleep during my classes in school. It is exhausting even thinking about this routine today. Somehow, I managed to get A's in high school, participate in extra-curricular activities, complete my homework on time, and get accepted into a great college.

My medical routine was such a part of me that I did not know anything different growing up. My parents and sister were a great support, helping me stay on top of my routine in addition to all of the normal responsibilities of growing up. I figured out how to use CPT time to get my homework done, or read, or even watch movies with my family. Although it was a huge time drain, and I was usually tired, I knew how important it was for me to stick to it. I did not mind my routine simply because I knew it was keeping me alive.

I didn't start to mind my medical routine until it didn't really work anymore. My CF eventually progressed so much that I was in the end stage and needed a transplant. My CPT was no longer efficiently clearing the mucus out of my lungs. They were in such bad shape that my routine was overbearing. I had to wear oxygen full time and normal everyday tasks became almost impossible for me to complete. The feeding tube, which had stopped putting weight on me, was simply just keeping me alive. At 21 years old, 83 pounds, and with only 20% lung function left, I was lucky enough to receive a double lung transplant and, as a result, the routine I had gotten used to once again changed.

I remember the anxiety surrounding getting my transplant. This was a completely unfamiliar routine. Would I understand when my body was sick and I needed to call the doctor? Would I remember to take all of my medications? Would I be able to take care of myself? Would I see results again by sticking to my new medical routine?

My medical routine to care for my new lungs was vastly different than my CF routine. There was no longer a need to do CPT since there was no mucus in my lungs. I never used my feeding tube again since my body was absorbing more of the nutrients and calories from the food I was eating. I did, however, have to take twice as many medications to keep my body from rejecting my new lungs. Three times a day, I had to take upwards of 30 pills. My digestive system had taken a hit and now instead of one or two enzymes with meals, I was up to five. My "borderline CFRD" quickly became full blown. With the prednisone, my blood sugar was out of control, needing to be checked five times a day to keep it stable.

Adopting an active lifestyle also became a normal part of my medical routine. After my rehab sessions were over, it was up to me to adopt an exercise routine to keep my new lungs working and healthy. My dedication to the gym was something that I was not used to with my CF routine. Now, I needed to find a love for working out and go to the gym for at least an hour a day for an intense physical work out. In addition, my sinus polyps started growing out of control making it difficult to breathe through my nose. I needed more nasal sprays and an irrigation routine to keep my sinuses clear and me breathing easy.

Just like my CF routine, my transplant medical routine has evolved over the years. Even with working full time, I always need to ensure that my medical routine comes first. My medicines for the week are neatly organized into pill containers every other week. I take my medications and check my blood sugar at the same time every day, regardless if I have a work meeting, deadline, or social event. My nasal irrigation and sprays are waiting for me in the medicine cabinet in the morning. Because exercise is one of the most important factors in keeping my lungs healthy, I get in a vigorous workout either before work or after work depending on my schedule. It was the dedication to my exercise routine that allowed me to gain enough strength in my muscles and my lungs to run a half marathon after my transplant.

After my transplant, not only do I have to take double the medications, but I have double the doctor appointments. Somehow, I need to fit in all of my appointments every three months with blood work every six to eight weeks to monitor my medication levels. This includes my endocrinologist, my transplant team, the otolaryngologist, the gynecological oncologist, and the ophthalmologist. I see some of my doctors more than I see my own family!

My medical routine is not easy and, sometimes, it's downright draining. However, for someone like me with a chronic illness, failure at my routine is not an option. Compliance is the only way to a healthy existence post-transplant. Even during busy and stressful times like the holidays, my medical routine must come first. After all, it is maintaining the routine that affords me my health, which means I am well enough to participate in holiday events. So even though sometimes I might not want to go to that doctor appointment, or get that blood work, or take that pill, I think about my organ donor and how lucky I am to not only be alive but to have an amazing quality of life. Those negative thoughts leave my head when I realize, as I always do, how lucky I am to be able to exercise, and go to the doctor, and take those pills, because if I can do all of that—it means that I am alive and healthy.

Disclosure Statement: The author has no conflicts of interest to disclose.